How many biopsies before the big decision...

Rshep9101

Hello Everyone,

Today I had my 5th biopsy in the last 8.5 years. 2 core needles, 1 stereo tactic, and 2 excisional surgeries. I have had countless mammograms, ultrasounds, and several mri's. This journey began for me at the age of 30 with the diagnosis of clusters of microcalcifications and ALH(atypical Lobular Hyperplasia). I am now 39. The fear and anxiety this all causes me is so difficult. I know I am lucky to have had benign results thus far but this process is tormenting for myself, my kids, and my husband. How many biopsies did you go through before deciding to do PBM? If not is there a threshold or breaking point other than cancer? I can't get a handle on what I am feeling right now. This newest tumor is only 6 months after removing a 3cm Harmatoma so it feels so fresh and I am emotionally wiped.

Ingerp

Have you had genetic testing? I had ALH 10 years ago, and then the DCIS three years ago and IDC last year. I <stupidly> was a little late getting my regular mammo before the DCIS dx, so the area was quite large. You should have some mental peace knowing that you're doing everything you can in terms of monitoring. How often do you get looked at? Once a year? Could you bump that up to every six months? I believe if the genetic testing shows any abnormalities that can increase your testing frequency.

el7277

In my opinion...I would get the mx. I was in similar boat and it got the best of me. After too may call backs from mamos and a breast biopsy I hit my breaking point. It started with the nurses who did my genetic counseling... it was hours and they were intrusive imo and that was followed by a uterine biopsy not long after I underwent due to what were normal premenopausal symptoms. Some times it is just too much. I am post bmx now because of a stage 1 cancer which thankfully I felt myself. Had I been more current with 6 mo mammography or mri it would have been caught sooner. The constant fears, callbacks and procedures take so much and the professionals involved are not always aware of their actions and decisions snowballing on us.

Ja9831

I couldn’t agree more. I’ve made the decision as well my surgery is scheduled for June 28th. The thought of the screenings and biopsies forever didn’t sit well with me. The first couple were torture. I knew I couldn’t do it until something could possibly be found. I feel any risk is high enough. Best wishes to all!!

Rshep9101

Yes, I have had genetic testing. I was negative my sister is positive. My lifetime risk is 47%. I get screened twice a year. MRI and then 3Dmammo plus a visit to the surgeon. Often there are ultrasounds, extra mammograms and biopsies mixed in There too. I have a son who is almost 14 and a daughter who is almost 4. My son in particular has been on this ride with us since he was 5. I think it is hard on him and my husband. My husband lost his dad to colon cancer 12 years ago and his mom had BC in 98. So, we know cancer very well. I am scared about the recovery associated with PBM and the loss of sensation. Anyone get any sensation back after surgery?

pegasus68

I am struggling with this very decision right now. Our stories sound similar, so I feel for you! 6 biopsies in the last 5 years (7 total - 2 excision, 3 US, 1 MRI, 1 stereotactic mammo). My history: Diagnosed LCIS 5 yrs ago, strong family history, Tyrer Cuzick lifetime risk 65-76%, depending on who ran the numbers (but TC overestimates for LCIS, so…). No mutations on mutli-gene panel. I alternate 3D mammo/MRI every six months. Due to my very 'active' and dense breasts, I need to have extra images taken almost every time. (Last mammo, the technologist whom I've gotten to know all too well joked that I would be there a while since it would take so long to review all of my prior images, then when they experienced a technical issue we joked that trying to open all my images must have crashed the system… ) Even when it doesn't end in biopsy I sometimes get 'we'll take more images of this when you're back in 6 months anyway.' Unfortunately, no longer content to just sprout fibroadenomas and cysts of all types and sizes, my boobs have come up with more subtle ways to mess with imaging. My last MRI showed 2cm linear/ductal enhancement the docs seemed to think was DCIS ("This is a very specific finding. I'm sorry.") - but turned out to be stromal fibrosis and duct issues instead. My last mammo showed two new clusters of suspicious microcalcifications. The biopsy was altogether unpleasant for a number of reasons (worst one so far!) – but the 26 cores they took all came back as benign proliferative fibrocystic stuff. I'm 50 so I keep hoping the boobs will 'settle down' with menopause but no luck yet.

