Robin just had her third chemotherapy infusion Monday. Her second infusion had her in bed for 3 & 1/2 days with nausea and extreme fatigue. Both of my parents came to help out during her worst days. They helped keep Robin comfortable and gave our kids a great amount of attention that they crave so much. It was a great visit and we all appreciated having them here to help. After her bad week, Robin was grateful for the good days that she was able to enjoy after that leading up to this week.
Wednesday, Thursday, and Friday will be her low point for this cycle. She spent most of the day in bed with little energy to do much else. This time, however, she will be getting IV fluids at home for hydration that will hopefully help get her through the week. The nausea that she has experienced after the first two cycles is much less this time. And the mouth sores have been much better since her first cycle.
Everyone, including me, likes to tell her that she is "over halfway" or "only one more to go," but when she gets this low it's hard to have that mindset. After the second cycle she said that it was her last and she would be done. Then she pulled herself back up and continued the fight.
My Robin is amazing through all of this. She has yet to give up any family management that she has always taken care of. Sick or not, she is keeping the kids and me scheduled and on task. Her fourth and final chemo is tentatively scheduled for Friday, July 5th. The following Saturday, July 13th, many of us are participating in the Ride for Alive! charity bike ride here in Skaneateles to benefit cancer survivor programs. I have recruited a team to ride together for this charity. We would like to celebrate Robin completing her fight with breast cancer by raising money in her honor to help cancer survivors live better lives. If you are interested, please consider joining our team to ride or volunteer or making a donation to help me reach my personal fundraising goal (see link below).
http://www.rideforalive.org/site/TR/Events/General?px=1002585&pg=personal&fr_id=1040
Wednesday, June 19, 2013
Saturday, May 25, 2013
Update Before Chemo Cycle #2
It has been 17 days since Robin's first cycle of chemotherapy . We wanted to give everyone an update on what has been happening since it's been a while.
She had only a little nausea three to four days after her first cycle. After that, she bounced back pretty well. She does have some fatigue, which comes along with the chemo but nothing really bad so far.
This past week her hair started thinning so she decided to go ahead and get it buzzed off. She hated having to pull out handfuls all day. Cader has been helping her get it all out with a sticky tape lint roller. The hair was a tough emotional issue for her but she is getting through it well. Robin is also starting to have some ulcers in her mouth that is making it difficult to enjoy her favorite foods. Otherwise, she is staying strong and being really tough, mentally and physically.
I continued to be amazed by her strength and perseverance through all of this. She is truly a wonderful girl. She is also still receiving lots of love and support from friends and family, especially our three boys lately. Robin unknowingly is teaching the boys how to stay strong and focused and not give up.
This coming Tuesday is cycle number two of chemotherapy...
She had only a little nausea three to four days after her first cycle. After that, she bounced back pretty well. She does have some fatigue, which comes along with the chemo but nothing really bad so far.
This past week her hair started thinning so she decided to go ahead and get it buzzed off. She hated having to pull out handfuls all day. Cader has been helping her get it all out with a sticky tape lint roller. The hair was a tough emotional issue for her but she is getting through it well. Robin is also starting to have some ulcers in her mouth that is making it difficult to enjoy her favorite foods. Otherwise, she is staying strong and being really tough, mentally and physically.
I continued to be amazed by her strength and perseverance through all of this. She is truly a wonderful girl. She is also still receiving lots of love and support from friends and family, especially our three boys lately. Robin unknowingly is teaching the boys how to stay strong and focused and not give up.
This coming Tuesday is cycle number two of chemotherapy...
Sunday, May 12, 2013
Wednesday, May 8, 2013
Chemo cycle #1
The port is in and the first cycle of chemo is almost done. Everything today went smooth. Robin is very exhausted from the last couple of days but is doing well.
Monday, May 6, 2013
Chemo fail
The peripheral IV failed that Robin had for her first chemo infusion today. Three other infusion nurses tried to stick her to get access but had no luck. Robin absolutely hates being stuck so now she will be getting a port placed Wednesday afternoon with chemo right after. No more fishing for her veins after that.
Sunday, April 28, 2013
Two Months
Today marks two months since we found out Robin had breast cancer. At this point she is cancer free and will be starting chemotherapy next week.
