Strong Family History and Prophylactic Bilateral Mastectomy
I am 57 and considering getting a prophylactic bilateral mastectomy (PBMX) and am looking to see if anyone has any advice... My mother, grandmother and greatgrandmother, all on my mom's side, had BC. Recently, my sister was diagnosed with stage 3C BC. Even though she has been very diligent, they did not see or feel anything in her exams/tests. That's four generations with BC!
I do not have BC, but have had one needle biopsy years ago (doctor did not send it in for analysis) and have very lumpy, dense breasts. My sister was tested for BRCA1 and 2 and the tests came back negative. I recently went to a genetic counselor and oncologist and they did not recommend any additional genetic testing. My immediate plan is to get yearly mammograms and MRIs and I am currently taking Tamoxifin.
I have upcoming appointments with a general surgeon and a plastic surgeon to discuss what my options are if I decide to go the surgery route. My question is.....given my situation, is PBMX too drastic of a course of action considering that I don't have BC and I don't have a positive BRCA1 or 2 diagnosis?
The few close friends and family I have spoken to about this have been either very supportive or very negative with regard to a PBMX, which makes me think maybe I'm being overly aggressive. This is a huge decision and I really am leaning towards having the surgery so that I hopefully won't have to go through what my family has, and is, going through; I won't have to go through testing every six months and the anxiety that comes with it; and I will know that I have done everything possible to avoid getting BC. I remember my grandmother being bedridden and in pain for two years when the cancer had traveled to her bones. What a horrible way to die!
I would appreciate your feedback. Thanks!
Comments
-
Hi Gen4,
In case you haven't read these articles on BCO, I'm posting them here:
http://www.breastcancer.org/treatment/surgery/prop...
Thinking of you,
The Mods
-
Hi Gen4
I had PBMX. My sister was dx at age 28 and my mother is adopted. I have no other female blood relatives from which to draw a family history, although my sister tested BRCA negative. So for reasons related to my sister's dx, and to my own breast issues, I decided to go forward with the surgery. You are right - people seem to be either strongly in favor or strongly against it. In my personal circle, I had a lot of support. My family was completely on board with my decision, as were the friends that I shared the information with. For myself, I know I made the right decision and I have no regrets.
It's a big decision - the surgery is tough, the effects are life-changing. I had reconstruction and that's a process in itself. One that is still ongoing.
So to answer your question: No, I don't think PBMX is a drastic choice in your situation. You are doing the right things - assessing your risk and evaluating your options. Making an informed decision is hugely important, and it sounds like you are on your way to doing that.
I'm happy to try and answer any specific questions you may have. Best of luck to you.
-
Gen4 - First let me say I think you are a very, very, smart lady to take Tamoxifen. It really is a wonder drug. After my PBMX a 1.1 IDC was found in my EXTREMELY dense breasts. My BS said Tamoxifen would have kept that in check. I wish someone had mentioned it to me. I may have been able to avoid all this. However - I certainly don't think a PBMX is extreme in your case, but, as scary as your family history is, unless BC is on your mom's AND dad's side, and assuming it is a genetic issue, your risk is probably no greater than 50%. I know that sounds like a lot. It was for me. I always knew through all those years of screening if anything came up I would have my breasts removed preventively. ADH and ALH did come up.
The other very interesting thing I learned on these boards is that Tamoxifen can make your breasts less dense. I would find the best radiologist I could, look them in the eye, and ask how well your breasts image based on your breast density. i.e. Do they think they can see something in them?
Part of my decision tree was 1. Do I want to prevent it? or 2. Do I want to catch it early? There is a flaw in my logic in that there was no guarantee I would get BC. I think the thought of a BC diagnosis is especially terrifying when you've watched a loved one go through it.
SarahJane is so right, a PBMX is not easy, especially if you are considering reconstruction. It is doable. Two of the best days of my life were the two days after my mx. The worst day of my life was on day three when the doctor called to tell me they found a tumor in the final pathology.
It is such a personal decision. It sounds like you are getting excellent care and advice from your doctors.
I know where you are coming from. Private message me anytime if I can help.
-
Hi there!
I am sorry to hear about your sister's recent diagnosis.
