Today I had my treatment planning for radiation. Essentially I spent half an hour learning about radiation, and then two hours getting positioned for treatment. I know it sounds odd that it takes two hours to get positioned, but the idea is that the position has to be a) reproducible and b) comfortable for 30-40 minutes at a time. Oh yeah, and it has to fit in the machine. It took quite a long time to get my arms positioned correctly. Then they took some images with the CT machine and gave me my tattoos.
Yes, you read that correctly, I have tattoos now. Four dots around my breast that make a square (or diamond I suppose). They will help reproduce the exact same position for the radiation from appointment to appointment.
Now that they have done the positioning, and taken the additional images, my doctor will take all of that information, put it together with the information they had before (from the MRI, mammogram and PET scan) and using a fancy computer system, design my treatment. They can do crazy things with these beams. This will take about three days.
On Friday, I will be going in for my "simulation" appointment. Essentially they will take me through the process, step by step, exactly as we will do on treatment days, all the way up until the point that they would beam me with radiation. Then, on Monday, I begin treatment five days a week.
I will have 26-28 treatments, which means I will be done sometime between October 31st and November 2nd. I'm holding November 4th as my "done by" date, just in case. That is a Friday and I figure I can be sure we will be done by then.
Here we go again. My side effects should be mild- they say my skin will react like a sunburn and I might feel fatigued. Nothing like chemo however. If you have thoughts and prayers to spare, please think of me over the next several weeks. See the radiation being effective, eliminating any rogue cells that may still be in my body. See my body taking the radiation in for its purpose and sustaining my health beyond that. See my future scans being clear- for the rest of my life.
Showing posts with label Just the facts. Show all posts
Showing posts with label Just the facts. Show all posts
Monday, September 19, 2011
Saturday, September 10, 2011
Radiation
For a factual cancer update...
I am healing quite nicely from surgery. I would say I am at a good 70-80%. Considering it really takes months to get to 100% I feel pretty good about that. I do have one more "fill" for my tissue expander which will happen this Wednesday, and those leave me a little sore. Nothing too bad, it just takes a couple of days to recover.
My treatment planning appointment for radiation is scheduled for Monday September 19th. This appointment will place me in a CT scan for a couple of hours while they collect a ton of information to compile with all of the information they already have (MRIs, PET scan, mammogram, etc). All of this information goes into a super computer where an exact treatment plan will be determined by my Radiological Oncologist. Once this plan is complete I will begin treatment. We expect this will be at the end of the same week (so around the 22nd or 23rd). Once I begin I will have 28-30 treatments. Based on the timing, I should be done with treatment by the first couple of days of November. Once that is all done, I will be officially done with treatment and moving on to observation. I am so looking forward to that day.
I see the light at the end of the tunnel. That is a good thing.
I am healing quite nicely from surgery. I would say I am at a good 70-80%. Considering it really takes months to get to 100% I feel pretty good about that. I do have one more "fill" for my tissue expander which will happen this Wednesday, and those leave me a little sore. Nothing too bad, it just takes a couple of days to recover.
My treatment planning appointment for radiation is scheduled for Monday September 19th. This appointment will place me in a CT scan for a couple of hours while they collect a ton of information to compile with all of the information they already have (MRIs, PET scan, mammogram, etc). All of this information goes into a super computer where an exact treatment plan will be determined by my Radiological Oncologist. Once this plan is complete I will begin treatment. We expect this will be at the end of the same week (so around the 22nd or 23rd). Once I begin I will have 28-30 treatments. Based on the timing, I should be done with treatment by the first couple of days of November. Once that is all done, I will be officially done with treatment and moving on to observation. I am so looking forward to that day.
I see the light at the end of the tunnel. That is a good thing.
Wednesday, August 3, 2011
Here We Go!
Tomorrow morning I am scheduled for surgery. I will arrive at Marin General Hospital by 6:30am and am scheduled for surgery at 7:30am. I should be out of surgery between 11:30 and 12:30. I will spend one night in the hospital unless I need to stay longer. I don't anticipate that, so I will be home on Friday!
I am having a mastectomy of the right breast and a sentinel node biopsy. They will remove the breast tissue, while preserving the skin and nipple of the right side. Once that is done, a tissue expander will be placed under the muscle to preserve the pocket for future reconstruction. There will be two drains placed as well which will stay in somewhere from one to three weeks. The sentinel node biopsy will have three to five lymph nodes removed and checked for cancer cells. Today I was injected with some radioactive material that will travel to the nodes. The way it works is that it will go to one node first and start to collect there, and then travel to the others. The nodes that have the most material left (determined by a fancy geigercounter) will be the ones they remove. I am completely confident that those will be negative. The part I am most interested in is how much cancer is actually left. We have a point of reference from the MRI that was done after my last chemo, but it should have continued to shrink after that point.
Tomorrow, I can say that I am cancer free. This is a big deal. Although I'm scared (surgery isn't exactly something you look forward to) I am ready. I am ready to be truly on the road to recovery and not just in the process of getting worse before I get better. I am ready to get my life back. I am ready to be mommy, and wife, and friend, and not the broken person.