What we now realize is how important it was that she was able to have surgery first. We initially were considering neoadjuvant chemotherapy, which is receiving drug treatment before any surgery. Doing this, however, would cloud the issue of possible lymph node involvement and the tumor margins (chemo may have cleared affected lymph nodes and decreased the tumor size). If she received chemotherapy first, she would have received a 3-drug regimen over six months and would have needed radiation. But with surgery first confirming clear lymph nodes and margins, she only has to have a 2-drug regimen over three months and no radiation. Robin feels very fortunate to have had the surgery quickly so that she did not have to be exposed to unnecessary treatment.
What we now realize is how important it was that she was able to have surgery first. We initially were considering neoadjuvant chemotherapy, which is receiving drug treatment before any surgery. Doing this, however, would cloud the issue of possible lymph node involvement and the tumor margins (chemo may have cleared affected lymph nodes and decreased the tumor size). If she received chemotherapy first, she would have received a 3-drug regimen over six months and would have needed radiation. But with surgery first confirming clear lymph nodes and margins, she only has to have a 2-drug regimen over three months and no radiation. Robin feels very fortunate to have had the surgery quickly so that she did not have to be exposed to unnecessary treatment.
Tuesday, April 23, 2013
Chemotherapy Plan
We arrived back home from Boston this evening. It is a long drive to go over and back in two days but Robin and I enjoy our alone time during these trips.
This morning we met with the medical oncologist at Dana-Farber. She explained that the cancer is HER2 negative, based on the more extensive pathology testing that we were waiting on. It's nice to finally put this issue to rest. Remember the initial pathology results from the biopsy looked like it was HER2 positive. The difference is that they were able to look at a larger sample with a more advanced test.
She also told us that Robin had the option of not getting any chemotherapy based on all of these results. However, she advised that the most aggressive approach is to get a 2-drug regimen. Robin decided that this is what she needed to do. The chemo will be once every three weeks for a total of four cycles. Earlier we thought that she may need eight cycles over six months, followed by an additional six months of Herceptin. Now getting just four cycles and no Herceptin, we are down to just three months! Chemotherapy also does not have to start as soon as we initially thought. It will probably start in the first week or so of May.
After this appointment we went over to the plastic surgery office to get the first fill of saline for the tissue expanders. Robin was pretty nervous about this and was worried it would be painful. To her relief, it went very smooth and she had no discomfort at all.
Given that the cancer was throughout the breast and not catching it very early, we feel like we now have the best case scenario going forward. Robin was excited to explain to Cader how she may be done with all of this, including her final reconstruction surgery, by his birthday in September.
This morning we met with the medical oncologist at Dana-Farber. She explained that the cancer is HER2 negative, based on the more extensive pathology testing that we were waiting on. It's nice to finally put this issue to rest. Remember the initial pathology results from the biopsy looked like it was HER2 positive. The difference is that they were able to look at a larger sample with a more advanced test.
She also told us that Robin had the option of not getting any chemotherapy based on all of these results. However, she advised that the most aggressive approach is to get a 2-drug regimen. Robin decided that this is what she needed to do. The chemo will be once every three weeks for a total of four cycles. Earlier we thought that she may need eight cycles over six months, followed by an additional six months of Herceptin. Now getting just four cycles and no Herceptin, we are down to just three months! Chemotherapy also does not have to start as soon as we initially thought. It will probably start in the first week or so of May.
After this appointment we went over to the plastic surgery office to get the first fill of saline for the tissue expanders. Robin was pretty nervous about this and was worried it would be painful. To her relief, it went very smooth and she had no discomfort at all.
Given that the cancer was throughout the breast and not catching it very early, we feel like we now have the best case scenario going forward. Robin was excited to explain to Cader how she may be done with all of this, including her final reconstruction surgery, by his birthday in September.
Thursday, April 18, 2013
Boston Trip Postponed, Radiation, and Drains
We are not travelling to Boston today. The HER2 analysis from the outside lab is not yet finalized. The medical oncologist at Dana-Farber did not want to meet yet without this information. The HER2 status will determine what her therapy plan will be.