This is a personal decision. Given your family history pattern, I certainly would not say you are overreacting by looking into surgical options. Nor are you under reacting if you decide it is not for you. Tamoxifen and/or screening are also very reasonable options and I agree with Lucy, it is great you are taking Tamoxifen!
Did the genetic counselor give you a risk assessment? If you are on Tamoxifen, the idea is you can kind of "halve" that risk.
I am 34, and the three generations of women before me (mother, maternal grandmother, two "maternal" great-grandmothers) have all had BC. My mother was diagnosed at 47/48 with Stage III ILC (19+ nodes) and is fortunately still around 8 years later after mx surgery, chemo, rads, and Tamoxifen/AIs...hoping for best. My maternal grandmother had it 2x, and died of metastasis at 59; 11-12 years after her first diagnosis.My maternal great-grandmother (grandmother's mother) died on the operating room table, riddled with cancer. My other great-grandmother had BC in her early 60's, had a unilateral radical mx, and lived for 20 more years or so until dying of colon cancer. Women before them died young, but have no idea of what.
I am the oldest in my generation, by quite a few years, and kind of feel like the guinea pig (or, rather, the canary in the coal mine) when it comes to my sister and I to see if it will strike me too. I do have a few female maternal cousins, all several years younger, but no maternal aunts or great-aunts (heck, I don't even have any paternal female cousins, aunts, or great-aunts...it is a very male-dominated family overall!). While I do qualify for high risk screening, I also do not trust in "catching it early" based on my family's experience with "sneaky" cancer missed on imaging, and the aggressiveness of their cancers.
Anyway, I am also BRCA-...and no known mutation in my family, so am what they call an uninformed negative. I have also had additional testing done and other than some polymorphisms that *may* increase risk, nothing determinative found. They believe there is SOMETHING going on in my family, be it polygenic/multifactorial or an undiscovered mutation.
My risk assessment (from three different genetics experts) is at about 40% lifetime risk. That may be high for some, low for others. For me it is high based on my family pattern of each woman directly in line before me having had BC (usually early onset, and in the direct maternal line very aggressive)....and while BRCA-mutations are definitely high risk mutations, I have seen BRCA+ women with less cancer in their own families than mine so for me not having a known mutation does not mean a lot at this point. So, for me it comes down to my own personal comfort level with risk. I have a PBMX with implant reconstruction scheduled for May 13 (though the date may change!). I have had the fortune to find a LOT of support amongst my husband, my family (even my mother who is worried for me has been very supportive), friends, even my close coworkers. I have only encountered a couple "negatives" but they are both people who definitely do not understand cancer very well and would prefer I tried eating more mushrooms or something....I don't take it to heart! I too find the idea of high risk screening for the next few decades stressful (as my BS said, basically it would continue until I was too old or sickly to operate on anyway...that could be a long time if I am lucky!) and I want to take what steps I can to hopefully avoid treatment for
breast cancer...a PBMX of course does not take away all risk, but I feel
better about choosing surgery now and never knowing if it made a
difference, than I do about not choosing it and having what ifs if I do
get cancer, and need to make decisions for treatment based on that. And
if I have PBMX and get breast cancer anyway? I do believe I will at
least know I did what I could and not be left with what ifs.Do I think PBMX is drastic? Yes. It is a "drastic" surgery. I am very anxious about it, about reconstruction, and recovery. But I also feel VERY comfortable with my actual decision to have the surgery. My anxiety is more around the potential risks and complications, not the decision itself. I feel very peaceful about the decision itself.
You might also want to check out FORCE (Facing Our Risk Empowered) if you have not already. There are some great forums there, and information overall for women (and men) with hereditary risk. Their next conference is also in June...I have not been to one but I have heard they are incredibly informative and even fun.
Please also feel free to PM me if you like.
-
Divecat - you know how eye color can be dominant or recessive?? Have you seen anything re: BC genes, even BRCA? Hmmm . . . I am obviously not a scientist!
-
Hi Gen4,
DiveCat has some wise words
I am also BRCA- but clearly something going on in the family. Mom with premenopausal BC, diagnosed in her mid 40s, died in her early 50s. Paternal aunt died of "stomach cancer" but we think metastasis from BC. But, my mom's two sisters are fine, and have lived into their 80s, as did both my grandmothers.