A couple of years ago, my then-onc (different hospital and insurance) actually mentioned that given my level of risk and all the crazy callbacks and biopsies I might be a candidate for PBMX. I was not ready to think seriously about it at the time. Now… maybe not such a bad idea (but now with different high-risk doc and insurance – I get the feeling that it would be a tougher sell). But my ob/gyn last week also suggested it since I'd had 2 more biopsies since I had last seen him, so I feel less out of line with my thinking. I also know that my family and friends who desperately wanted to save their breast but didn't have the option due to size of cancer would totally not understand my desire to 'amputate' healthy breasts. But having my life interrupted every six months for a 'scare' that takes 3-6 weeks to resolve – this is a stressful way to live. And I'm REALLY tired of shelling out $2000-$5000 every year (after insurance) for the privilege of zapping my boobs with radiation several time a year, exposing my brain to gadolinium at least once a year, and having my boobs chipped away piece by piece. The thought of being able to avoid all of that is appealing (although I know PBMX has its own significant issues and possible complications – and there's no going back). If I get the courage I'll bring it up with my dr when I have my annual MRI+ 6month mammo/US followups this summer. For now I guess I'm in a holding pattern as I mull it over.

(Sorry for the long rant!)

DiagnosisDisruption

My last Herceptin chemo was December 26, 2018, had my first "after cancer" mammogram in February. I am supposed to get a high risk MRI six months after the mammogram. The oncologist asked me if I wanted to schedule it for summer. I asked how many times am I going to get false positives (of which I already have had two during the initial diagnosis stage). She said "pretty often." I told her I didn't want one. Ignorance it probably bliss, but I feel like I've served my time.

For what it's worth, the onc was perfectly okay with my response.

farmerlucy

17 years of high risk screening, two excisional biopsies, PBM, and I still didn’t outrun the beast.

farmerlucy

I have sensation in cleavage area only. I’m seven years out from exchange and the implants are getting tight and encapsulated. The initial surgery was not that bad, but the expanders under the pecs - YIKES!

Rshep9101

It definitely sounds like we are in similar situations. Rant away...I get it! Many others only see the benign result...expecting peace and joy. By the time I receive my results I am completely drained, exhausted, and a little anxious about the next go round. I am waiting on the results from my biopsy and yet I feel like even if the results are benign my mood may not change. Is that aweful? I have reached a stage where I am just really tired of being scanned, touched, squished, poked, injected, and cut open. I can not fathom continuing at this pace for another 30-40 years! Maybe they will calm down. Maybe Not. I am not squeamish, I have a high pain tolerance, and I have certainly been through it before but I was really struggling. I had to force myself to get out of the car to walk in for my biopsy yesterday. I am terrified of the PBMX but equally scared of this fight against getting cancer becoming the theme of my whole life. I don't know what I am going to do. I am eager to talk to my Dr and get her take once pathology is in.

Rshep9101

Pegasus68 It definitely sounds like we are in similar situations. Rant away...I get it! Many others only see the benign result...expecting peace and joy. By the time I receive my results I am completely drained, exhausted, and a little anxious about the next go round. I am waiting on the results from my biopsy and yet I feel like even if the results are benign my mood may not change. Is that aweful? I have reached a stage where I am just really tired of being scanned, touched, squished, poked, injected, and cut open. I can not fathom continuing at this pace for another 30-40 years! Maybe they will calm down. Maybe Not. I am not squeamish, I have a high pain tolerance, and I have certainly been through it before but I was really struggling. I had to force myself to get out of the car to walk in for my biopsy yesterday. I am terrified of the PBMX but equally scared of this fight against getting cancer becoming the theme of my whole life. I don't know what I am going to do. I am eager to talk to my Dr and get her take once pathology is in.

Diagnosisdisruption - my Dr was really conflicted about the mri because of the false positives but with my risk factors she felt like we had to be proactive. She seemed to feel like imaging advancements are moving towards of modalities for screening in the next 5 years. so the plan was that we would see what my breasts and science do...

