Check out this awesome video from Casey Eischen, BS, CSCS, CPT, CES, Health/Fitness Expert and Nutrition Coach, providing levels 1 & 2 of a great exercise program for women who have undergone a prophylactic bilateral mastectomy. More to come!
2/1: Check out a more recent post about exercise and nutrition: Foobie Fitness
Today’s “Thoughts from FORCE”
Reports are everywhere in the media about which celebrities underwent prophylactic mastectomy, the difficulty of their decision, and why these women made the choice. These media reports can be helpful to our community as they raise awareness of hereditary cancer risk and risk-management and remove the stigma of mastectomy. However, given the media focus on mastectomy, it would be easy to assume that surgery is the only option for high-risk women, when in fact, there are several options available to women who are at increased risk for breast cancer. When the media focuses solely on surgical risk-management, they may inadvertently send a message that this the only way to manage increased risk for breast cancer. Some women may avoid seeking information about their risk for fear that their only recourse will be surgery.
Risk is a spectrum. We know how to identify individuals in the highest risk category for breast…
View original post 718 more words
The countdown to my PBM has hit single digits! Less than a week away.
I have done/gathered almost every single thing on my checklist with the exception of the recliner. I’m borrowing one from a friend, because I don’t want to buy it just for the occasion and he has six.
DON’Ts
DOs
I’m anxious and scared, but very excited! Still feel that this is the right decision for me and that I am doing the right thing. Can’t wait to be on the other side.
All that’s left to do now is to get through the items on my Preparing for surgery list, think positive, and avoid getting sick! It just got real. It’s the final countdown.
Went to see the plastic surgeon for the last pre-op appointment. We discussed a few last details:
Some ladies are told not to shave, as it may increase chance of infection. Is shaving OK before the surgery? Yes, it’s fine.Added 1/19: Check out this awesome video from Casey Eischen, BS, CSCS, CPT, CES, Health/Fitness Expert and Nutrition Coach, providing levels 1 & 2 of a great exercise program for women who have undergone a prophylactic bilateral mastectomy. More to come!
Happy New Year/Happy Birthday FORCE
FORCE – Facing Our Risk of Cancer Empowered just celebrated its 14th Birthday! FacingOurRisk.org is an amazing site that I have spent many hours reading through. There is a message board, local group finder, lots and lots of articles and other resources, a photo gallery, info about studies and clinical trial, and so much more. If you haven’t yet visited FacingOurRisk.org, check it out!
I subscribe to the daily video from Dr. Greger (NutritionFacts.org), who is a nutrition expert. This week he posted a few videos related to breast cancer.
Studies suggest that eating 5 plain white button mushrooms per day may be sufficient to suppress breast tumor growth! Consuming soy and green tea also provides protection against breast cancer (contrary to some thoughts on how soy/isoflavones effect hormonally-sensitive cancers – see related articles below). Don’t forget collards and carrots. Watch these short videos for more info.
Many articles and videos available from NutritionFacts.org as well as multiple other sources support the fact that a plant based, whole foods diet (read: vegan) is not only good insofar as prevention, but could also be curative. This applies not just to cancer.
If you haven’t yet come across and watched Forks Over Knives, I highly recommend that you take the time out of your day to do so. It is a feature film that explores the foods we eat and what effect they have on our health.
“FORKS OVER KNIVES examines the profound claim that most, if not all, of the degenerative diseases that afflict us can be controlled, or even reversed, by rejecting our present menu of animal-based and processed foods.”
Related articles
Do you have a BRCA mutation? Are you at high risk? Have you been diagnosed with metastatic breast cancer?
Read FORCE’s blog post about clinical trials: Clinical Trials for Hereditary Cancer: Where the Rubber Meets the Road. Find a list of current studies on FORCE’s Featured Studies page. If you are eligible, consider enrolling in a study.
The nipples … I decided to keep them.
I met with Dr. K to talk about a few things I wanted to revisit before we sealed the deal. One of them being: whether or not my mastectomy will be nipple-sparing (see Nipples, pecs, bras, OH MY!). Some of the things we talked about:
How much breast tissue (if any) will be left behind? A small disk of breast tissue remains under the nipple to prevent inversion.
So will I have permanent headlights? This is a possibility. A few of the ladies I’ve spoken to have expressed that this is true for them after a nipple-sparing procedure. As you can imagine, having constantly-erect nipples can make things awkward, so definitely something I hope I don’t have to deal with. However, in discussing with my PS, I learned that as with other possible unsatisfactory results, it can be addressed in a few different ways. Worst case scenario: another procedure to remove the nipples and areolae.I’m confident that Dr. K is technically capable of performing this type of procedure and will do a great job. I am aware of the potential complications (not all listed here) – we’ll cross that bridge if we get to it.
Whew, that was the last thing to mull over, last detail to plan, last thing on my list that’s up to me (well, this list). Now the breast surgeon’s office confirms the insurance pre-authorization and I sign the consent forms. One pre-op appointment left with my plastic surgeon.
Related articles:
BRCA1 and BRCA2 are human genes that belong to a class of genes known as tumor suppressors. Mutation of these genes has been linked to hereditary breast and ovarian cancer. – National Cancer Insitute
A woman’s risk of developing breast and/or ovarian cancer is greatly increased if she inherits a deleterious (harmful) BRCA1 or BRCA2 mutation. – National Cancer Insitute
Having a BRCA gene mutation is uncommon. Inherited BRCA gene mutations are responsible for about 5 percent of breast cancers and about 10 to 15 percent of ovarian cancers. – Mayo Clynic
My mom, who was diagnosed with ovarian cancer in June ’12, just got the results of her genetic tests. The news is good, in that there were no mutations detected, however the test looked for only three mutations/variants on the BRCA1 gene (300T/G, 4153delA, and 5382insC). Only three out of hundreds of different types of mutations that have been identified! And the test only checked the BRCA1 gene. I’m inclined to chalk this up to the fact that she’s in Europe and maybe genetic testing isn’t as common practice there as it is in the US, but nonetheless I am dumbfounded. She has submitted another blood sample with a request to run a more thorough analysis.
This made me take a closer look at my own negative BRACAnalysis test results. The tests done were: BRCA1 sequencing (5-site rearrangement panel) and BRCA2 sequencing. The narrative explains: “there are other, uncommon genetic abnormalities in BRCA1 and BRCA2 that this test will not detect. This result, however, rules out the majority of abnormalities believed to be responsible for hereditary susceptibility to breast and ovarian cancer.”
So … what now? As far as further testing (BRACAnalysis Rearrangement Test – BART), I’m not sure that it is necessary. Per Myriad: “there is, on average, a less than 1% chance that BART will identify a mutation in a patient who has already had a negative result from Comprehensive BRACAnalysis.” I’m going to wait and see what my mom’s results are. In any case, this doesn’t change my decision to move forward with the prophylactic bilateral mastectomy in January, but creeps back another variable thought to have already been checked off the list.
Side note: In this blog, I’m only addressing my choice to have a prophylactic bilateral mastectomy to reduce my risk of breast cancer. I am conscious of our family’s history with ovarian cancer. That is another topic for another day. At this time, I have decided to keep a close eye and wait until I hit menopause to seriously consider an oophorectomy.
Update 10/16: Mom’s second genetic test results, which also checked for PTEN mutations, were negative. I gave blood for BART anyway and my results were also negative.
Saying NOPE to Breast Cancer 