So...I was high risk and early screening, and scheduled for my first MRI when my doc found the lump in a physical exam. Mammograms showed nothing. I'm 41. I had a double MX, one prophylactic.
However, I would think carefully before doing it. A few things to consider -- you're 57, past the age of the usual aggressive family cancer onset. How old were/are your affected relatives? Did they develop BC pre or post menopause?
As others have said, tamoxifen will lower your risk significantly.
If I could wind back the clock to age 35, I wouldn't have done a prophy MX, even given what I know now. I would've pushed for earlier MRIs and would've asked to take tamoxifen.
But...that being said, lessening fear is not an inconsequential outcome.
I would push to get your BRCA test before you make any more decisions, and see if tamoxifen makes you less dense, which makes mammograms easier to read and that in and of itself lessens risk.
Good luck
-
One more point, you could be positive for BRCA even if your sis is negative.(I'm assuming you don't know your mom's status). I read somewhere that women from BRCA + families have an increased risk even if they are themselves negative. A
-
Lucy - I am not a scientist either. All I know about any genetics comes from Wikipedia, SNPedia, and so on!
My understanding with BRCA is that the cancer risk is considered dominant, even though you only usually inherit one mutated copy from one parent. This is because those with a mutation are more likely to get a second mutation on their good copy (from some other event) than those without a BRCA mutation...so then the cancer is expressed dominantly.
I don't know a lot about the other low-to-moderate penetrance mutations/variants though...but again neither do many of the scientists it seems. My genetics people just said "it is possible that there is a combination of variants in your DNA that combined increases risk" but research into that whole polygenic thing is still pretty underdeveloped. I have had testing done that shows I have a handful of heterogeneous and homogeneous variants (SNPs) that have been linked to increased risk (in both or either heterogeneous and homogeneous forms), but in many cases no one really knows "how" they work (or don't work) exactly - or in some cases even which gene they may affect - so I don't know either! I guess interesting information for researchers, but rather useless information for me! But...the idea is actually very similar to that for eye colour...I took this from Wikipedia's eye colour page!:
Eye color is an inherited trait influenced by more than one gene.[12][13]
These genes are sought using associations to small changes in the genes
themselves and in neighboring genes. These changes are known as single-nucleotide polymorphisms
or SNPs. The actual number of genes that contribute to eye color is
currently unknown, but there are a few likely candidates. A study in Rotterdam (2009) found that it was possible to predict eye color with more than 90% accuracy for brown and blue using just six SNPs.[14]
There is evidence that as many as 16 different genes could be
responsible for eye color in humans; however, the main two genes
associated with eye color variation are OCA2 and HERC2, and both are localized in Chromosome 15.[8]The gene OCA2 (OMIM: 203200), when in a variant form, causes the pink eye color and hypopigmentation common in human albinism. (The name of the gene is derived from the disorder it causes, oculocutaneous albinism type II.) Different SNPs within OCA2 are strongly associated with blue and green eyes as well as variations in freckling, mole counts, hair and skin tone. The polymorphisms may be in an OCA2 regulatory sequence, where they may influence the expression of the gene product, which in turn affects pigmentation.[11] A specific mutation within the HERC2 gene, a gene that regulates OCA2 expression, is partly responsible for blue eyes.[15] Other genes implicated in eye color variation are: SLC24A4[16] and TYR.[16]
Blue eyes with a brown spot, green eyes, and gray eyes are caused by
an entirely different part of the genome. As Eiberg said: "The SNP
rs12913832 [of the Herc2 gene] is found to be associated with the
brown and blue eye color, but this single DNA variation cannot explain
all the brown eye color variation from dark brown over hazel to blue
eyes with brown spots."So, similarly, my genetics counselor has explained to me that breast cancer risk in some BRCA- families may also be influenced by more than one gene (i.e. polygenic) to create "risk" (similar to how many variations may combine to make brown eyes). But, a single variation is not likely to explain increased risk in all families or what that risk is exactly (like how they can't explain why brown eyes can vary from dark brown over hazel to blue eyes with brown spots). Also...in some families including BRCA+ families with low rates of BC, there may be protective genes (and SNPs at play). It is a pretty fascinating area of research in my view, but again, I am not a scientist so it is not my area, ha ha.