So keep me in your prayers and thoughts tomorrow. It is a big day!
I am having a mastectomy of the right breast and a sentinel node biopsy. They will remove the breast tissue, while preserving the skin and nipple of the right side. Once that is done, a tissue expander will be placed under the muscle to preserve the pocket for future reconstruction. There will be two drains placed as well which will stay in somewhere from one to three weeks. The sentinel node biopsy will have three to five lymph nodes removed and checked for cancer cells. Today I was injected with some radioactive material that will travel to the nodes. The way it works is that it will go to one node first and start to collect there, and then travel to the others. The nodes that have the most material left (determined by a fancy geigercounter) will be the ones they remove. I am completely confident that those will be negative. The part I am most interested in is how much cancer is actually left. We have a point of reference from the MRI that was done after my last chemo, but it should have continued to shrink after that point.
Tomorrow, I can say that I am cancer free. This is a big deal. Although I'm scared (surgery isn't exactly something you look forward to) I am ready. I am ready to be truly on the road to recovery and not just in the process of getting worse before I get better. I am ready to get my life back. I am ready to be mommy, and wife, and friend, and not the broken person.
So keep me in your prayers and thoughts tomorrow. It is a big day!
Tuesday, May 31, 2011
Round Six
Today I completed round six of chemo! Only two more rounds to go and that means I will be done (in final recovery) in a short four weeks. I am SO ready to be done. However, things are looking good. The tumor is essentially gone from what we can tell. There is still some "thick tissue" but that could be just scar tissue. To this point, no one has mentioned the possibility of scar tissue where the cancer was, so to hear that as a possibility, for me, was really good news.
We started the morning off meeting with my surgeon. She is really pleased with my response to the chemo and even brought the possibility of a lumpectomy back on the table. It is unlikely and would only be an option if, when we do my MRI following the end of chemo, we find no tumor at all. However, that it was even spoken about as an option made me feel really good. I am still mentally prepared for a mastectomy, but if I could get away with a lumpectomy, that would be awesome. There would be no reconstruction required and that means I would be actually done with the physical part of this process in October/November without a major surgery looming years down the road. The reality though is that the local rate of recurrence is significantly higher in young women who have a lumpectomy as opposed to a mastectomy. So it may not be the right choice, but it feels good to even have it out there as an option.
So, how do I feel? This chemo is definitely different than the first type I was on. If the first cycle was any reasonable indication, here is how I think this cycle will go. Today I had treatment until about 1:40pm. I slept through about half of it because they give me a super dose of benadryl as a pre-medication. Then I woke up, had a snack and read some trashy magazines. I was alone, which was sort of nice because I didn't feel like I needed to entertain anyone. I slept when I wanted, zoned when I wanted, and read when I wanted. Then my sister and family picked me up, we grabbed some lunch and I came home. I ate lunch and napped because the benadryl was still in effect. Tonight I feel pretty good. The benadryl has worn off and the chemo doesn't leave me feeling drugged like the first drugs I was on.
Tomorrow I anticipate feeling pretty decent. I'm sure I'll need a little nap but overall expect to feel fine. Thursday I expect the bone pain to kick in which was tough last week because it was unexpected. I anticipate it being a great deal easier to manage this time because I already have the meds and can catch it early and keep it at bay. This will go on for a few days and I'll be in pain management mode. Unfortunately the pain meds will effect my energy, but the chemo doesn't seem to. Then around Tuesday or Wednesday I'll feel like I'm coming down with a cold, but it will only last about 24 hours. The big question mark will be on Friday when I may experience some nausea. I did last week but it may have been the chemo and it may have been due to the fact that I waited too long to eat that morning. Then once the bone pain subsides, I should be feeling back to my normal self (relatively speaking). There you go, my "expected" experience for the next two weeks. Here's hoping it is somewhat true to reality, or even better.
I'm feeling pretty positive after today's experience- reinvigorated about how well I am healing and even less scared about radiation. I'm grateful to have wonderful doctors and seeing the light at the end of the tunnel- even if I still have a mastectomy and reconstruction years down the road. Four more weeks- that's it!
We started the morning off meeting with my surgeon. She is really pleased with my response to the chemo and even brought the possibility of a lumpectomy back on the table. It is unlikely and would only be an option if, when we do my MRI following the end of chemo, we find no tumor at all. However, that it was even spoken about as an option made me feel really good. I am still mentally prepared for a mastectomy, but if I could get away with a lumpectomy, that would be awesome. There would be no reconstruction required and that means I would be actually done with the physical part of this process in October/November without a major surgery looming years down the road. The reality though is that the local rate of recurrence is significantly higher in young women who have a lumpectomy as opposed to a mastectomy. So it may not be the right choice, but it feels good to even have it out there as an option.