Famerlucy I am so sorry to hear of your diagnosis despite have the PBMX. Isn't that really rare? Did you have implants or fat grafting?

Rshep9101

Pegasus68 It definitely sounds like we are in similar situations. Rant away...I get it! Many others only see the benign result...expecting peace and joy. By the time I receive my results I am completely drained, exhausted, and a little anxious about the next go round. I am waiting on the results from my biopsy and yet I feel like even if the results are benign my mood may not change. Is that aweful? I have reached a stage where I am just really tired of being scanned, touched, squished, poked, injected, and cut open. I can not fathom continuing at this pace for another 30-40 years! Maybe they will calm down. Maybe Not. I am not squeamish, I have a high pain tolerance, and I have certainly been through it before but I was really struggling. I had to force myself to get out of the car to walk in for my biopsy yesterday. I am terrified of the PBMX but equally scared of this fight against getting cancer becoming the theme of my whole life. I don't know what I am going to do. I am eager to talk to my Dr and get her take once pathology is in.

Diagnosisdisruption - my Dr was really conflicted about the mri because of the false positives but with my risk factors she felt like we had to be proactive. She seemed to feel like imaging advancements are moving towards of modalities for screening in the next 5 years. so the plan was that we would see what my breasts and science do...

Famerlucy I am so sorry to hear of your diagnosis despite have the PBMX. Isn't that really rare? Did you have implants or fat grafting? 17 years of high risk screening? Wow! How often were you screened? Did you have a ton of biopsies? What prompted your ultimate decision to do the PBMX?

Evie10

I also know how you are feeling. Last year I had 6 biopsies and about the same the year before and 3 the year before that. I break down every time. The stress got so much that I collapsed. I ended up in hospital as I took a panic attack.

A new surgeon has told me he thinks that a PBMX would be allowed (we have strict standards in Australia). I hate my breasts. I’m in pain constantly with the fibroadenomas. I cant take anymore screening - yearly mri, ultrasounds,mammograms and biopsies. I have such small breasts and they are causing such misery. I’ve s extremely dense and highly vascular breasts that even the MRI comes with uncertainty.

I’m terrified of the PBMX too.

My husband can’t take much more of the yearly breakdowns

Take care

Evie

farmerlucy

About 20% of dx get upgraded after surgical pathology. I have implants. I was screened every six months to every year with mammograms, ultrasound, thermogram. I had two MRIs and two excisional biopsies within two years of the PBM. The biopsies showed ALH/ADH. That with very early onset familial breast cancer (my mom had it at 27), and an estimated lifetime risk of 50%, and shelling out $5000 out of pocket yearly just for breast cancer screeningconvinced me to do the PBM.

MaryScout

Hello All,

Sorry for cross-posting. Not sure of the rules of the forum, so please delete if it's not okay to cross post.

================

I was diagnosed with ADH (and small amounts of ALH) about a month and a half ago. I guess because I've survived cancer before (cervical and melanoma), I pretty much knew right out of the gate that I didn't want to do the high-vigilance approach. I didn't want the multiple biopsies, the waiting, the anxiety, etc. They were also suggesting drugs (e.g., tamoxifen), and I didn't want to do that either. I travel a lot in my job and for pleasure, and a lot of that travel is out of the country. I really didn't want to change all that either.

So.... I got hard to work and scheduled a PBMX with diep flap at the Center for Restorative Breast in New Orleans. It's been one week and a day since I had it done, and we returned back home (in PA) yesterday. I can honestly say that this has been one of the best decisions of my life. If I wouldn't have done it, today would have been the day I would have gone in for my first excisional biopsy due to the ADH. Instead, I'm having a cup of coffee in my house, enjoying life, healing really well, and seeing this whole thing as a bad dream that's over.