-
There are also epigenetic changes that alter risk, and biologists are only beginning to understand these changes and how they affect phenotype.
Eye color is a "simple" polygenic trait that we know quite a bit about-- risk factors for BC are much more complicated, and even with a BRCA1+ the lifetime risk for BC in not 100%...
-
Very interesting!
Gen4 - Sorry to hijack your thread! I do agree with Lojo re: age of onset. I had my BRCA test at 51 and my GC thought it unlikely that I was BRCA+ since it generally presents at an earlier age. My mom had BC at 27 and it was very aggressive. Mine was much later and not that aggressive, so perhaps no genetic link?? FYI - I also had another genetic test called BART, it is an offshoot of the BRCA. I was neg for that also.
DC - Thanks so much for your research. Are you sure you're not a scientist???
-
Hi ladies. I am currently recovering from a pbmx with reconstruction on Feb 17. I am 37 years old with a strong family history of breast cancer and had had numerous b9 biopsies. After the seventh biopsy in 3 years, I'd had enough! I rejected the idea if frequent screenings (mammograms and MRI's on a six month alternating schedule)! I hated getting MRI 's and waiting for the results. Currently I am 9 days post op and am very thrilled and relieved to have done the surgery! It was freeing just to get the surgery scheduled. I am so excited to be out of the dread associated with my breasts!! Recovery so far is manageable. It is a big surgery...and is not for everyone...but it was for me!!!:)
-
Thank you everyone for your responses!
A couple of notes for some questions:
- My mother and sister were both diagnosed with their cancers, postmenopausal, in their early 60's. From what I can tell, that is about the same time for my grandmother and great-grandmother.
- My sister had genetic testing for BRCA1 & 2 using "BART" and they were both negative. The genetic counselor I saw indicated that since my sister came back BRCA negative and she has breast cancer, it would be extremely likely that I would test negative too. My mom has not been tested. So, that combined with the fact that my family members were diagnosed later in life than most BRCA positive individuals, they did not believe that it was beneficial to have me tested. I guess I would feel a bit better about my decision if I were BRCA positive, but then I look at my family history and say, "The heck with the BRCA test.....look at all the cancer!"
I hope your surgery and recovery goes very well, DiveCat; and I wish you a speedy recovery, Fourtangs!
Again, thank you all. It's nice to know I'm not alone.
Oh! One other question. Has anyone had the "Direct to Implant" reconstruction?
-
It took me a while to make the decision, but I'm scheduled to have my mastectomy in April....had 3 biopsies, a million mammograms and 2 MRIs...I'm DONE :-) I'm hoping to have the direct to implant...my PS does it and has good results....I'm pretty top heavy--I want to be smaller (but not too small) and the direct to implant has some size limitations.... so we're going to talk again before I make the final decision. I'd love to just have this done quickly and w/ one procedure (Direct to implant does often require some minor revision surgery though)...
The genetic counselor I talked with said that there are only a few "identifed" BRCA mutations...people w/ strong family history should be treated w/ the same high risk as those w/ an identified mutation. I'm sure there's a BRCA 3 and 4 that hasn't been identified yet. Good luck with whatever you decide! It is a very hard choice but in the end, you'll do what's right for YOU. Be well.
-
Gen4...
I believe there is a thread on here in Breast Reconstruction called "Direct to Implant/One Step with Alloderm" or something (most doing one step do use Alloderm/Strattice or another tissue matrix, and if you go to FORCE there are a few woman there who have had direct to implant as well in prophylactic surgeries (it seems very common with preventative surgeries as there is no need to worry about radiation and so forth). I know of a few woman who have had it, some with great outcomes with great recovery after, some had to go back for one or more surgical revisions or even to get expanders put in after all. If you are are a candidate for it, it can be a great option though as it may reduce amount of surgery and of course skips expansion process which there are rarely good things said about (there are different things that can preclude you from being a good candidate...very large breasts if you are doing nipple sparing, more apparent ptosis, wanting to go bigger than you are, etc). The important thing is to find someone very experienced in it, can assess you to determine if you are a good candidate, and who has the skill to perform the surgery.