The surgical oncologist also called Robin this week about radiation therapy. She presented Robin's case to an oncology panel there (surgical oncologists, radiation oncologists, medical oncologists and pathologists) and everyone was in agreement that radiation was NOT recommended. This is very good news for us.
And this past Monday Robin was finally able to have her drains removed. She feels so much more comfortable now and is able to take showers (we are all thankful for that!). Although she is still fairly sore, she is doing better each day now.
Now we plan to go to Boston this coming Tuesday for the rescheduled medical oncology appointment and another follow-up with the plastic surgeon's office.
Friday, April 12, 2013
Surgical Follow-Up News
We are back home from Boston once again. Robin had a scheduled follow-up with the plastic surgeon Thursday afternoon. We were also able to meet with the surgical oncologist (who performed the mastectomy) and review the final pathology results, which answered many of our questions.
Most importantly, the lymph nodes were confirmed negative. No cancer was found in the right breast. There were three total tumors in the left breast: 3cm, 1.6cm, and 0.8cm. Robin's three tumors were "invasive" or "infiltrating" ductal carcinoma, or cancer that has already broken through the milk duct. She also had many areas of DCIS throughout the left breast. DCIS, or ductal carcinoma in situ, is early stage 0 cancer that is confined to the individual milk ducts. These are areas that over time can become "invasive" tumors. Considering all of this, it looks like we are dealing with stage IIa breast cancer.
Before the surgery, the surgical oncologist said that she would need remove breast tissue as close as possible to the skin on the front of the breast because the tumor seemed to be close. After she did this in surgery, she was concerned that she had to get so close that some of the skin may not have enough blood supply and would possibly die. This would cause problems and make the reconstruction more complicated. The plastic surgeon was also concerned that the blood flow would not be adequate after he completed his part of the surgery, although he was cautiously optimistic. Everyone agreed that aggressive removal of all possible tumor was the priority over cosmetic concerns. The pathology indicated that the tumor did indeed extend all the way to the edge of the removed tissue. The surgical oncologist was very confident that she had "hugged" the skin during the procedure so closely that there would be no breast tissue left behind. The good news now is that the cancer was fully removed AND the skin did not die in this area. The plastic surgeon said this was no longer a concern, everything looked excellent and Robin was healing very well.
The bad news for Robin was that the drains were not quite ready to be removed. The drainage has not yet decreased enough. Hopefully they are ready by Monday morning, when we are scheduled to see a plastic surgeon in Syracuse that has agreed to help us.
The general criteria for receiving radiation is having lymph node involvement (Robin has none), size of largest tumor over 3-5cm (Robin is 3cm), and having little to no clear margins around the removed tumor. Not having a clear margin is the issue that may indicate radiation for her. Robin's was not necessarily clear but the surgical oncologist was convinced that this is because they was no more tissue beyond that could possibly be taken out. In fact, she said that she plans to reach out to the radiation oncologist and explain how thorough she was in surgery. She wants to make sure they take that into account when reviewing the case and advising on the need for radiation. Her opinion is that radiation will not be necessary.
Next Thursday we find our way back to Boston to meet with the medical oncologist. This is where we will review all of the information and determine the next phase of treatment, including chemotherapy and the possibility of radiation.
This is finally starting to feel like a much more manageable situation for us. It went from one tumor to three tumors to six tumors, then maybe one large 7cm mass to the very scary possibility of stage IV metastatic disease in her spine to what we know today. I guess it's better to go in that direction than the opposite. The high points of the stress and anxiety of not knowing are hopefully behind us now. We went from being legitimately concerned for her life and leaving her family, especially our three boys, to now dealing with uncomfortable drains and the upcoming hair loss. Now that she knows this is something she can fight and win, she is ready to give it her all. Robin is the most amazing person I know. She is an unbelievable wife, mother and friend and I know that she will also become an awesome breast cancer survivor.
Sunday, April 7, 2013
Back at Home
We made it back home from Boston Saturday afternoon. Everyone was glad to be back in Skaneateles. Robin is recovering well but she hates the two drains that are in place. They exit under each armpit and are extremely painful and uncomfortable. She is not able to do much for herself and this is really discouraging to her. Hopefully they can be removed later this week.
