PBMX for ALH or ADH?
Comments
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Dorenneanne,
It seems we had our surgery on the same day! I hope your recovery is going smoothly and hope you are progressing nicely! What type reconstruction did you have or have you had reconstruction yet? Welcome to this thread! I was thrilled when Valerie started it for I feel it is much needed! There really don't seem to be all that many of us but everyone here is quite supportive of everyone else no matter what decision they have made for themselves.
Again, Welcome and I hope you are feeling well and recovering!
Hugs
Sandy
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Hi Sandy: My recovery is going smoothly, how about you. I had TE put in. The PS would have done direct implants with skin sparing, but because I had a breast reduction in sept. he couldn't. What about you, are you having reconstruction? I hope you are feeling well.
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Doreenanne - I felt the same about worrying constantly. PBMX was the best decision for me - and I too am glad I did it - although it's not for everyone. Were you able to have nipple/skin sparing? I too had TEs, my exchange surgery was in October.
It's only been a week since surgery for Sandy and Doreenanne - hope you guys are starting to feel better - do you still have drains? I go to the PS today for my last appointmenta before I go to yearly. It will be a little sad not to see him anymore....
Hugs, Valerie
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Doreenanne,
I must just be having a monent of not being able to tell one date from another! My surgery was on March 18, not April 18 so I am 5 weeks post-op now. I am feeling quite well now but still have periods of some pretty severe soreness especially when I do more than I know I should. The "pain" has pretty much gone now and I am grateful for this! I think I was pretty fortunate for I didn't have pain which could not be controlled with pain meds.
When the drains are removed, Doreenanne, you will feel so very much better! I hope you are feeling better each day but please take it easy and give yourself time to heal!
I did not have TE's. I had one-step with AlloDerm and immediate implants. I was glad I was a candidate for this type surgery for many ladies are not good candidates for one reason or another. I think the reality is pretty simple: we all deal with whatever type surgery we can medically have and in the end, most types are successful!
Hugs to All,
Sandy
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valerie: How was the exhange surgery. i like you have TE
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Doreenanne - sorry it took me so long to get back to you. I really didn't mind having the TEs. The exchange surgery for me was not bad at all - I felt great after, but had to be careful about lifting my arms and lifting anything heavy for awhile. Also no exercising for about 4-6 weeks after. How are you doing? Hugs, Valerie
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Valerie: I'm doing ok, the TE are a little uncomfortable. My surgery was 4/18, today I started to feel a little more like myself, not as tired. The PS said I have to heal about 4 weeks before starting to do the fills.
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Hi Valerie - I am having PBMX w/ DIEP in a few weeks. I am nervous, but certain I am making the right decision. My insurance is covering it (probably they figured it will cost them less in the long run). ADH, have had many (10) biopsies, and have family history. All my imaging comes back highly suspicious, MRIs have been BIRADS 5, but when they do biopsies they've only found ADH, no cancer. My family and docs are very supportive. I'm sure there are people who will think I am nuts but they have never walked in my shoes. So here I go!
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Lightening,
I am 7 weeks post-op from my NS/PBMX and healing pretty well. Congratulations on your courage and decision! I have thought of many things since my surgery but I have not thought about having BC a single time!
You will be amazed about how much stress is instantly relieved from your life when the daily fear of having BC is no longer a part of your life. I thought about BC every single day. I'm sure you know all about this!
If you need to talk, feel free to send me a PM!
Hugs, Sandy
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Lightening - I think you are making the decision right for you - my insurance covered surgery also. I agree with Sandy - you will just feel so much better not thinking about having breast cancer! Let us know how it goes. Valerie
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Doreeanne,
So happy to hear you are feeling better and more like yourself again! The extreme tiredness does go away soon. You will continue to feel a bit better each day and soon, this will just be a memory. Eventually, I think it becomes a really good memory for it becomes the day you stopped worrying about BC!
Hugs
Sandy
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How is everyone doing? Hope all is well with everyone!!
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Hi Valerie, doing fine here thanks...hope you are doing well also!