So, how do I feel? This chemo is definitely different than the first type I was on. If the first cycle was any reasonable indication, here is how I think this cycle will go. Today I had treatment until about 1:40pm. I slept through about half of it because they give me a super dose of benadryl as a pre-medication. Then I woke up, had a snack and read some trashy magazines. I was alone, which was sort of nice because I didn't feel like I needed to entertain anyone. I slept when I wanted, zoned when I wanted, and read when I wanted. Then my sister and family picked me up, we grabbed some lunch and I came home. I ate lunch and napped because the benadryl was still in effect. Tonight I feel pretty good. The benadryl has worn off and the chemo doesn't leave me feeling drugged like the first drugs I was on.
Tomorrow I anticipate feeling pretty decent. I'm sure I'll need a little nap but overall expect to feel fine. Thursday I expect the bone pain to kick in which was tough last week because it was unexpected. I anticipate it being a great deal easier to manage this time because I already have the meds and can catch it early and keep it at bay. This will go on for a few days and I'll be in pain management mode. Unfortunately the pain meds will effect my energy, but the chemo doesn't seem to. Then around Tuesday or Wednesday I'll feel like I'm coming down with a cold, but it will only last about 24 hours. The big question mark will be on Friday when I may experience some nausea. I did last week but it may have been the chemo and it may have been due to the fact that I waited too long to eat that morning. Then once the bone pain subsides, I should be feeling back to my normal self (relatively speaking). There you go, my "expected" experience for the next two weeks. Here's hoping it is somewhat true to reality, or even better.
I'm feeling pretty positive after today's experience- reinvigorated about how well I am healing and even less scared about radiation. I'm grateful to have wonderful doctors and seeing the light at the end of the tunnel- even if I still have a mastectomy and reconstruction years down the road. Four more weeks- that's it!
Monday, May 16, 2011
Chemo round five
Very short and sweet tonight as I need to go to bed. Chemo went well today. The long session is a little brutal, mostly because it starts with a super dose of benedryl to ward off potential allergic reaction. This leaves me loopy tired and then I need to sleep in the super uncomfy chair in a public room. Not my favorite. But I haven't taken any of my "as needed" meds for nausea and feel fine. Still obviously toxic and tired, but much much more mild than on the other drugs. Here is hoping this means a quick and easy recovery and fewer down days! More tomorrow.
Tuesday, May 3, 2011
Chemo Round Four
Yesterday marked the final round of A/C, the half way point of my chemo process, and the fourth round altogether. So far, so good. I was the usual "drugged" feeling all day yesterday but couldn't sleep. I read a book all day cover to cover (which was sort of fun- haven't done that in a long time!) and then finally went to bed at about 9pm. Although I wasn't nauseous, food wasn't terribly appealing either. I did get a good lunch in and at a little something for dinner.
Today I am still quite exhausted, perhaps because I didn't sleep as much yesterday. I did enjoy a morning nap and an afternoon nap though which has helped. Another good nights sleep and I think I'll be back on the mend. Here is hoping that my energy rebounds faster than it did last round.
From the doctor- I am slightly anemic. Not surprising and exactly at the point that they anticipated I would start to really see the effect on my red blood cells. Considering that I run borderline anemic normally, I think this is okay. Plus I can focus on supporting the production of red blood cells in my body now by eating more leafy greens, red meat and drinking chlorophyll water at least once per day. The tumor is still shrinking rapidly. The doctor said that at this point it wouldn't be found on physical exam. She and I can still feel it because we know it is there and approximately where it is, but if I came into an office for a regular exam, it is unlikely that a doctor would find it, and I certainly wouldn't from home. So hopefully after this round, we won't even be able to find it!
There ya have it. I'm still in recovery mode but hopeful that it will go better this time around.
Today I am still quite exhausted, perhaps because I didn't sleep as much yesterday. I did enjoy a morning nap and an afternoon nap though which has helped. Another good nights sleep and I think I'll be back on the mend. Here is hoping that my energy rebounds faster than it did last round.
From the doctor- I am slightly anemic. Not surprising and exactly at the point that they anticipated I would start to really see the effect on my red blood cells. Considering that I run borderline anemic normally, I think this is okay. Plus I can focus on supporting the production of red blood cells in my body now by eating more leafy greens, red meat and drinking chlorophyll water at least once per day. The tumor is still shrinking rapidly. The doctor said that at this point it wouldn't be found on physical exam. She and I can still feel it because we know it is there and approximately where it is, but if I came into an office for a regular exam, it is unlikely that a doctor would find it, and I certainly wouldn't from home. So hopefully after this round, we won't even be able to find it!
There ya have it. I'm still in recovery mode but hopeful that it will go better this time around.
Monday, April 18, 2011
Quickly- chemo round 3
Very quickly an update. I had round three of chemo this morning. The tumor continues to shrink quickly. No size given mostly I think because of the way it is shrinking it is too hard to size! So yay! So far I'm handling it well but it's still early. I followed protocol and ate well, drank lots of water and took my anti- nausea meds before I felt anything. Here's hoping it goes just as well as last time! I will post a more complete update (wig pictures included!) later tonight or tomorrow.
Sending you all wishes for a wonderful day!
Sending you all wishes for a wonderful day!
