I have tried to write about things in the sequence they mostly happened. For the time
frame between my surgery and starting my treatments I gonna jump around a bit. There were a lot of things going on. Various doctors to meet, treatments to determine, deciding where I wanted to have my treatments, follow up with the surgeon. I was glad I was able to be out of work on short term disability during all of this.
One of the first things I remember (besides the “bouncing boob” camping trip) is finding out about the Breast Cancer Coalition of Rochester (BCCR). I learned about the BCCR from my dear friend Jody. She waged a one woman research campaign about breast cancer after I was diagnosed. She worked in a field where she met a lot of different people and apparently questioned everyone and anyone who might have any information on breast cancer. She talked to survivors, family and friends of survivors, people in the medical field. You get the picture. If she found out something she thought would be helpful she would pass it along. Jody called me one day and told me she met a woman who was a breast cancer survivor and that she had highly recommended the BCCR. She said they were located in Rochester and provided various types of support and information for/about breast cancer. She then told me they actually offer a type of class called “Breast Cancer 101”. A class about breast cancer, now that was intriguing. I looked them up, got an address and drove up to Rochester to check them out. I spoke to the receptionist and asked about the “Breast Cancer 101” class. She advised I would need to make an appointment. She asked me some questions about my cancer and told me it’s more of a one on one meeting, not a class. She got me scheduled for later in the week. I wasn’t sure what to expect but figured anything new I could learn would be beneficial. When I went for my appointment I met with Holly. We reviewed what type of cancer it was, what stage it was, where it was and that I’d already had a lumpectomy done. We talked about the tests that were done and which ones we were still waiting for results from. We went over what the treatments may be and what they would involve. She told me about the different methods of radiation that were now available and how some side effects (short and long term) would vary according to the method used. We talked briefly about chemo since that was still a possibility. She talked about lymphedema. What the symptoms are, how it might be triggered, how to try to prevent it (I got a small brochure on it from the surgeon’s office, nothing else). We also talked about where I was going for treatments and if I had any doctors yet. I gave her the names of the doctors I had appointments with. She knew of my oncologist and said he was well known and had a good reputation (that’s good to hear). She was not familiar with my radiologist. She told me of other cancer treatment facilities in our general area and that I can sort of “interview” others before making a commitment. It was very informative. The BCCR was a wealth of knowledge on the very latest treatments as well as types of support and “after care” for breast cancer. It was a very relaxed conversation (as relaxed as a conversation about your own cancer could be). Holly told me about the various support groups they offered, activities geared towards enhancing survivors lives (yoga, meditation, writing, Tai Chi), monthly informational seminars, a program that pairs you with another survivor of a similar breast cancer who can offer you support and they even a lymphedema support group. Everything they offer is free of charge to all participants. They also have a large library of books you can borrow about pretty much everything breast cancer. Even though it’s an hour drive from home, I decided I was going to come back for one of the support groups that meet for lunch on Fridays.
A note about The Breast Cancer Coalition of Rochester
It is a grass roots organization. They now also offer support to women who have/had gynecological cancer(s) as well. They are “not for profit” and rely on donations and volunteers (keep that in mind if you have some spare money or time you don’t know what to do with). They are strong advocates for all breast and gynecological cancer survivors as well as being a driving force for research, laws that affect that research and health/medical coverage. If you live anywhere in the vicinity of Rochester and are either diagnosed or know someone who is/was diagnosed I strongly suggest you call them. Even if you are a couple hours away, it is worth the drive. The support you feel just even walking in/talking to someone there is immediate. Most of the people there have either walked in your shoes or have someone close to them that has. They are now branching out to the surrounding areas of Rochester. The Southern Tier, Geneva, Canandaigua. The programs they offer are great, the monthly seminars informative and they have a newsletter as well. I have done several of their programs and they themselves are a type of support system since all the participants (and most times the facilitator) are survivors. There is also a national Breast Cancer Coalition. I have seen listings for coalitions in other states as well. I am including links to the Rochester and National Breast Cancer Coalitions (see below). They absolutely are worth checking out!
Link for Breast Cancer Coalition of Rochester here
Link For National Breast Cancer Coalition here