The kids had a great time in Boston. They got to visit the Science Museum twice, the Children's Museum, the Boston Duck Tour, and other neat places. It really was a nice getaway for them while we were dealing with the hospital and recovery.
More information about the actual surgery...the breast surgeon said she was not able to visualize the tumor well when she removed it. She has to get the pathology report to determine what size tumor we are dealing with. Final pathology results should be available sometime this week. If the lymph nodes are confirmed negative and the tumor is not large, Robin should not have to have any radiation therapy.
So this coming Thursday morning we are leaving again for Boston to meet with plastic surgeon for a follow-up appointment. We plan to spend the night and come back Friday.
And the following Thursday (April 18th), we will go back to Boston to meet with the oncologist there to decide on the treatment plan. Most likely, the chemotherapy will begin shortly after this visit. We plan to get the chemotherapy administered locally at her oncology office in Syracuse.
The kids had a great time in Boston. They got to visit the Science Museum twice, the Children's Museum, the Boston Duck Tour, and other neat places. It really was a nice getaway for them while we were dealing with the hospital and recovery.
More information about the actual surgery...the breast surgeon said she was not able to visualize the tumor well when she removed it. She has to get the pathology report to determine what size tumor we are dealing with. Final pathology results should be available sometime this week. If the lymph nodes are confirmed negative and the tumor is not large, Robin should not have to have any radiation therapy.
So this coming Thursday morning we are leaving again for Boston to meet with plastic surgeon for a follow-up appointment. We plan to spend the night and come back Friday.
And the following Thursday (April 18th), we will go back to Boston to meet with the oncologist there to decide on the treatment plan. Most likely, the chemotherapy will begin shortly after this visit. We plan to get the chemotherapy administered locally at her oncology office in Syracuse.
Wednesday, April 3, 2013
Tuesday, April 2, 2013
Monday, April 1, 2013
Surgical Success!
The breast surgeon said her part was a success. She biopsied three lymph nodes and preliminary results are that they are negative (to be confirmed by further pathology later). She could not estimate the tumor size at this time until the pathologists look at it. Hopefully this means she can avoid radiation.
The plastic surgeon felt good about his part of the surgery as well.
She is waking up now. I will get to see her soon.
Sunday, March 31, 2013
Saturday, March 30, 2013
Some friends from here in Skaneateles had a very memorable pre-surgery gathering for me Thursday night. Thank you Anne and several other friends for putting together a beautiful night. Seeing so many special people and feeling the love and support I have around me is beyond words. I will take that energy with me as I fight this cancer. I am so blessed to have so many people who will be strong for me when I will be feeling weak.
One month after finding out I have cancer, my treatment will begin with surgery on Monday. I am nervous about my first ever surgery, but I know it is the first step in this long fight.
One month after finding out I have cancer, my treatment will begin with surgery on Monday. I am nervous about my first ever surgery, but I know it is the first step in this long fight.
Thursday, March 28, 2013
Tuesday, March 26, 2013
Upcoming Surgery
Robin just had her pre-op appointments in Boston today. All went well and everything is in place for the bilateral mastectomy and reconstruction scheduled at 11:30am next Monday, April 1st. She will be at the Brigham and Women's Hospital, which is where the surgeons affiliated with Dana-Farber Cancer Institute operate. They expect Robin to be in the hospital for 3-4 days.
Our plan is to leave for Boston this coming Sunday afternoon. We are taking the kids with us and plan to stay in Boston all week. Robin's parents and sisters will be in Boston with us also.
Thank you all so much for the love and support.
Our plan is to leave for Boston this coming Sunday afternoon. We are taking the kids with us and plan to stay in Boston all week. Robin's parents and sisters will be in Boston with us also.
Thank you all so much for the love and support.
Friday, March 15, 2013
Thank You!