Thursday, March 17, 2011
Chemo Class
I expected to be writing a post about how freaked out I am because I had my chemotherapy "lesson" today. I was sure that I was going to hear all the facts and figures about what to expect and leave spinning. That, however, is not the case! Yay me! =)
I had some idea in my head that chemotherapy in and of itself was going to be somehow painful. As in while I sit there with poison coursing through my veins I would feel it. Turns out, I shouldn't! So that's good news. The rest of the lesson was about what I expected. Most likely my hair will fall out. My symptoms (the worst of them) should be fatigue and possibly nausea for a couple of days post treatment. I also may experience some bone and joint pain, and possibly neuropathy (pain, tingling and numbness in my extremities), but that is more likely during the second half of treatment when I'm on a different drug.
Anyhow I know it isn't going to be a walk in the park by any means, but I at least feel like I can handle whats to come. Most of the symptoms that I'm expecting are really similar to the yucky parts of pregnancy, and I know what that is like. The only difference is that I don't have a happy event to look forward to at the end- only the absence of a negative event. I'll take it. =)
So my schedule is as follows- labs on Sunday to check my blood counts, chemo on Monday for 2 hours, and a visit with my doctor on the same day. This will happen every other week for 8 weeks (4 total treatments). Then I switch to a different drug, following the same routine for another 8 weeks. This is all assuming that my blood counts stay high enough (which I have faith that they will because we will make a concerted effort using the Cancer Fighting Kitchen to use food items to help with that). If for some reason my blood counts came back too low, they could delay treatment for a couple of days or a week until the counts get back up. The main issue is that if the White Blood Cells are low, I am at high risk for infection (dangerously high). If the Red Blood Cells are low I might need a transfusion. If my Platelets are low, it puts me at risk of bleeding (since this is the clotting agent).
There is your update from Chemo class! =) I ask again to please send me good ju ju on Monday at 8:30 am. See the Chemo attacking the cancer cells, and not my body. See my body directing the chemicals to the invasive cells and protecting the rest of my cells. See the tumor shrinking away to nothing.
I did think of one other thing that people who want to help could do for me. If you knit or sew or crochet, I will need soft (not itchy- probably just cotton) hats for when my hair falls out. If you don't do those things yourself, but you happen to see something out, let me know so I can seek it out. Most of the hats I have are slightly itchy knit caps for cold weather. I figure I will be wearing a lot of hats around the house once my hair falls out. I'll get a wig too I'm sure for more public situations, but those can get pretty itchy and hot, so I know I'll want options (and am just not a scarf girl). =)
Thank you all so much for the love and support you have offered me. It means more than I can express. I am definitely a very lucky person to have such an amazing community surrounding me. =) Silver lining right?
I had some idea in my head that chemotherapy in and of itself was going to be somehow painful. As in while I sit there with poison coursing through my veins I would feel it. Turns out, I shouldn't! So that's good news. The rest of the lesson was about what I expected. Most likely my hair will fall out. My symptoms (the worst of them) should be fatigue and possibly nausea for a couple of days post treatment. I also may experience some bone and joint pain, and possibly neuropathy (pain, tingling and numbness in my extremities), but that is more likely during the second half of treatment when I'm on a different drug.
Anyhow I know it isn't going to be a walk in the park by any means, but I at least feel like I can handle whats to come. Most of the symptoms that I'm expecting are really similar to the yucky parts of pregnancy, and I know what that is like. The only difference is that I don't have a happy event to look forward to at the end- only the absence of a negative event. I'll take it. =)
So my schedule is as follows- labs on Sunday to check my blood counts, chemo on Monday for 2 hours, and a visit with my doctor on the same day. This will happen every other week for 8 weeks (4 total treatments). Then I switch to a different drug, following the same routine for another 8 weeks. This is all assuming that my blood counts stay high enough (which I have faith that they will because we will make a concerted effort using the Cancer Fighting Kitchen to use food items to help with that). If for some reason my blood counts came back too low, they could delay treatment for a couple of days or a week until the counts get back up. The main issue is that if the White Blood Cells are low, I am at high risk for infection (dangerously high). If the Red Blood Cells are low I might need a transfusion. If my Platelets are low, it puts me at risk of bleeding (since this is the clotting agent).
There is your update from Chemo class! =) I ask again to please send me good ju ju on Monday at 8:30 am. See the Chemo attacking the cancer cells, and not my body. See my body directing the chemicals to the invasive cells and protecting the rest of my cells. See the tumor shrinking away to nothing.
I did think of one other thing that people who want to help could do for me. If you knit or sew or crochet, I will need soft (not itchy- probably just cotton) hats for when my hair falls out. If you don't do those things yourself, but you happen to see something out, let me know so I can seek it out. Most of the hats I have are slightly itchy knit caps for cold weather. I figure I will be wearing a lot of hats around the house once my hair falls out. I'll get a wig too I'm sure for more public situations, but those can get pretty itchy and hot, so I know I'll want options (and am just not a scarf girl). =)
Thank you all so much for the love and support you have offered me. It means more than I can express. I am definitely a very lucky person to have such an amazing community surrounding me. =) Silver lining right?
