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Topic: PBMX only for FEA?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jul 20, 2018 08:08PM

Stherye wrote:

Hi all, I'm a 42 years old married with two beutiful twins ( boy and girl, 6 years old) not family history of bc, I am slim, non smoker.

Last february I had my first mamography, they saw something suspicious, birads 4a, finally it was a papilloma but with mild FEA (flat ephitelial atypia) It was removed and I am under surveillance 6 months. I am being treated in MD Anderson in Madrid, Spain.

I couldn't find many info regarding FEA, but I asked to Hopkins and they told me my risk of getting bc is 30%, so it is more or less like ADH.

Y went again to Anderson because I had pain in my armpit and it is swollen, so i had another ultrasound. Thank God my armpit is not worrisome but they have found another nodule and more things. The doctor suggested me having a MRI due to my previous papilloma with atypia. He thinks is another beningn papilloma. I will have the results next tuesday.

But i'm thinking seriously about having a PBMX, i am stremely scared and i have been reading this forum and it seems that when atypia is found, it is a matter of time it becomes dcis or idc in the future. Of course I know it doesnt happen always, but very often, I am afraid.

Am I crazy for thinking about PMBX only for FEA?

When I read here that some of you have had pbmx for ADH, ALH, DCIS or LCIS, and I see in their firms that they stopped the problem there and no more bc related issues after that for years, I really think, how lucky they were they could stop the problem.

Of course I am really scared also with the pbmx, side effects, quality of life...

I would really appreciate any opinions or comments. Sorry for my English, it is not my language.

Intraductal Papilloma with FEA - 2018 Surgery 10/17/2018 Prophylactic mastectomy: Left, Right
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Aug 4, 2018 05:14PM Stherye wrote:

Finally I have decided to have the PBMX next 25th of September, I am scared but I have decided it. I got the results of my MRI, again papilloma categorized as birads4.

They told me it is benign and I could have it removed after holidays. But I dont want another core needle vacuume biopsy as I would have the pmbx done at the end of September.

Intraductal Papilloma with FEA - 2018 Surgery 10/17/2018 Prophylactic mastectomy: Left, Right
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Aug 4, 2018 08:32PM farmerlucy wrote:

I’m glad you have made your decision. In my opinion the screening itself becomes almost as worrisome as a diagnosis (almost). For me the mastectomy was the absolute right thing to do. I have never regretted it for a millisecond. Was it extreme? Perhaps. We each have our level of comfort. Good luck with your surgery. Mine was totally uneventful and I had no issues with healing.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Aug 9, 2018 08:43AM gnoz8 wrote:

I’m in a similar situation. They found ALH during my April MRI. I’m BRCA neg, but have a strong family history. I feel like it’s just a matter of time before BC catches up to me. I’m scheduled for PBMX on August 29, and I’m scared. I’ve been really good with the fear up til now, but my anxiety has increased as the date approaches. The last week has been kinda bad. Now I’m obsessing about nipple necrosis and PMPS.....just scared of all the unknowns. I agree with farmerlucy, the screenings become so very worrisome, too. It just seems as if there is no good choice. At least no easy one. I’m confident about having the PBMX, but am full of anxiety about the potential complications. Argh! They say the wait is the hardest part.

Surgery 8/29/2018 Lymph node removal: Sentinel; Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 9, 2018 09:28AM Stherye wrote:

Farmerlucy, many thanks for sharing your story. It is wonderful you chose pbmx, thanks to that you caught your idc on time. You were extremely brave. You are an inspiration for many of us in similar situations.

Gnoz8, I can understand you very well. I have decided the pbmx as well, it will be next 25th of September. I am now on holidays trying not to think a lot in that day, but I know me, I will be very nervous as the date will be closer.

My gyn thinks i am absolutely crazy about even think in pbmx because of FEA. But in less than four months I have had two papillomas, the first one with fea, the second one i dont know because i will wait to September to have the pmbx.

I dont want to scare anybody and I know my risks are 30% in twenty years. But i have been reading in different forums and I have read some women with papillomas got bc after three years or more. I also remember one of them who got bc in the contralateral stage IV one year later after excised one papilloma. I know I have 70% odds not having bc but it scares me too much. I also know bpmx reduces risks from 90 to 95%. Others say even to 99%. What I know is that I preffer being as agressive as I can now and not regretting in the future. I think I have been very lucky to have a benign desease and I have many options other dont have, what is really sad. Tears come to my eyes when I read so many stories here about women who were under surveillance but mamos, us and mris missed their bc and the posibility to treat them early.

