Mastectomy--what did you wish you had known?

justamy

That I had a choice who did my plastic surgery. I was just told who was going to do it and they were terrible. I've had 3 revisions and am now going to a new doctor for my 4th because of asymmety and pain.

How much my sex drive would decrease.

Really about any possible side effects. Nueropathy is my worst one.

How much I would miss my breasts. I needed therapy after.

AdAstra

That there would be some things that I would not be able to do after surgery, and that I would not know that I couldn’t do them until I injured myself trying. (I had some muscle removed as there was an invasion into my chest wall.)

That lymphedema really is a thing.

That I would feel so misunderstood by so many people in my life

AbbeyNormal

This is an old-ish post but it deserves a bump.

Wish I knew the pain.

I'm 11 days post op (double mastectomy with sentinel lymph node removal and TE's). The first 4 or 5 days were awesome. Just a little soreness. Then, I'm told, the anesthesia fully leaves your system. The soreness has become pain. This is partially my fault, I'm sure, because I'm not taking any narcotics (hydrocodone), just 600mg of ibuprofen and Valium. I literally can't even wipe myself yet. My sweet fiancee does it and kisses my tears of embarrassment.

Wish I also knew that doing my arm exercises fills my drains up faster. I know the arm exercises are necessary but so is a low drain output to get them removed.

Also wondering if why I'm so ok with looking in the mirror at my naked body without shedding a single tear is PTSD or maybe shock? I anticipated more of a reaction before surgery. Wondering if that will hit me hard someday soon.

parachutes

I wish to god they would have told me I could have had the mastectomy and the DEIP in the same surgery, especially being diagnosed with pre-cancer

Meow13

Me too I wish I could have had the diep at the same time instead of 4 months later.

DebAL

good question. Please be 100% confident with surgeon performing the mastectomy ( i had one doing each breast) and PS. . So 3 surgeons. If something feels not quite right with one of them then listen to your gut and find another. I did not feel comfortable with my first PS ..just couldn't put my finger on it. Told my surgeon, 2nd one was a perfect match! Do your research and go in with questions. Some women don't know that nipple sparing or skin sparing is an option. Not everyone is a candidate but ask! I had nipple sparing and was fortunate to have inframammary incisions so they are hidden in the creases under my breast. Follow your restrictions on lifting and do stretching exercises if they are given to you etc. One other thing, if you feel your movement of shoulders , arms are not back to normal by 4 weeks ask for PT consult. I had 4 drains longer than normal so I was not cleared to do exercises. My paperwork said I should have normal movement by 4 weeks and I did not. Physical therapist said she wished more people would arrive when I did rather than wait. I progressed quickly with the right stretching exercises and her massaging around the armpit and shoulder blade areas. I only needed 4 visits. Best of luck to you!

1redgirl

I am 4 weeks post op mx and lymph node dissection. I started PT a week or so ago. I would highly recommend. I faithfully do exercises and massage. I do many while taking a shower. I still bind my chest and arm. I still get swelling. My arm was horrendous the first couple weeks. Numb and crazy sensitive at the same time. I could not think of touching it. Shower water was like raining nails. Now the water relieves that sensitivity. My armpit still is bizarre feeling, but I massage it and it feels better.

ReadyAbout

Has anyone on here done the prepectoral reconstruction? I am having bmx, snb and prepectoral reconstruction on the 16th. I've talked to several women who have gone through prepectoral and it seems like their recovery was a bit quicker than women who had traditional reconstruction.

DebAL

Ready, i did. So far so good. TEs filled a bit at time of mastectomy and I had 3 fills one week apart beginning 4 weeks post op. So for now I'm waiting (due to chemo) for perm implant exchange in July and possible fat grafting if needed. No complaints so far!! Best wishes to you!

helenlouise

I'm doing neo adjuvant chemo for IDC left ATM with surgery ASAP. My gut say bilateral. I do not plan to have reconstruction. I believe my surgeon has reservations about prophylactic MX.

Anyone had a BMX and regretted not keeping the healthy breast?