I am currently scheduled for expanders. My surgeon (who I am scheduled with so far) said he could do one-step on me as I am a good candidate, but he would prefer to do expanders (mainly as he has more opportunity to refine outcome to fit in line with the goals I discussed were important to me). I chose to do expanders after those discussions AND because quite frankly he was much more experienced with expanders anyway which to me was important. So, I am going that route. I am meeting a new surgeon next week though and I might see what he has to say...if he is more experienced and feels confident in being able to do it, I might go that way.
Oh, I was going to add...BRCA2 often can often actually present as later onset (meaning post-menopausal) breast cancer compared to BRCA1, but that your sister was an affected individual but negative may indeed mean there is no BRCA mutation at play (unless SHE was sporadic). But yeah, I can understand not wanting to pursue it. I know for me I am happy I DID test because it did get some doors opened up for me even as an uninformed negative, but at the same time it meant having a lot of uncertainty to figure out what to do with that information initially. At first it just made me more desperate for an answer through further testing, but then I realized, there just might not be one right now and I need to do what feels right for me based on what I DO (and DON'T) know at this point in time.
ETA: Here is that thread on one-step with Alloderm
http://community.breastcancer.org/topic_post?forum_id=44&id=736507&page=1
-
Hi, everyone.
I hope it's ok for me to jump in on the discussion here.
First off, Gen4, I do not think that PBMX is too drastic for someone in your situation. Even if you were to test negative, you still have a strong family history, and it looks that something nefarious is wreaking havoc in the breast tissue of your female family members. Whether it's BRCA or a polygenic perfect storm, there is nothing wrong with reducing your risk in the way in which you feel most comfortable. You stated that your "sister had genetic testing for BRCA1 & 2 using "BART" and they were both negative." I just wanted to clarify and ask if she had the full sequencing done via BRACAnalysis with BART as a supplement? I know it is the standard with Myriad to use BART to look deeper for large gene rearrangements after the full BRCA testing; however, with the loss of the patent and newer labs now offering testing, not to mention the fact that many doctors who are not genetic counselors order tests by simply checking a box on a form, I wanted to make sure that she wasn't basing her negative result on a BART-only test. I see that DiveCat addressed the later-age of onset in BRCA2 mutation carriers. That's important to keep in mind because many people assume that even though there's family history, if it's primarily post-menopausal, then there can't be a BRCA mutation at work--I wasn't saying that you feel this way, just that I've seen this stated quite frequently and I'm glad DiveCat brought it up. While it is indeed true that BRCA mutations are quite rare--I spoke with a geneticist at Myriad just last Friday and she said that about 1 in 400 of the American population (approximately 0.25% have a BRCA mutation), they are a harsh reality for many of us. Someone has to fall on the unlikely side of a small statistic.
Farmerlucy: I know your question was directed to DiveCat and she addressed this, and did a great job with it, but I just wanted to add to the discussion. BRCA mutations are inherited in an autosomal dominant manner, which just means that it only takes inheriting one mutation from one parent to have a mutation yourself. Other genetic diseases that are autosomal recessive have mutations in which a child must inherit a defective copy from both parents in order to carry the specified mutation. I totally agree with DiveCat that eye color is influenced by multiple genes (polygenic)--that is very true. I also agree that breast cancer can be polygenic in some families, and individuals, and be the result of the "perfect storm" I mentioned above. I understand the comparison you were making about eye colors as an example because I had the exact same question when I was first diagnosed with my BRCA mutation and drew upon the eye color concept to contextualize BRCA inheritance. However, from my understanding, the concepts are quite different. We inherit one BRCA allele from the mother, and one BRCA allele from the father. If we inherit a mutated copy, the wild-type (non-mutated copy) performs the job of repairing errors in the DNA. If we lose function of that wild-type copy due to things like chemicals, environment, hormones, or even just a random error during cell division that results in an error being replicated, then a tumor can form. Breast cancer can result from the interaction of BRCA, p53, etc. that have specific functions to keep us safe, but under various circumstances, they can draw from each other in a mutated state and allow tumor formation. In those instances, breast cancer--even BRCA mutation-related breast cancer is polygenic because it involves multiple genes working in concert. But, as for the passing-on of BRCA mutations being dominant or recessive in the way in which we think of those things (such as with eye color), it's quite different. With eye color, because it is determined by multiple genes, you have recessive and dominant features and multiple alleles instead of just two. Remember those old Medelian genetic charts in elementary school that we would do to show all the possibilities of eye color, blood type, and things like whether peas were round or wrinkled? We'd wind up with that little box chart with multiple possibilities because we were working with multiple alleles and had to account for various combinations. With BRCA, we are working with only 2--so that's why you either inherit it or you don't and it is not something that you can pass on without having, so there's no skipping of generations. Of course, as we all know, not every BRCA mutation carrier will develop cancer. My 20 year-old daughter inherited my mutation and will have a PBMX with recon on Wednesday of next week. As for why some with mutations develop cancer and others do not (within the same family, and having the same mutation so that we aren't comparing separate mutations with different rates of penetrance), I think it can be due to not having been exposed to the same outside influences that causes the wild-type copy to stop functioning. There's also research that points to the idea that perhaps it is the wild-type that determines risk. So, this would mean that say you are a BRCA mutation carrier and thus rely on your "good copy" or wild-type to keep you cancer-free. If research is correct, then certain variants that occur within the wild-type copy would be what modifies risk for that individual, so it would help explain how mutation carriers from the same family and exposed to similar influences can have vastly different risk levels. It's an interesting theory and I'd like to see where it goes.