My gyn told me that, you could be under surveillance and if it evolves to dcis or whatever, we can treat you very soon. I told her, I have read many cases that mammos, us and mris missed bc and she told me it is true. I am sorry, but I will not play with random, this is my life and I would do anything I can, even though if I need to pay the pmbx.

I have a doctor very friend of mine. He absolutely supports my decision. He has had cancer and he is a survivor. He told me it is not a very complicated surgeon, not more than many others. He says I will have a beautiful breast after surgeon, probably better than I have know ( I have a beatiful breast right now :) and dont worry too much.


Intraductal Papilloma with FEA - 2018 Surgery 10/17/2018 Prophylactic mastectomy: Left, Right
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Aug 9, 2018 01:14PM Aussie-Cat wrote:

Stherye, I can understand your decision to have preventive mastectomies. I also did that on 19th June because of my family history. It is terrible to have that fear of getting cancer hanging over you so it makes sense if you can do something to improve your chances of not getting it.

Diagnosed with nerve pain (post mastectomy pain syndrome) July 2018 Surgery 6/18/2018 Prophylactic mastectomy: Left, Right
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Aug 9, 2018 04:01PM Stherye wrote:

Dear Aussie-cat, what kind of pbmx did you have, if you dont mind me asking? By the way, I really think you chose the best option. At least is the one that offers the best risk reduction. At the same time I think it is not for everybody, it is only for those who think that peace of mind is more important or cannot live with the ansiety of 6 months surveillance.

I will have inmediate reconstruction with silicone implants, nipple skin sparing.

I am quite sad because my mother doesnt support me on this. She told me there is no one single case of any kind of cancer in my family and this is true. But I told her genetic bc is only 10% of the total. She is telling me, Angelina Jolie, the only case she knows with pbmx, had genetics and nearly 80 % risk.

The first time I had my ultrasounds and two doctors came to see the screen, I was really nervous. One of them told me, we dont want to scare you but you have something suspicious. It doesnt look extremely bad, it is not invasive, but you have a nodule with irregular contour. You should have a biopsy. I had the worst two weeks of my life. I didnt know anything about bc, anything at all. I just thought I will never have breast issues as I dont have bc in my family. I was quite naive...

I remember going to Anderson with my husband for the results, I couldnt almost breath until the told me, congrats no cancer. But I will never forget that feeling, and since then, it is as almost I had it, and I considered bc women as my friends. Nobody knows how breast deseases are until you have them. I also remembered being really scared, not sleeping, having nightmares...

They didnt tell me my papilloma had atypia until it was removed, so thanks to that I thought bening papilloma that needs to be removed and I was calmer until the final report, papilloma with mild focal flat ephitelial atypia.

But four months later, another us, this time a male doctor, he told me, you have another one and because you had atypia, this time you should have a mri. I remember telling him, no please, not again... :(

He was very kind to me, He told me, it looks like exactly as the previous papilloma you had. Final report of mri, papilloma in the same breast.

I dont want to live like this for the rest ofmy life. Before knowing the mri result, again I was almost into tears until they told me, congrats, no cancer again. And I just wonder, how many times am i going to be lucky?

Intraductal Papilloma with FEA - 2018 Surgery 10/17/2018 Prophylactic mastectomy: Left, Right
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Sep 3, 2018 10:14AM - edited Sep 3, 2018 01:42PM by gnoz8

stherye- just wanted to check in with you. I had my surgery last Wednesday. It is going much better than I imagined. Waiting truly is the hardest part. I feel much stronger and far less upset than I did while waiting:). Wanted you to know it will be okay, you're not crazy for doing this, you're strong enough to do this, and no one needs to agree with your choice because no one lives your life but you.:) I don't regret mydecision for a second. I feel so relieved to be free of the worry!!

Surgery 8/29/2018 Lymph node removal: Sentinel; Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 3, 2018 04:31PM Stherye wrote:

Dear Gnoz8, I am so happy for you and reading everything was ok for you and you feel stronger and what it is more important, you feel free of the worry.

We have similar thoughts and also we are same age more or less.

The other day I dreamed I had the pmbx and the result was awful, thank God it was only a dream. Other times I am worried if I will not feel my breast (numbness) or if I will feel my chest cold, as I have read through these forums and I have to confess I am worried and sad.

But on the other hand I would be even saddest if I had bc. It is like thinking..I dont know how or why I have ended here, but the truth is that I am here and this is what I am going to do.