Wednesday, March 9, 2011
I may have an MD at the end of all this...
I feel like I'm gaining so much information through this process, I may qualify for my own doctorate at the end. Okay, maybe not an MD but how about a PhD in cancer, or at the very least a master's degree! =)
The diagnostics are done and we spoke to both my oncologist and surgeon today. First, I spoke with my surgeon who was following up with me regarding my MRI results. She told me that things look good, there is no sign that the cancer is entering the chest wall (which I was a little concerned about since I can feel the tumor pretty deep). She did say that there are two lymphnodes that look a little enlarged so she may have me get another ultrasound to see if they can find them, and if so to biopsy those. When I asked if the PET scan would give us an idea about the lymphnodes too she said yes, if the PET scan shows the area as completely "cold" then we could consider the area safe and I wouldn't need the additional biopsy. I let her know that the PET scan was complete and that the tech told me she should be able to see it online. She then looked it up and very informally said that it looked really good based on her quickly looking- seeing nothing but the known tumor. Of course that is not "news" because very easily a more thorough review could show just a faint glow where those lymphnodes are. So we will hold off on that "news" until we actually get it. The only other news from the MRI is that the tumor is approximately 4cm by 4.4cm. So it is pretty big. As I understand from my online research, once a single tumor reaches 5cm it is officially stage 3 cancer. Just under! phew! Also there appears to be a second small tumor right near the big one, and a small finger growing off the big one. What this information means is that they will definitely want to perform a mastectomy and not just a lumpectomy. If the tumor was the only one, and had totally clean lines there was a chance for a lumpectomy, but frankly the odds of local recurrence with this type of cancer is pretty high anyhow, so we probably would have taken this route regardless.
As for the oncologist, there isn't quite as much news. So we have decided not to pursue the Stanford trial because the doctor didn't feel like it was the best option for me (she wasn't against it, but not really for it either), and at the end of the day, driving down to Stanford for treatment would have really been a huge burden with Isabella. I felt like the quality of life would have really been compromised. That left the local trial if it was available, and the standard care. Well it sounds very much like the chance of the local trial being available isn't very good. So at this point I am assuming that I will just be doing the standard dose dense chemotherapy. I am disappointed and feel a little bit like maybe I am missing out on the best cutting edge treatment, but at the same time trust that I am making the right decision for myself and my family. There is a possibility that I would be allowed to join the trial late (so I may complete one or two weeks of the standard care, and then join the trial with the added drug). I'm not going to count on that (or an even less likely last minute approval of the trial for me to start with it), just because it is better for my mental health to focus on what is, not what might be.
So there you go. Lots of information. I'm hoping to have a better idea of a timeline for fertility after my appointment tomorrow too. Movement- it feels good. So start sending me "no hair loss" vibes now so that maybe, just maybe my hair won't fall out during chemo!
The diagnostics are done and we spoke to both my oncologist and surgeon today. First, I spoke with my surgeon who was following up with me regarding my MRI results. She told me that things look good, there is no sign that the cancer is entering the chest wall (which I was a little concerned about since I can feel the tumor pretty deep). She did say that there are two lymphnodes that look a little enlarged so she may have me get another ultrasound to see if they can find them, and if so to biopsy those. When I asked if the PET scan would give us an idea about the lymphnodes too she said yes, if the PET scan shows the area as completely "cold" then we could consider the area safe and I wouldn't need the additional biopsy. I let her know that the PET scan was complete and that the tech told me she should be able to see it online. She then looked it up and very informally said that it looked really good based on her quickly looking- seeing nothing but the known tumor. Of course that is not "news" because very easily a more thorough review could show just a faint glow where those lymphnodes are. So we will hold off on that "news" until we actually get it. The only other news from the MRI is that the tumor is approximately 4cm by 4.4cm. So it is pretty big. As I understand from my online research, once a single tumor reaches 5cm it is officially stage 3 cancer. Just under! phew! Also there appears to be a second small tumor right near the big one, and a small finger growing off the big one. What this information means is that they will definitely want to perform a mastectomy and not just a lumpectomy. If the tumor was the only one, and had totally clean lines there was a chance for a lumpectomy, but frankly the odds of local recurrence with this type of cancer is pretty high anyhow, so we probably would have taken this route regardless.
As for the oncologist, there isn't quite as much news. So we have decided not to pursue the Stanford trial because the doctor didn't feel like it was the best option for me (she wasn't against it, but not really for it either), and at the end of the day, driving down to Stanford for treatment would have really been a huge burden with Isabella. I felt like the quality of life would have really been compromised. That left the local trial if it was available, and the standard care. Well it sounds very much like the chance of the local trial being available isn't very good. So at this point I am assuming that I will just be doing the standard dose dense chemotherapy. I am disappointed and feel a little bit like maybe I am missing out on the best cutting edge treatment, but at the same time trust that I am making the right decision for myself and my family. There is a possibility that I would be allowed to join the trial late (so I may complete one or two weeks of the standard care, and then join the trial with the added drug). I'm not going to count on that (or an even less likely last minute approval of the trial for me to start with it), just because it is better for my mental health to focus on what is, not what might be.
