Robin and her sisters out for dinner
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.
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