I wanted to thank all of you for your love and support, prayers and positive thoughts. I have never been as overwhelmed and scared as I have been for the past two weeks. Hearing from you and knowing so many thoughts and prayers are coming my way really means the world to me. I also know your thoughts and prayers worked. I am extremely relieved to know I do not have metastatic breast cancer. Dr. Rhei said yesterday that she would give me knowledge so I will not be as scared and can make decisions that are best. I couldn't agree more. I have knowledge about what I am dealing with and I know I want to be as aggressive as possible to survive this so we now have a plan of attack. I know this is going to be a very long, hard road ahead for me and my family, but I will fight as hard as I can. I have no other option. It is easier to fight knowing I am lucky enough to have so many great people in my corner. I have a little over 2 weeks until surgery, which allows me time to do things that will be on hold for quite some time while I fight this. I am also very happy to have this time to spend with my boys while I am feeling well and find strength now more than I have ever needed. It is not easy do "normal" activities knowing I still have cancer, but I will make the most of it for my boys.
I appreciate you more than you can ever know.
Love,
Robin
I appreciate you more than you can ever know.
Love,
Robin
Thursday, March 14, 2013
The Plan
Finally we are back home from our extended Boston trip and we have a plan. The doctors there all agree that surgery first, to evaluate lymph node involvement, is the best course of action. We stayed the extra day so that we could meet the plastic surgeon for the initial consult.
After all of the appointments at Dana-Farber / Brigham and Women's, Robin feels that Boston is where she needs to have the surgery. The surgical oncologist who will be doing the mastectomy and the plastic surgeon were able to get everything scheduled for April 1st.
Robin has decided to be aggressive and have a bilateral mastectomy. Also, the first phase of reconstruction is planned for the same time. If the surgery goes well as expected, chemotherapy could begin in as little as three weeks after.
She will have to travel back to Boston sometime in the next week or two for the pre-op appointment. Surgery is planned for April 1st. After discharge, she will be returning to Boston for follow-up appointments.
I often refer to my Robin as a "plan freak." And she is in much better spirits now that she has her plan in place. We are all very excited about our upcoming Spring Break 2013 - Boston Mastectomy!
After all of the appointments at Dana-Farber / Brigham and Women's, Robin feels that Boston is where she needs to have the surgery. The surgical oncologist who will be doing the mastectomy and the plastic surgeon were able to get everything scheduled for April 1st.
Robin has decided to be aggressive and have a bilateral mastectomy. Also, the first phase of reconstruction is planned for the same time. If the surgery goes well as expected, chemotherapy could begin in as little as three weeks after.
She will have to travel back to Boston sometime in the next week or two for the pre-op appointment. Surgery is planned for April 1st. After discharge, she will be returning to Boston for follow-up appointments.
I often refer to my Robin as a "plan freak." And she is in much better spirits now that she has her plan in place. We are all very excited about our upcoming Spring Break 2013 - Boston Mastectomy!
Spine MRI Results
We just woke up to a phone call from the oncologist here saying the MRI was completely clear of cancer!
Now we will be leaving as soon as we are done with our plastic surgery appointment.
Now we will be leaving as soon as we are done with our plastic surgery appointment.
Wednesday, March 13, 2013
Day Two
Robin had the MRI earlier today and we should have results tomorrow. We are staying in Boston again tonight to see a plastic surgeon Thursday. Thanks for everything.
Tuesday, March 12, 2013
Dana-Farber Day One
We met with both a surgical oncologist and a medical oncologist today in Boston. First, we have to get a MRI tomorrow of her spine to evaluate the area that showed up yesterday on the PET scan. They do not think this is cancer but believe it is prudent to get MRI to rule it out. We need those results to move forward with a plan.
We also found out the tumor is HER2 +. This means that it is more aggressive, BUT there are targeted drugs that can now be used.
The medical oncologist also wants to ask the opinion of the radiation oncologist to help decide chemo versus surgery first. They may need to look for lymph node involvement from surgery to decide about radiation. Or, they may say she needs radiation regardless of lymph node involvement. In that case, we would get chemo first.
So we are staying longer than we thought for thr MRI tomorrow at 2pm. We also may try to get a consult with plastic surgery while we are here.
We were very impressed with the two doctors here today. A plan will be figured out over the next couple of days.
Robin and I are having a beer and hanging out together tonight at the hotel. We have alot of things to process. We will follow up with everyone later.
We also found out the tumor is HER2 +. This means that it is more aggressive, BUT there are targeted drugs that can now be used.