I will have pbmx with inmediate silicone implants, I think you had diep¿?

Do you have any suggestions post surgery?

It seems silly but I have got Netflix, because I know I will be many hours here at home for recovery.

Hugs

Intraductal Papilloma with FEA - 2018 Surgery 10/17/2018 Prophylactic mastectomy: Left, Right
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Sep 3, 2018 07:13PM gnoz8 wrote:

I agree, we do have similar situations, thoughts, and are about the same age.

I have emotional moments, but they are short-lived. I don’t try to fight whatever emotion surfaces right now. I assume I will feel all over the place at times. I’m sure it will get better with time.

I did have direct to implants, not DIEP. I don’t have enough extra material to make the size breasts I had originally. I also didn’t want other surgery sites. If I want to switch out my implants for analogous tissue surgery one day, I can. I have full feeling on the upper portion of my chest and on the inner sections of both breasts. I am numb along the middle and outer sides of both breasts. I have some numbness near my drain sites and under one arm, but I had sentinel node removed on that side (the ALH side- ALH was close to nodes, docs wanted to make sure nothing was hiding anywhere). It’s weird, not going to lie. I’m holding out hope that I may regain some additional sensation over time. I remind myself that even if I don’t, I am lucky to have been able to keep my skin and nipples, to not have chemo and radiation, the worry of cancer recurrence after treatment.....all the things I have seen my mother and close friends endure. I didn’t emerge unhurt, just with as little as hurt as possible.

It is what it is. I would much rather have never had to deal with any of this, to never have to sacrifice anything, to not to have had to make a choice.....but I did. I feel like I made the right decision though. It’s just the hand that was dealt. I feel like I played the hell out of it:)

Suggestions: I’m still navigating the aftercare, but I feel like a good mindset is key. Netflix is key! Yes! I’ve been watching a TON of Netflix. Good move!! Even though I had prepec implants, the alloderm is stitched down, so movement of my pec muscle pulls at those stitches a little. Taking off the tops of pill bottles was uncomfortable, so now I keep them loose (I don’t have children so no danger). I would get your prescriptions filled before surgery, move items on bottom and top shelves to easily reachable heights, get some button up/zip up tops (make dressing easier). The hospital gave me an apron for my drains. I wear it all the time except to shower. It’s made everything easier


Surgery 8/29/2018 Lymph node removal: Sentinel; Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 5, 2018 04:43PM Stherye wrote:

Hi Gnoz8,

It is so good to read your opinions and thoughts, because I understands you perfectly.

I also think you have made the right decision and I also think you are lucky in the sense that you have dealt with this at time, as you said, you dont need chemo or radiation and no more worries because you dont have cancer, you have alh and you have been very brave.

We must consider us lucky because we have options. I am so sad when I read here many women didnt have many options because they didnt caught it on time, it is so unfair. Of course we all have different choices and treatments are better day after day.

You have had the surgery which is considered the one with the least pain, am I correct? I will have inmediate recon with silicone implants under my pec muscle. My doctor told me it was the better way for me, also with alloderm. I think it hurts more because the cut an put the implants below..ufff. I will keep also my skin and nipples.

I dont know why, but I am getting worried because of the final report, as I have another papilloma in the same area than the previous one, mri says it is birads 4. The same birads as the first one, the one with atypia. They told me to remove it with bav, vacume excisision, but I decided not to do it and just get the pmbx. And now i am wondering...if it this one has something else?? Dcis or invasive?

Yesterday I went to my first gyn, the one that asked for my first mamo and us, and thanks to her I knew what is going on. I told her about my decision and she said...If I were in your shoes.., I would do the same. I owe her everything, I owe her that I have caught this maybe on time.

Intraductal Papilloma with FEA - 2018 Surgery 10/17/2018 Prophylactic mastectomy: Left, Right
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Sep 5, 2018 05:37PM gnoz8 wrote:

yes- we are super lucky!!!!! I was in the same situation. They wanted to remove the ALH, but since I wanted to do the pbmx, we didn’t take the ALH out....just did it all at the same surgery. I stressed badly about the results, wondering if there was something else lurking in there. My final pathology report was clear.:) Try not to worry. I know it’s hard.

Sounds like you are doing the dual plane surgery...implant is covered by muscle on top with an Alloderm sling on the bottom. I’ve see really great results with that method. It’s kind of the hybrid between what I did and completely under the muscle.

Surgery 8/29/2018 Lymph node removal: Sentinel; Prophylactic mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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