Zeeba: I'm with you that strong family history should trump negative test result and I also agree that there's likely something like BRCA3 etc waiting to be discovered. We do know there are other less common genetic mutations that influence breast cancer risk besides BRCA, so I'd strongly encourage anyone with concern to speak with a genetic counselor to discuss whether other tests are right for them. I did want to say that there are more than a few identified BRCA mutations. For BRCA1, there are over 1,000 and BRCA2 has quite a lot as well. The research shows a great deal, though many are quite rare even amongst mutation carriers. I specifically asked the geneticist at Myriad this question last week and her response was, "Wow, a lot. Some are very uncommon, but we've identified many...over a thousand in BRCA1 alone."
DiveCat: I don't post a lot on FORCE, but I read it very regularly and I always enjoy seeing your posts both here and there. I appreciate and respect your knowledge of this mutation.
I wish everyone the best with their concerns, risk-level, screenings, and surgeries. I'm sorry again for butting in to the discussion.
Edited for clarity.
-
LRD - Wow! You are amazing! What a wealth of knowledge! Thank you so much. You ladies teach me so much.
Oh how I look forward to the day neither we, or our daughters have to resort to removing our breasts to prevent this beast.
-
Farmerlucy: Thanks! I'm sorry for rambling and posting such a long post. I was hoping perhaps it would be useful to someone in the future who came upon this thread after searching.
I so look forward to that day as well. It pains me to no end that my daughter has to remove her breast tissue to hopefully escape this disease. She's known since I was diagnosed just under 3 years ago, that if a mutation were at work, she wanted to have the PBMX. We support her in that decision because I was blindsided by my diagnosis at 34; we also know that our specific mutation is one that carries a great deal of risk, both in other carriers and within our family itself. But, oh how I wish she didn't have this with which to contend.
-
Ladies,
It is so inspiring to read all of these posts. I feel like so many of us have such similar stories. My Prophylactic Bilateral Mastectomy with Tissue Expander Reconstruction is next week. I am worried that they will find something, but who isn't in this position? I will deal with whatever comes down the pike! I have lost so many wonderful women to this disease. I am determined to use the tools and information out there to make the best choice for me. While most of the people in my life have been incredibly supportive, it amazes me how a few have thought of this surgery as no big deal or even worse a " boob job". Thanks to all of you for putting your info out there and understanding.
-
Praying for a completely uneventful surgery and recovery for your precious DD lintrollerderby!
-
Great post LRD, thank you!
Best wishes to your daughter. It is wonderful that she has such an informed and supportive mother!
-
Hi, LRD!
To answer your question about the type of testing my sister had:.....
According to the report, she had "BRCA1 sequencing comprehensive rearrangement and BRCA2 sequencing comprehensive rearrangement," and the results for both were listed as "no mutation detected." The report goes on to say that, "Analysis consists of sequencing of all translated exons and immediately adjacent intronic regions of the BRCA1 and BRCA2 genes and a comprehensive rearrangement test of both BRCA1 and BRCA2 by quantitative PCR analysis (BRACAnalysis Rearrangement Test, BART) The classification and interpretation of all variants identified in this assay reflects the current state of scientific understanding at the time this report was issued.".....No deleterious mutation was found in BRCA1 or BRCA2 in this individual by sequencing and quantitative PCR analysis." I'm assuming this is full sequencing?