I know it's a personal decision but any input from sister survivors would be very much appreciated.

powerparks

Helenlouise, I don't really know all the abreviations yet, but I had a large mass on one side of right breast and another small cluster on the other side of it. I am 41 and large breasted. I was leaning towards getting both breasts removed and the doctors convinced me to only get right breast removed because I was so young.

I am 3 weeks out from surgery. I recently had a heart to heart talk with a male friend of mine and somehow it came up that I didn't plan for reconstruction. He had said that he couldn't talk for my husband, but honestly speaking, men want their wives to get reconstruction. He told me my husband would support me and tell me that it doesn't matter if I had breasts, but it really does matter.

I'm having a hard time now, not only hearing his words but also looking at myself in the mirror. I currently have one drain tube left to be removed and the Dr has me wearing a sling on my right side so I don't use my right arm. I go Tuesday to get the remaining tube taken out and the Dr said I can then stop wearing my sling. I have a hard time imagining myself going out in public. I feel lopsided. I am a triple h on my left side breast and nothing on the right. If you have no intention of getting reconstruction, I would lean towards getting both done. I didn't plan on reconstruction, but now I know I have to get it done. I could wear a fake boob and be able to go out, but knowing my husband is a boob man, I feel I need to get it done for him.

Looking back, I think I would have been fine without reconstruction if I would have gotten both taken off. Having only one now, I just don't feel right without the other one. I didn't think it would bother me to not have breasts, but now, I feel less feminine.

I know now that I only had two choices for me and that is both taken off or one taken with reconstruction done. I hope I have helped you and not made it worse. It is a hard and stressful decision. My prayers are with you on a safe and successful surgery. Mary

helenlouise

Thank you very much Mary for your post, sharing your thoughts and experience.

I am 58, have triple negative multi focal with at least one involved lymph node. I have tested negative for the BRAC panel genes.

Things appear to be much more consultative in the States. I have heard that some surgeons (locally) refuse to remove a healthy breast without a compelling reason.

So far, I feel fairly strongly that I don't want a reconstruction because it will mean multiple surgeries and all the risks that go with that. I am yet to have discussions with the surgeon but want to enter that discussion prepared.

So without reconstruction I think I would prefer to be dealing with a pair of prostheses as opposed to trying to match my remaining breast. Plus a BMX significantly reduces the chance of cancer occurring on the healthy side. I know this sounds negative but the chance of cancer again in my left breast after DCIS in 2013 was 4% and here I am.

It sounds as if you have found peace with your decision now that a reconstruction is planned. I am hearing you about femininity. I am sure this will be a big adjustment for my husband and I. I have heard some women suffered PTS!

Good luck for your recovery and reconstruction.

OCDAmy

I Had BMX and while it was hard for the first week it honestly wasn't nearly as hard as I thought it would be. Take the pain meds, don't overdo. The drains were a pain towards the end, I hated them. I was really sick when I woke up from anesthesia, it was my first surgery. Next time I'm asking for a patch before surgery

reneeCA

That I had been offered reconstruction with implants on TOP of my pectoral muscles. Not underneath where mine were placed. The dissection and elevation of my pec muscles caused frozen shoulder, torn ligament & tensons in my shoulder girdle and left me partially disabled on my right side even though the implants were moved to on top of the muscle a year after BMX.

DebAL

Helen, I don't think you are negative you are just being real. None of us know what side of the coin flip we are on when it comes to recurrence...no matter what treatment options we decide. We just look at all the information given to us and make a decision that we can live with to allow for the least amount of worry. It sounds like you will be well prepared for the conversation with your surgeon. Best wishes for everyone!

helenlouise

Thanks Amy, I will make sure to stay ahead of the pain. I have had a reaction to my first round of docetaxel, that caused both joint and muscle pain like I have never experienced before. I'm not big on pain.

Renee, what a disaster! Have you regained full range of motion?

Met with a friend today who is almost 2 weeks out from a unilateral mx. She originally want BMX but her surgeon convinced her one was the way to go. Whilst she looks well, says she very tired and doesn't think she would have coped with both. She was diagnosed and operated on in a matter of week or so. So not much time to deliberate.