Something I sometimes think about that I haven't really seen addressed is how great it is to not have all of those constant sensations I used to have in my breasts before my PBMX. People complain often about being 'numb'. I used to be so sore, constantly having a pain here, a weird feeling there--I am so happy to not feel all of those things I used to feel that worried me. Yet another reason why I am so glad I did what I did.
Hope you all have a great week!
Suzanne
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Hi Suzanne, Glad you are doing well - my breasts were never sore, but the numbness doesn't really bother me. So why did you have PBMX?
Hugs, Valerie
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Valerie,
I didn't want to take Tamoxifen. I didn't want to worry constantly. I didn't want to have high risk monitoring for the rest of my life. I didn't want constant doctors visits and I didn't want to be deformed by numerous biopsies. I guess I just needed peace of mind and this was the best way to get it. I would do it again in a minute.
Suzanne
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I had core needle biopsy last Sept. due to calc's which came back negative. Had follow up mammo in March which just showed calc's - nothing worrisome. With BS okay, had breast reduction in early May. Path showed ALH in both breasts. BS said same thing another member's dr. had said - ALH is like getting an abnormal pap!!! Suggested close monitoring with MRI in 3 months due to recent reduction. And then 6 mo mammo's after.
Paternal grandmother died of BC in her 40s; sister had ADH, lumpectomy and subsequently went on Tamoxifen - post menopausal 8 years ago. So I go to sister's dr who advises me to not go on Tamoxifen and wasn't even a proponent of having an MRI!!! She did say I could have genetic testing if I wanted but not sure now, b/c I know if I had the BRCA I would elect for double mast. but now I have my great new little ta-ta's and don't want to do that to them or go through what I'm going through with recovery again.
So confused right now. My breasts were very dense, large and lumpy and I definitely feel like self-exams will be more manageable. I wish I had known I had ALH before the reduction b/c I definitely would have found a dr. that would support mastectomy. Should I get another opinion esp. with regard to Tamoxifen?
Any thoughts/advice? ~Patrice
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Patrice,
I think the fact you are asking "Should I get another opinion?" answers your own question! I personally think anytime we feel the need to ask this question, the answer is always, "Yes!" Nothing can be lost by getting a second opinion and much could possibly be gained! Get that second opinion for your own peace of mind. Remember, getting another opinion does not require you to do what that doctor suggests. You may still do what you feel is right for you!
I think it is a very good idea to be proactive, get as much information as possible about your condition, and ask plenty of questions. This is your body and information is pure gold.
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Ok how is everyone?
Sandy - are you still healing well? Are you still happy with your decision to have surgery?
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I am ten weeks post-op today! Yes, I am still very happy with my choice to have had the PBMX for it now almost three months since I had to worry about developing breast cancer! I will require a routine clinical exam yearly, and an MRI every three years to rule out any problems with the implants but this is so much more managable than the number of tests and doctor visits I was having prior to surgery! I also think the stress of "waiting for results" being gone is a tremendous relief as well!
I think this is probably not the right choice for everyone for a variety of reasons, but it was certainly the right choice for me! I wish I had had it done years ago!
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Hi Sandy - Since it has been ten days since you posted I hope you are feeling better and better!! I agree PBMX was the right choice for me - just to have the stress and worry gone. My PS says I don't need an MRI to see if implants are leaking, he just wants to see me yearly? He says he will be able to tell if they are leaking - from what I've read it would be a really slow leak and you can't tell - I wonder how often the leak?
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I think leakage is really quite rare. I don't know the percentage but believe it to be very low. My BS and PS want me to have an MRI at one year and then one every three years to check about placement of implants as well as to check for possible leakage.
I don't really think it is that easy to tell if there is a leak without an MRI for it seems it would be difficult to know from just a clinical breast exam.
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Just checking up on everyone - hope you all are doing well!!
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Hi. Had my surgery last week. Ended up that they took some muscle tissue for the recon too and perhaps that is why I feel a little worse than I expected. I've had a lot of abdominal pain and drain issues but doctors are pleased with my progress. Although this was a PBMX because I had 10 biopsies and fam history, my path report found DCIS, ADH, and ALH. So I am SO glad I went through with this. It just would've been biopsy after biopsy....