So sorry that your daughter has to go through surgery.....and so young. I too hope for a smooth surgery and speedy recovery for her.
I have tried to explain my situation to my 27-year-old daughter and what our strong family history could mean for her too. She is not supportive of my decision for a PBMX and doesn't seem to grasp the importance of what our family history could mean for her too. I'm hoping that, with time, she will understand.
-
Hi farmerlucy, DiveCat, and Gen4,
Thanks so much for the well wishes and support for my daughter's upcoming surgery. I really appreciate it! Thanks for the kind words, too! Sorry I didn't reply sooner; I tried to stay busy this weekend preparing both mentally and physically for the impending surgery. She has her pre-op appointment tomorrow morning.
Gen4,
Thanks for posting the wording of the report. Yes, that means she had the complete sequencing for BRCA1 and 2 followed by the large rearrangement test (BART). I'm so glad she's negative and I hope you will be, too. I'm very sorry that your daughter is not supportive of your decision for PBMX and doesn't seem to appreciate the significance of your family history. Perhaps having her accompany you to a genetic counseling appointment would help? If you see a medical oncologist for high-risk surveillance, maybe speak with them ahead of time and then ask her to go with you to an appointment so that she would hear the risk assessment from a neutral third-party medical professional? I'm sorry she is not supportive of your risk reduction measures; it's hard enough being high-risk without the added scrutiny of those close to us not being onboard with the decisions we make.
-
Hi Gen4. Sorry to have not replied sooner. About your question "Direct to Implant"....I was able to go straight to an implant at the time of my PBMX and reconstruction. Somehow the PS was able to get a "c" cup (I don't remember the exact number of mL) implant in. I was/am happy to have an implant in as I have heard about how unpleasant TE can be but I also didn't want to have the frequent trips to PS and another procedure. However, getting a direct implant was not really up to me. I went into the surgery not knowing if I would have enough good skin to close over the implant. Just another reason to be thankful for breastfeeding 4 kids and letting myself become engorged with each of them!
I'm only 2 weeks out and currently my implants feel very large and heavy! 
I have to agree with all the genetic testing. My mother and her mother both had, and passed away from, breast cancer. My father's mother had breast cancer as well as 4 of her sisters. Both my mom and dad had BRCA testing and my mother had another test days prior to her passing. I think it was BART....it was a saliva test. All results were negative but as it was said earlier, all the cancer (and losses to bc) totally speak more than any genetic test!
lintrollerderby, best wishes to your daughter! I will be thinking of her! Gen4 keep us posted on your decision! Thanks everyone for your support! It's great to know we are not alone!
-
Hi all!
I am feeling better about everything. I have an appointment with a surgeon next week and a plastic surgeon the following week. My gut tells me that I am making the right decision for me and unless the surgeons tell me otherwise, I plan to move forward.
In case you haven't seen it, I stumbled across a series of seven youtube videos posted by a website called myselftogetheragain.org. The series documents a young BRCA negative woman having a PDMX and takes you through step by step all the surgeries and recoveries she had and how she felt at each step. It's very well done and definitely worth watching, especially for someone like me. The first video is called "Breast Reconstruction after Mastectomy Info video 1, M:TA."
Thanks, again, everyone. I'll keep you posted!
-
Just an update.....all went well with both the surgeon and plastic surgeon. My PDMX and direct-to-implant reconstruction surgery date is May 28 and I can't wait.
As a side note, I also do genealogy and just discovered that my great great grandmother died from liver cancer (makes me wonder if her's might have started as breast cancer based upon family line). If she did have breast cancer, that would make five generations of breast cancer (all direct descendants on my mother's side)!
I am certain that I am making the right decision for me. I just have this thought in the back of my mind that I keep trying to push away...... "What if I already have cancer and they find it when they do the surgery?" Trying not to be negative, but I it keeps creeping up.