So there you go. Lots of information. I'm hoping to have a better idea of a timeline for fertility after my appointment tomorrow too. Movement- it feels good. So start sending me "no hair loss" vibes now so that maybe, just maybe my hair won't fall out during chemo!
Tuesday, March 8, 2011
Diagnostics Done!
Hooray! Today I completed all of the diagnostics for my cancer. I will still do the genetic test to confirm whether or not I carry one of the two breast cancer genes (we think not, but you never know), but all of the actual tests that affect my current diagnosis and prognosis are done! I'm amazed at how grueling that process really was. It all started with the biopsy. Then I had the follow up mammogram and ultrasound on both breasts and surrounding area. Next came the bloodwork. The MRI happened after that, and today, I finished everything up with a PET scan. Phew- that was a lot.
Gratefully the PET scan was "no big deal" for me. They took me to the special CT trailer, hooked me up to an IV for some Fluorodeoxyglucose which is the radioactive material that the scanner uses to see heightened metabolic function (which would indicate cancer). I then had to sit for about an hour while the material worked its way through my body. I couldn't even play on my phone because that could affect how it settled! Then they put me in the machine for a baseline CT scan, put some Iodine into my IV, and then ran the PET scan (which is just the same as a CT scan, only longer). I was in the machine for about 40 minutes total. MUCH more comfortable than the MRI. Other than the normal response to the various IV materials (cool at first and warm from the Iodine), I didn't feel a thing.
I don't have any results to report, though they sent me away with a disk of the image. Yes I've looked- it is very very intersting, but I really don't want to even pretend to guess at the results. My gut tells me it looks fine, but too soon to tell. I can however call my doctor tomorrow for results. They should have the MRI results too. With all of this I can just focus on my fertility stuff, and then move on to chemo! Making progress folks.
Gratefully the PET scan was "no big deal" for me. They took me to the special CT trailer, hooked me up to an IV for some Fluorodeoxyglucose which is the radioactive material that the scanner uses to see heightened metabolic function (which would indicate cancer). I then had to sit for about an hour while the material worked its way through my body. I couldn't even play on my phone because that could affect how it settled! Then they put me in the machine for a baseline CT scan, put some Iodine into my IV, and then ran the PET scan (which is just the same as a CT scan, only longer). I was in the machine for about 40 minutes total. MUCH more comfortable than the MRI. Other than the normal response to the various IV materials (cool at first and warm from the Iodine), I didn't feel a thing.
I don't have any results to report, though they sent me away with a disk of the image. Yes I've looked- it is very very intersting, but I really don't want to even pretend to guess at the results. My gut tells me it looks fine, but too soon to tell. I can however call my doctor tomorrow for results. They should have the MRI results too. With all of this I can just focus on my fertility stuff, and then move on to chemo! Making progress folks.
Wednesday, March 2, 2011
Babies babies babies
Today Nick and I spent 8 hours going to, coming from and surviving doctors appointments. The first half of the day was a visit to the Fertility Preservation Clinic at UCSF. The second appointment was with my Oncologist.
The fertility appointment was a "dream" appointment (as much as anything can be a "dream" under these circumstances). We met with the doctor, he explained how fertility works, how the chemotherapy affects fertility, and what my options are. Then he took us into the exam room to check my ovaries for eggs. This is where the good news comes in. He "conservatively" estimated that I currently have 18 eggs in this cycle. This is an outstanding number and indicates that I am what we refer to as a fertile myrtle. =) This bodes well for my ability to get pregnant the old fashioned way post cancer. But since there is still a risk, Nick and I decided to move forward with the cryogenic freezing of embryos. This means I am now not only a cancer patient, but also an "infertility" patient. I begin my fertility drug regimen tomorrow night which involves me giving myself two shots every night. Then in approximately 10-12 days we will harvest the eggs and they will use intracytoplasmic sperm injection (ICSI) to turn my eggs into embryos. This process means they take one sperm and inject it directly into the egg to ensure fertilization (as opposed to just putting the eggs and sperm into a dish and letting them fertilize the semi old fashioned way). Based on the information we gathered today, the doctor thinks we could have as many as 15 embryos to freeze and ultimately transfer via IVF. That is a really great amount, especially since you really only need a couple for each transfer. We could create our own clan! =)
Then our second appointment was with my oncologist. I feel a little bit like we left with more questions than answers, but I'll tell you what I know. As I previously mentioned, we are starting with chemotherapy. I was under the impression that they wanted to send me to Stanford for a trial, but it is looking less likely that this will happen. I have a decision to make actually. The cancer center that I am working with is hopefully starting a trial of their own in the next 2-3 weeks that I could participate in. This would combine the standard of care for breast cancer along with the trial drug (I'll elaborate on this in a moment). If they do not get it started in time, I will not be able to participate because my doctor does not want to delay my treatment. In this case, we would have to decide between the standard of care on its own, or the Stanford trial, which uses different chemo drugs along with the trial drug.