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lightening good thing you went through with it with all they found in the path. You hear that so often happening.
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Lightening,
I am so happy you are doing well! It will take a bit of time to feel better but you will and it will be sooner than you expect.
With everything they found, it is certainly good you have had a MX so you will have far less to worry about in the future! I am happy for you. Recover soon
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lightening - hope you are continuing to feel better. If I were you I would be happy with the decision you made - you had alot of stuff going on in there!!
Hope everyone is well - I had nose surgery (deviated septum) last week so haven't been feeling the greatest - but I go today to get the splints/packing out - hopefully I can then breathe!!
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Thanks - I am feeling a little better each day. Valerie - I hope you recover soon!
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Hi Ladies- long time, no chat. I hope summer is off to a nice start for everyone.
For me, tomorrow is the 6 month follow up mammogram, appt w BS is A few days later. I didn't sleep last night, I know I won't sleep tonight. I've been edgy for weeks. I had 2 ADH lumps out in November, found after vac needle biopsy, a procedure I characterize as barbaric. I think about having more of those and I feel my stomach in my throat and a tightness in my chest. I would rather have lumpectomy than that needle- I have large dense breasts and the ADH was on the chest wall- such badness, that procedure! I had an MRI in Jan and they found more suspicious spots in same breast but I begged off biopsy because I didn't feel nearly healed enough to start that again. But 3 spots in the same breast is not good news. And I was supposed to start Tamoxifen but refused.
It's a major reassurance to know so many with ADH went the PBM route. I have decided same pending outcome of this follow-up. I have some questions for those of you who went through it:
What is the recovery like? Which kind of implants are preferable? How soon do you go back to work? Can you sleep on your stomach ever again? I assume it's inpatient but one never knows these days... If you do stay in hospital, for how long? How do you find a doctor that will do it if the current one balks? I am thinking NS PBM is the only thing that will let my mind rest and let me carry on. I worry as much -or more- about the tests as I do developing full blown BC, which itself seems is only a matter of time.
Thank you for your kindness.0 -
Kris - your experience sounds alot like mine. I had that stereotactic biopsy - I think a man must have invented it, it's so uncomfortable. I had very small breasts though - so it was very hard for them to do
I had nipple sparing masectomies - didn't know that was possible but my surgeon recommended it - since it isn't cancer that is a great way to go - but find a doctor that does it. The surgery really wasn't bad for me, I stayed one night in hospital, pain pills for three days and then switched to tylenol. My plastic surgeon uses silicone implants, the surgeon removes the breast tissue and then the plastic surgeon puts in the tissue expanders, those are filled over serveral months and then exchanged out for implants. I don't work, but you would need to take off serveral weeks. I am a stomach sleeper and it was hard with the expanders in - but now I can sleep on my stomach. I too felt like I was waiting to get breast cancer. My risk went from 40% down to less than 5%. PM me if you have any questions - I would be happy to discuss this further if you have any questions. Good luck and keep us posted - hugs, Valerie
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Hi ladies - a little over two weeks out from my surgery and I am starting to feel pretty human again. Still bruised, tired, and sore, but much better than I was. I am concentrating on trying to straighten up better when I walk to take the pressure off my lower back. But all in all, things are going very well. Had a follow up checkup this week and the BS told me it turned out to be a really good decision on my part to have opted for the surgery given the findings of the path report. BS says no need for any more "high risk monitoring" because my risk level has been knocked down to almost nothing. I can't even begin to tell you how thrilled I am about that!
For those of you considering the surgery - I hesitated for quite some time, but finally reached the point where I simply couldn't stand the thought of yet another biopsy. My family and doctors were very supportive all along, but it was my decision and I was finally ready to go. And now, even with the physical discomforts relating to the surgery, I am still SO glad I did it.
Thanks to all of you on this board for your support - you don't realize how many people are in the same boat till you read all the posts.
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