-
hi Gen4. I am having exact same surgery and went through all the same turmoil trying to come to the right decision. Once I did it felt like the biggest weight had been lifted. I am dreading surgery, but after 6 biopsies and a lumpectomy in just over one year I decided enough was enough for myself and family. I have strong family history and my genetic testing also came back negative. I have adh and alh, horribly dense and cystic breasts and now some serious scar tissue. Since my last biopsy in January I already have a new, large lump that would send me down the biopsy path again. I can't make it 6 months before I have biopsies. I am thankful everyday that I have the opportunity to take care of this early. I also, worry about what they could find during surgery, but find comfort in knowing that if they do, it's still earlier than waiting another 6 months and maybe it wouldn't be seen still. I don't know if you saw that there is a May surgery thread. I would love to keep in touch with you over there as we prepare.
-
Hi, Weistrong.
Thanks for your reply. Yes, I will join the "May group." Thanks.
Sorry about your situation. I agree. Now that I have made the decision to have the surgery, it is a lot less stressful.
It's funny, I feel guilty that because my sister was diagnosed with cancer, I am now able to have the surgery to avoid what she is going through. In talking with her, she feels bad because her bc diagnoses has triggered my decision to have surgery. To me, it's a blessing that her diagnosis has shown a light on what my chances of getting bc are and I now have the opportunity to try to avoid getting it. I guess it's kind of like survivors' guilt?
-
Hi,
I just went through my PSBMX on April 9, and I'm not going to lie, it was a big surgery, but it was totally doable and I am recovering really really well. I too had a ton of biopsies, starting from my very first mammogram and a genetic risk factor of 66%, plus LCIS and Multi focal ADH. For me, after 6 years of stress I was done. The decision once made made me feel calm and in control. The worst part was the waiting for the actual surgery. Now that I'm on the other side, and the pathology has all come back negative I am on my way to recovery and reconstruction which is not too bad and once the drains came out, it's not such a big deal anymore. I am relieved and grateful I didn't have to go through the horrific chemo and was able to save my nipples so I have no regrets and a lot of peace.
Good luck to all of you,
Nina
-
Ninany - I am so happy to hear you are doing well! It is such a great feeling to get the clean pathology report and know you can move on! I hope your recovery continues to go smooth! My surgery was in Feb and I'm doing great. My back sometimes gets a little tired but nothing significant. Now that summer is here, I'm loving wearing cute shirts and not having to worry about a bra! I'm really starting to love the new "girls"!
Best Wishes...
Anna
-
I have a huge family history of breast cancer (including younger sister and mother) and many other types of cancer that have been traced back to the person who has brought the mutated gene into the family. I am 52 years old and recently had a mammogram, ultrasound and MRI of my breast all on the hunt for a palpable lump well (mass is what the oncologist is calling it). This mass has not been found on any film (had and aunt with the same type of lump), however on the MRI a few clusters of hot spots showed up. The Radiologist (with a resident- this is a teaching hospital) who studied the films suggested that I get a biopsy via ultrasound and if the spots they found on the MRI are not visible via ultrasound then biopsy is to be done via MRI. So all appointments are set up via the oncologist and I arrived for the first set of needle biopsies (the palpable mass had to be done elsewhere because they will not do them in the woman breast center- yet they will do visible ones - go figure). I am told to we are going to get a new set of Mammograms (second set with in a month in a half). I question why is it taking so long and when are we going to get the biopsy done as I have to be to the other part of the hospital for the other one. The radiologist finally agrees to speak with me and she informs me she is not going to do the biopsy she feels that the mammograms do not warrant any needle biopsies so she refuses to do them and also the MRI ones that were also ordered. She feels that the mammograms are better studies since this is my first MRI that she has to go by she does not want to put any needles in me and she is comfortable with her decision. These two doctors share and office, I questioned the logic and asked that she speak with the oncologist. I was and am furious. I inform the radiologist that I do not like to be jerked around and I am not some idiot due to my family history I am well versed when it comes to breast cancer. She is standing by her response.
The results from the other biopsies that were taken will be in tomorrow and I see the oncologist on the 12 because she is on vacation. My gut says screw them all and take my films else where but I do trust the oncologist.
My gut is telling me there is something wrong - I have already had 3 other biopsies on the same breast over the years. This time things feel different.
Wondering if any of you have an opinion.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team