The standard of care (according to my doctor) is called dose dense chemotherapy. This would involve me receiving two IV drugs once every two weeks for eight weeks (four cycles), and then one different drug once every two weeks for eight weeks (an additional four cycles). All in all this totals 16 weeks of chemotherapy treatment, which should mean I will be done by the end of June or beginning of July. If I participate in the trial the change would be the addition of a drug called a Parp-1 inhibitor, which is apparently extremely effective in cases of Triple Negative cancer (just not currently used and approved for the first line of defense, only for subsequent treatments). Also the second set of treatments would be every week at a lower dose. The Stanford trial uses a different set of drugs than the standard of care. I also am not sure if our health insurance would cover it (Stanford is out of network we believe, and it is "experimental" to boot). My oncologist doesn't seem to have a strong opinion outside of using standard of care (supported by statistics) and the parp-1 inhibitor (cutting edge drug for this type of cancer). So I have some decisions to make if I can't participate in the local trial (which I am really hoping I can at this point).
Once I complete my chemotherapy, I will still have surgery 4-8 weeks later. They are still advising a mastectomy because of the type of cancer that I have. Even if I have an amazing pathological response to the chemo and there is zero cancer left after, there is just too much data showing recurrence of this type of cancer if the tissue isn't removed. My doctor did acknowledge that the data is based on studies with chemo over the last 10-15 years. The drugs are much much better now, so it is possible that the data they are using isn't fully relevant today. I am leaning towards just going with the (single) mastectomy because it really isn't worth the risk. If I had no desire whatsoever to breastfeed even a little with future babies (you only need one breast!) I would probably let them cut them both out and get a nice new pair of tatas. =) But I am not really a believer in surgery for surgery's sake and at this point there is no indication for that.
So there you go! I still have an MRI (to best measure the tumor) and a PET scan (to verify no other cancerous activity anywhere in my body) before we call the diagnostics complete. Slowly but surely the fact finding is winding down and we are approaching action. Thank goodness. As totally exhausted as I was today from all of our appointments, I am grateful to have them out of the way. There will be plenty more to come (especially with the fertility treatments) but we will get there.
The fertility appointment was a "dream" appointment (as much as anything can be a "dream" under these circumstances). We met with the doctor, he explained how fertility works, how the chemotherapy affects fertility, and what my options are. Then he took us into the exam room to check my ovaries for eggs. This is where the good news comes in. He "conservatively" estimated that I currently have 18 eggs in this cycle. This is an outstanding number and indicates that I am what we refer to as a fertile myrtle. =) This bodes well for my ability to get pregnant the old fashioned way post cancer. But since there is still a risk, Nick and I decided to move forward with the cryogenic freezing of embryos. This means I am now not only a cancer patient, but also an "infertility" patient. I begin my fertility drug regimen tomorrow night which involves me giving myself two shots every night. Then in approximately 10-12 days we will harvest the eggs and they will use intracytoplasmic sperm injection (ICSI) to turn my eggs into embryos. This process means they take one sperm and inject it directly into the egg to ensure fertilization (as opposed to just putting the eggs and sperm into a dish and letting them fertilize the semi old fashioned way). Based on the information we gathered today, the doctor thinks we could have as many as 15 embryos to freeze and ultimately transfer via IVF. That is a really great amount, especially since you really only need a couple for each transfer. We could create our own clan! =)
Then our second appointment was with my oncologist. I feel a little bit like we left with more questions than answers, but I'll tell you what I know. As I previously mentioned, we are starting with chemotherapy. I was under the impression that they wanted to send me to Stanford for a trial, but it is looking less likely that this will happen. I have a decision to make actually. The cancer center that I am working with is hopefully starting a trial of their own in the next 2-3 weeks that I could participate in. This would combine the standard of care for breast cancer along with the trial drug (I'll elaborate on this in a moment). If they do not get it started in time, I will not be able to participate because my doctor does not want to delay my treatment. In this case, we would have to decide between the standard of care on its own, or the Stanford trial, which uses different chemo drugs along with the trial drug.
The standard of care (according to my doctor) is called dose dense chemotherapy. This would involve me receiving two IV drugs once every two weeks for eight weeks (four cycles), and then one different drug once every two weeks for eight weeks (an additional four cycles). All in all this totals 16 weeks of chemotherapy treatment, which should mean I will be done by the end of June or beginning of July. If I participate in the trial the change would be the addition of a drug called a Parp-1 inhibitor, which is apparently extremely effective in cases of Triple Negative cancer (just not currently used and approved for the first line of defense, only for subsequent treatments). Also the second set of treatments would be every week at a lower dose. The Stanford trial uses a different set of drugs than the standard of care. I also am not sure if our health insurance would cover it (Stanford is out of network we believe, and it is "experimental" to boot). My oncologist doesn't seem to have a strong opinion outside of using standard of care (supported by statistics) and the parp-1 inhibitor (cutting edge drug for this type of cancer). So I have some decisions to make if I can't participate in the local trial (which I am really hoping I can at this point).