Thanks for your words of encouragement Deb.

DebAL

Helen, know it is not unusual to waiver back and for between BMX and UMX, I did. Risk of infection etc doubles by doing both and must be considered. Each of us has to weigh pros and cons. For me , it kept going back to screening my dense breasts. My surgeon cautioned me that MRI may warrant further biopsies on my healthy breast because of density. Thankfully, I was ok there. Of course you never know till after the actual mastectomy that no other cancers were found. There is always the worry of recurrence and with mammograms not terribly accurate in detecting small tumors I opted for bilateral and am glad I did. It is not an easy decision. I wish you the best as your plan moves forward. Hugs!

aweate

I had a bilateral no reconstruction and have no regrets. I just wanted to heal and be done with surgeries. The implants have to be changed out every 10 to 15 years which is more surgery. I thought about it for a year and had the surgery on March 1st 2018. No complications except for some neuropathy that subsided quickly as everything healed. I am very happy with my breast forms! They feel great and look very natural. My fashion selection is much better because I am so much smaller. My husband has been great because we talked about it so much. Now instead of taking my bra off at the end of the day I just take off my bra and forms. Not that big of a deal. At least for me...i did desensitized myself to images of women with no reconstruction for a month or so before. I am 38 years old.

Meow13

I had a single side DIEP matches the other side beautifully.

Snickersmom

I had a BMX and was 70 at the time (last year). I had the choice of a uni but never hesitated to tell my surgeon I wanted the bilateral instead. He was great; he never tried to change my mind and said it was a totally personal decision for me and my husband to make. So after we talked, I opted for the BMX. I have absolutely no regrets. I hated the thought of always worrying about what I looked like with just one. Maybe if I was younger I would have done reconstruction, but it was not even an option I wanted to conside

There are a couple of things I wish I had known. I wish I had known that I needed to take the time to heal emotionally instead of jumping right back into my normal activities and routine. I wish I had known how insensitive people can be, even when they are your friends. Just because my cancer was Stage 1A doesn't make it any easier to deal with. No, I didn't need chemo but at the end of the day, I still have no breasts so don't minimize what happened to me.

I went along just fine until about 6 months after my surgery, and then I crashed. I didn't want to get out of bed. I didn't want to do much of anything. I hate all the new tops I had just bought and all the old ones I can still wear. Luckily, my big crash came the day before an appointment with my oncologist. I unloaded to him and he immediately told me I needed help. So I started meeting with a therapist and it is helping. She told me that most of us bc survivors do have some PTSD. Now that I know that, I think I am dealing much better with everything.

I did a lot of reading about the surgery, what I would feel physically, etc. and I do think that helped me. I had very little pain - it was more discomfort for the first week until I got the drains out. I didnt have any kind of bandaging - just stitches covered by glue. So maybe that made it feel a little better. The one thing I absolutely hated was having to wear shower drain holders. For some reason, that really felt degrading. Go figure.

I tend to go flat almost 100% of the time. I have gotten used to it and have discovered that nobody notices or cares. And it's so much more comfortable. I do have the big mastectomy bras with the silicone inserts and I hate them. So they sit in the dresser drawer. If I have to wear something under a dressy blouse, etc., I just use a sports bra with knitted knockers or a camisole. If there is an upside to this whole nightmare, it's that I no longer have sweat dripping down between my breasts when I'm out in the heat!!!!

You will make whatever decision is right for you. Don't let your surgeon tell you what to do. It's your body and you have a right to make your own decision. The day I came home from the hospital, I took off my nightgown and showed my husband my chest. I was in tears but he said "well, I didn't marry you for your boobs." And I said "well, I didn't marry you for your penis!" So we both started laughing and that was the end of the discussion.

longjohnliz

I'm Sorry your revision surgery didn't fix the damage done by your first surgery. I'm afraid I might be in the same boat. , but I have to try. If you could keep me posted, I would appreciated it. longjohnLiz