I know what I did was super pro-active and what some might characterize as extreme. The one thing I really realize is that we are all different -- in our emotions, in our framing of this disease, in how we want to approach it, in how we heal, in what is important, etc. And every difference is one that I respect and appreciate and support. So this is my "difference," and it sounded like it might be relevant to the posts going on here. If you are thinking of PBMX with reconstruction, I cannot recommend the practice in NOLA highly enough. They are truly top-notch. I love my new foobs -- because it is a diep, they are my own tissue -- soft, warm, and permanent. They are numb, but some of the feeling is starting to return. I know it will never get to wherever it was previously, but that it ok. I would go this route again without question.

If you want to talk at all, please feel free to PM me. Would be happy to do it.

Yours,

Mary

Rshep9101

Mary, Thank you so much for taking the time to share this. I know that every person has a different body and a different experience. That said hearing yours was very helpful. Most of my family disagrees with the idea of PBMX (for me) including my sister who is BRCA positive. I started thinking about my lack of real support other than my very supportive husband and became overwhelmed. I am very independent and can't imagine needing help from people who really disagree with my choice for an extended period of time. Your experience seemed relatively smooth and without the weeks/months of dependency I had envisioned. I am still awaiting biopsy results....ugh. I am eager to talk to my Dr. I don't know if I am ready to make that decision, but with every scan, biopsy, and surgery...i find myself getting closer. I am screened so vilgilantly that my fear is not dying from cancer. Now, my fear is that my entire story, my life's theme is going to be centered around whether I have cancer. I am afraid of being slowly butchered over years of biopsies. I am also desperately afraid of losing the sensation in my breasts. What made you choose the NOLA center? I have seen that place mentioned on the boards before. Thanks again for you perspective.

MaryScout

Hi Rebekah,

I am sorry that you don't seem to have full family support for the possibility of PBMX. Glad that your husband is supportive!!! When I first came to my decision about it, I didn't really have full support either, but at least no one was truly hostile to the idea. I can remember the startled faces of people when I would say, "I think I'm opting for surgery -- you know -- the Angelina Jolie kind of approach." But I think that maybe their shock reflects that there is so much in the media about how breast cancer is really next-to-nothing. Everyone seems to have a story about an aunt or a friend-of-a-friend or some colleague who had breast cancer X years ago and who had a lump removed and is doing great. And listen, I am so delighted that strides are being made! Thank god that many women can, if they want, have a lumpectomy, monitor closely, and live fulfilling, healthy lives. But I think that we (and the media, too) want to tell stories that are beautiful and inspiring, and we don't want to put in the not-so-nice details of anxiety and biopsies and side-effects of drugs and waiting for the doctor's phone call. Those are the types of details that I needed to tell my friends/family who were doubting my decision. I just didn't want to live my life like that. Also, I spoke with several friends/acquaintances who had gone through cancer, and without fail, they told me that I should go for it. Rebekah, I know it's not for everyone, and so I don't want to come off as trying to persuade you -- I'm just sharing what was running through my mind when I made this really tough decision.

In terms of NOLA, they came to my attention through boards like this. Also, my husband is from New Orleans, all my in-laws are there, we were married there, etc. But honestly, it was through forums that they caught my eye. And the more I read about reconstruction, the more that I became convinced that DIEP was the way to go for me. I just liked the idea of my breasts being my own tissue, being warm to the touch, etc. If you call them, they will set you up with a patient educator phone call -- no commitment whatsoever. That was super helpful, too. I also considered PRMA in San Antonio, but I liked the fact that a surgical breast oncologist at NOLA did the mastectomy part, that everything was biopsied, etc. Then I had a niece of mine in NOLA who is a nurse do some checking around with her colleagues. Everyone raved about the place. Being on this side, I am so happy to have done this.

About the breast sensation, well, I'm not going to sugar coat that. I really don't have too much sensation. But I do have some tingling going on that suggests to me that some sensation is starting to return. But I don't think it will ever be like it was. Am I sad about that? Sure. Does that sadness make me regret this decision? Not at all.

I'm going to PM with my contact info should you want to talk. I sure helped me to talk with a lot of folks with many perspectives when I was thinking about this. I wish you all the best, and please know you have my full support and appreciation no matter which path you may choose to take!

Warmly,

mbo