Once I complete my chemotherapy, I will still have surgery 4-8 weeks later. They are still advising a mastectomy because of the type of cancer that I have. Even if I have an amazing pathological response to the chemo and there is zero cancer left after, there is just too much data showing recurrence of this type of cancer if the tissue isn't removed. My doctor did acknowledge that the data is based on studies with chemo over the last 10-15 years. The drugs are much much better now, so it is possible that the data they are using isn't fully relevant today. I am leaning towards just going with the (single) mastectomy because it really isn't worth the risk. If I had no desire whatsoever to breastfeed even a little with future babies (you only need one breast!) I would probably let them cut them both out and get a nice new pair of tatas. =) But I am not really a believer in surgery for surgery's sake and at this point there is no indication for that.
So there you go! I still have an MRI (to best measure the tumor) and a PET scan (to verify no other cancerous activity anywhere in my body) before we call the diagnostics complete. Slowly but surely the fact finding is winding down and we are approaching action. Thank goodness. As totally exhausted as I was today from all of our appointments, I am grateful to have them out of the way. There will be plenty more to come (especially with the fertility treatments) but we will get there.
Monday, February 28, 2011
Sigh of Relief
Aside from the obvious factual good news aspect of this, it also has done wonders on my outlook. I feel as though a mountain has been lifted off my shoulders. Yes, I just received probably some of the worst news I could have thought of that was against all odds. But I am slowly regaining some sense of strength to deal with this news, and today was a gigantic stride in that direction. Now I feel like "one lump? Pshhh- I can handle that!"
So the positivity returns. =)
Friday, February 25, 2011
Sharing The News
I just sent an email sharing our terrible, horrible, no good, very bad news. It has all of the information in it that we know so far, so instead of writing a whole blog post on that, I am just going to copy the email.
Somebody please pinch me and wake me up from this nightmare.
Dearest Family and Friends,
This past week I received some news that has turned our world upside down and then some. I'm sorry to be sending this in an email, but I simply don't have it in me to have this conversation repeatedly, so please bear with me in this impersonal format.
On Thursday afternoon, February 24th, I was diagnosed with breast cancer.
I still have more questions than answers regarding this, but here is what I know:
Somebody please pinch me and wake me up from this nightmare.
Dearest Family and Friends,
This past week I received some news that has turned our world upside down and then some. I'm sorry to be sending this in an email, but I simply don't have it in me to have this conversation repeatedly, so please bear with me in this impersonal format.
On Thursday afternoon, February 24th, I was diagnosed with breast cancer.
I still have more questions than answers regarding this, but here is what I know:
- It is ductal breast cancer which is the most common.
- It is about the size of a ping pong ball in my right breast.
- It is "triple negative" which means: "These subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three "receptors" known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). The most successful treatments for breast cancer target these receptors. Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name "triple negative breast cancer." On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer." (http://www.tnbcfoundation.org/understandingtnbc.htm)
- It was given a grade of 3 which means: "Based on the microscopic appearance of cancer cells, pathologists commonly describe tumor grade by four degrees of severity: Grades 1, 2, 3, and 4. The cells of Grade 1 tumors resemble normal cells, and tend to grow and multiply slowly. Grade 1 tumors are generally considered the least aggressive in behavior. Conversely, the cells of Grade 3 or Grade 4 tumors do not look like normal cells of the same type. Grade 3 and 4 tumors tend to grow rapidly and spread faster than tumors with a lower grade." (http://www.cancer.gov/cancertopics/factsheet/detection/tumor-grade) As I understand it from my pathology report, the cells do not look like their "normal" cell state and are really fast growing.
- We do not yet have a "stage" for the cancer which tells us how far advanced into the body it is. We have additional diagnostics to complete before we will know that. Currently the belief is that we caught this early which should mean it will be an early stage.
- First things first, we need to gather all of the information. I have already had two ultrasounds and a biopsy of the mass. That is how we know what we know currently.
- Monday I will get additional ultrasound imaging of both breasts and the lymph nodes as well as diagnostic mammograms.
- Next Monday I will get an MRI.
- Sometime in the next week I will get a PET scan to confirm there is no cancer anywhere else in my body.
- I am working with the Fertility Preservation Center at UCSF in an effort to ensure our ability to expand our family once I've beaten this. Isabella needs a sibling after all (once we know her mommy is healthy again!). We aren't sure exactly what protocol we will follow but my age and known fertility are in my favor.
- We will start with Chemotherapy since this type of cancer is most receptive to it. Once the Chemo is complete (approx 4-5 months) the mass will be surgically removed.
- We are not sure which chemo will be used yet since we still don't have a complete prognosis/diagnosis. However, based on the information we have to date, the doctors think they want me on a trial through Stanford that is supposed to be highly effective and less brutal on my system.
I probably won't email frequent updates, but if you are interested, I will definitely keep writing in our family blog to let everyone know how we are doing and what is going on. You can follow that here: http://ourgauthierfamily.blogspot.com/
All our love,
Karey, Nick and Isabella
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