The medical oncologist also wants to ask the opinion of the radiation oncologist to help decide chemo versus surgery first. They may need to look for lymph node involvement from surgery to decide about radiation. Or, they may say she needs radiation regardless of lymph node involvement. In that case, we would get chemo first.
So we are staying longer than we thought for thr MRI tomorrow at 2pm. We also may try to get a consult with plastic surgery while we are here.
We were very impressed with the two doctors here today. A plan will be figured out over the next couple of days.
Robin and I are having a beer and hanging out together tonight at the hotel. We have alot of things to process. We will follow up with everyone later.
Made it to Boston
We just checked in to the hotel in Boston. Our first appointment is at 2:15. Hopefully the doctors here have seen all of this before and can help figure out a plan of action. I will try to update this sometime later tonight so everyone knows what we learned.
from Robin
Tomorrow morning we are off to Dana-Farber to hopefully get a plan to fight this cancer. We have had three doctors with different opinions and all of them are very happy we are going to Boston and anxiously await what we are told there. Apparently I am full of surprises, each doctor has been surprised so far with each scan. It is a little unsettling so I am hoping that the doctors we see tomorrow will not be surprised and will have a plan of attack. Dana-Farber is doing their own pathology and will review all the scans I have already done so they will have a full picture. I have more hope today and look forward to meeting these specialists.
Your support, love and prayers are so helpful. This is a whirlwind for us. Luckily we are moving the diagnostic part of the process along as quickly as we can. It is exhausting and busy but our goal is to start fixing this problem very soon.
Love,
Robin
Robin
Monday, March 11, 2013
PET Scan Results
There was NO obvious evidence of cancer outside the breasts!
But of course there were a couple of other findings that could not be explained...probably not cancer but unknown.
Robin is very much relieved and would love to start celebrating but it's hard with the unanswered questions.
Why can't this just be a normal case? I guess because we all know that Robin is not normal!
Thank you all so much for the love and support and prayers.
But of course there were a couple of other findings that could not be explained...probably not cancer but unknown.
Robin is very much relieved and would love to start celebrating but it's hard with the unanswered questions.
Why can't this just be a normal case? I guess because we all know that Robin is not normal!
Thank you all so much for the love and support and prayers.
Sunday, March 10, 2013
The Big Test
Robin has the PET scan tomorrow at 1:15 to see if cancer is anywhere outside the breast. We are asking for your positive thoughts and prayers in a major way for good news. Robin is extremely nervous about getting these results. We hopefully will have results late in the day tomorrow and will let everyone know as soon as possible.
We can't thank you enough.
We can't thank you enough.
Friday, March 8, 2013
The End of a Very Long Week
We had the bone scan this morning. There is no evidence of cancer in her bones. It seems that all of the positive energy and love and prayers have resulted in some good news for us!
This afternoon we met with Dr. Kara Kort, breast surgeon at Upstate. We have yet another twist to the case. She does not believe the MRI that shows the tumor at 7 cm. She thinks it has to be smaller based on her exam, which would be more good news. She completely agrees that Dana-Farber is the best place to go for another opinion.
We are somewhat more optimistic about this whole issue after today. However, we are still concerned that there is no consensus on what we are dealing with exactly. The next step is the PET scan that she will have on Monday. Our hope is that the PET scan is also clear.
Robin is still very nervous but finally able to be in a much better place right now.
This afternoon we met with Dr. Kara Kort, breast surgeon at Upstate. We have yet another twist to the case. She does not believe the MRI that shows the tumor at 7 cm. She thinks it has to be smaller based on her exam, which would be more good news. She completely agrees that Dana-Farber is the best place to go for another opinion.
We are somewhat more optimistic about this whole issue after today. However, we are still concerned that there is no consensus on what we are dealing with exactly. The next step is the PET scan that she will have on Monday. Our hope is that the PET scan is also clear.
Robin is still very nervous but finally able to be in a much better place right now.
Thursday, March 7, 2013
The MRI
Wednesday really sucked. Hopefully we get no more bad news.
Robin had a MRI in the morning and the results really altered the course we thought we were on. Instead of six very small tumors, it now seems like there is one large tumor instead. The approximate size is 7.4 cm x 3 cm x 4 cm. The good news was that there was no evidence of lymph node involvment.
Later in the afternoon, we had our first visit with Dr. Jeff Kirshner, a medical oncologist of Hematology/Oncology of CNY in Syracuse. He started considering the use of neoadjuvant therapy, which would be using chemotherapy first to shrink the tumor and slow any progression with the mastectomy happening later. This would be different than the traditional route of surgery followed by chemotherapy, know as adjuvant therapy. The reason is so that she doesn't have to wait for surgery recovery before starting chemotherapy. During our visit he picked up the phone to call one of his colleagues at the Dana-Farber Cancer Institute in Boston. After a few minutes of discussion, he hung up and told us that this is where we had to go. Originally, we thought he could refer us to Memorial Sloan Kettering in NYC. However, he says that this group in Boston are the world's leading experts on breast cancer in young women and if this were his wife or daughter, that's where they would go. He said this to us very kindly and very confidently.
We then went down for an ultrasound specifically to look at axillary lymph nodes (armpit). This also showed no evidence of enlarged lymph nodes. Another piece of good news and it agrees with the MRI, but neither test is great at finding lymph node involvement.
This week we are probably getting a bone scan and next week a PET scan to look for cancer in other parts of her body. We need to find out that there is cancer no where else.
Tuesday we travel to Dana-Farber to meet with a surgical oncologist and a medical oncologist that Dr. Kirshner recommended. Tuesday will be another very long day.
Of course, any of this may change depending on what we find out in Boston.
All of this is very scary for us and we appreciate all of your thoughts and prayers.
Robin had a MRI in the morning and the results really altered the course we thought we were on. Instead of six very small tumors, it now seems like there is one large tumor instead. The approximate size is 7.4 cm x 3 cm x 4 cm. The good news was that there was no evidence of lymph node involvment.
Later in the afternoon, we had our first visit with Dr. Jeff Kirshner, a medical oncologist of Hematology/Oncology of CNY in Syracuse. He started considering the use of neoadjuvant therapy, which would be using chemotherapy first to shrink the tumor and slow any progression with the mastectomy happening later. This would be different than the traditional route of surgery followed by chemotherapy, know as adjuvant therapy. The reason is so that she doesn't have to wait for surgery recovery before starting chemotherapy. During our visit he picked up the phone to call one of his colleagues at the Dana-Farber Cancer Institute in Boston. After a few minutes of discussion, he hung up and told us that this is where we had to go. Originally, we thought he could refer us to Memorial Sloan Kettering in NYC. However, he says that this group in Boston are the world's leading experts on breast cancer in young women and if this were his wife or daughter, that's where they would go. He said this to us very kindly and very confidently.
We then went down for an ultrasound specifically to look at axillary lymph nodes (armpit). This also showed no evidence of enlarged lymph nodes. Another piece of good news and it agrees with the MRI, but neither test is great at finding lymph node involvement.
This week we are probably getting a bone scan and next week a PET scan to look for cancer in other parts of her body. We need to find out that there is cancer no where else.
Tuesday we travel to Dana-Farber to meet with a surgical oncologist and a medical oncologist that Dr. Kirshner recommended. Tuesday will be another very long day.
Of course, any of this may change depending on what we find out in Boston.
All of this is very scary for us and we appreciate all of your thoughts and prayers.
Wednesday, March 6, 2013
The Support
I realized that so far I have been giving out just a lot of factual information. Now I have to mention the support. We are so fortunate to have the most amazing family and friends that anyone could possibly have. The outpouring of love that everyone is giving us unbelievable. Robin has more friends than anyone I know and wow, do they really take care of her. It really humbles us to have all of you guys in our corner. Robin has been trying very hard to return every phone call, every text, every email over the last few days from all of you guys. Please be patient with her and know that she is following up the best she can. All of this is very good for her mental health. It will help keep her strong. Robin thrives on her social interactions (in case anyone did not know this about her already).
We have received help in so many different ways already:
Friends that have been down this road before and know just what to do and say...
Friends that use their personal connections to get Robin the referrals she needs...
Friends that we can rely on to help us with our kids, anytime...
Friends that can just be with Robin or call to spend their time and listen...
Everyone asks what they can do. One of the best things is to send Robin your love and positivity through a phone call, text, email. She cherishes each one, just please understand that she can't always reply.
We have received help in so many different ways already:
Friends that have been down this road before and know just what to do and say...
Friends that use their personal connections to get Robin the referrals she needs...
Friends that we can rely on to help us with our kids, anytime...
Friends that can just be with Robin or call to spend their time and listen...
Everyone asks what they can do. One of the best things is to send Robin your love and positivity through a phone call, text, email. She cherishes each one, just please understand that she can't always reply.
Tuesday, March 5, 2013
The Pathology Results
This afternoon we received the full pathology results from yesterday's biopsy. See below for the details for anyone who is interested. Robin has hormone receptor positive breast cancer. This means that all three of the six tumors that were sampled are responsive to hormones. This is good news since this type of breast cancer has a better prognosis and more treatment options.
Tomorrow will be a busy day for us. We have a early morning MRI, then a consultation with the surgeon, Dr. William Schu, followed by a consultation with a medical oncologist, Dr. Jeff Kirshner. Both of these guys are highly recommended doctors from here in Syracuse. Our plan is to also meet with another surgeon from Syracuse, Dr. Kara Kort, on Friday hopefully. And then early next week we plan to visit Memorial Sloan Kettering Cancer Center in NYC for a second opinion on everything, unless we do not have time to wait. Everyone involved seems very concerned and we are moving this process along quickly.
tumor A: invasive ductal carcinoma; Grade I; ER/PR +; HER2 equivocal
tumor B: invasive and in situ ductal carcinoma; Grade II; ER/PR +; HER2 equivocal
tumor C: invasive carcinoma with mucinous features; Grade II, ER/PR +; HER2 negative
Tomorrow will be a busy day for us. We have a early morning MRI, then a consultation with the surgeon, Dr. William Schu, followed by a consultation with a medical oncologist, Dr. Jeff Kirshner. Both of these guys are highly recommended doctors from here in Syracuse. Our plan is to also meet with another surgeon from Syracuse, Dr. Kara Kort, on Friday hopefully. And then early next week we plan to visit Memorial Sloan Kettering Cancer Center in NYC for a second opinion on everything, unless we do not have time to wait. Everyone involved seems very concerned and we are moving this process along quickly.
tumor A: invasive ductal carcinoma; Grade I; ER/PR +; HER2 equivocal
tumor B: invasive and in situ ductal carcinoma; Grade II; ER/PR +; HER2 equivocal
tumor C: invasive carcinoma with mucinous features; Grade II, ER/PR +; HER2 negative
Monday, March 4, 2013
The Biopsy
During this biopsy, the radiologist found two additional tumors (a total of six). After taking the samples, the he walked them over to pathology and was back in 20 minutes with a confirmation of malignancy. It was what we expected, but at this point, it was now confirmed. The full pathology results would be back by Tuesday afternoon. Robin did great even though she was very nervous.
The Crouse Breast Health Center staff has been amazing throughout the last few days with us. Laura, the nurse "Navigator" there is exceptional. She is able to get us anything we need (the radiologist on the phone, test results, scheduling initial consultations). They do a great job of making the best of a bad situation.
The Crouse Breast Health Center staff has been amazing throughout the last few days with us. Laura, the nurse "Navigator" there is exceptional. She is able to get us anything we need (the radiologist on the phone, test results, scheduling initial consultations). They do a great job of making the best of a bad situation.
Sunday, March 3, 2013
The Background Story
Robin found a tiny lump about 10 months ago that she brought to the attention of her OB/GYN. She was sent to have an ultrasound of the area. At that time there was no evidence of a tumor and she was told it should not be a concern. Fast forward to last Thurday, February 28, when her OB/GYN felt the same lump in the same place and decided to send Robin for a mammogram at the Crouse Breast Health Center. The recommended age of a screening mammogram has recently been pushed back to 40 from 35. But given the fact that Robin just turned 35 and still had this tiny lump, she had her screening now. In addition to the one lump, the radiologist discovered three more tumors. We were all shocked by this, including the radiologist and OB/GYN. We were told that this was very likely cancer. She was scheduled for biopsy on Monday morning.
Subscribe to:
Posts (Atom)