FrankenBoob--post-lumpectomy/post-RT PS experiences?

Sahmeranah

Hi all -- golly (by which I mean a bunch of four-letter words) I wish I'd found this community in October when I was diagnosed with DCIS! So many smart and fierce women, and such lovely and helpful moderators. Really happy to lurk and read, but I'd also like some advice.

But first a bit of backstory: I had surgery in late November (pretty big area of involvement - about 5 cm): a lumpectomy plus 10 lymph nodes removed on my left side. Post surgery was rough going for me. No drains, bad swelling and pain, weird nerve problems, and generally difficult psychological adjustment to diagnosis, which I guess in truth is still ongoing, but now I'm doing a lot better most days. At this point I am halfway through radiation treatment. it all sucks but is so much better than those ghastly early weeks of uncertainty, chaos, and raw animal fear chaos right after diagnosis. Horrible.

At any rate, radiation and post surgical healing are working their shitty magic on my breast, which is shrinking and twisting upward and to the left. Over the past two weeks of radiation treatment, the incision line has become much deeper, and is puckered and dimpled. It looks horrible -- so much worse than it appeared before RT. Also there is now at least a full cup size difference between my right breast (a generous "D" cup) and left breast (probably now a small "C" which will likely shrink further). I know I'm more than the sum total of my boobs, but that said, I feel ugly and disfigured.

In six months or a year or whatever I plan on meeting with a plastic surgeon to see what my options are. I've been told that fat grafting might be a possibility for me. To help get me through the last weeks of RT it would be especially helpful to hear from others who have had fat grafting done after a lumpectomy, but I'd also love to hear from women who have had breast reduction of the non-cancerous breast to even them out, and any other plastic surgery efforts to improve the post-radiation boob-scape. Also happy to hear general "whatsup" and "howdy" comments.

Thanks!

EastcoastTS

I don't have fat grafting or breast reduction advice (I went BMX route) but can certainly chime in with Howdy!!! Welcome and what's up?

I'm sure you'll get some great advice. And that down the road a great PS (I talked to 3 before selecting one) will be able to assist once you get through rads. Hang in there.

BC does a lot of shitty magic on us all, doesn't it?

Happy New Year.

Sahmeranah

Hi EastcoastTS -- howdy back! Also, wow, it's your DX anniversary, almost to the day. It must have been nice to put 2017 out of its misery last week. Happy 2018 -- may its surprises not make us pee our pants in fear!

Georgia1

Hi there Sameranah, welcome and howdy. I don't have any specific advice for you, but I do know that it's advisable to wait six months after RADS to meet with a plastic surgeon since breasts do swell and then shrink after treatment. On the general "needing help to get through radiation" front, I highly recommend you say hello over on the "having radiation in January" comment board. Lots of great women there who can help raise your spirits during the last three weeks, plus offer practical advice if your side effects intensify. I do wish you all the best.

Lewhy

Hi, Sameranah, you posted exactly what I asked my RO last week! I am on number 7 of 20 rads treatments and I am having a hard time with bras and clothes. I am a full cup size smaller on my right side. I was concerned because I had heard revision surgery is hard on radiated skin, but he said everything can be fixed. But, they suggest you wait a year. In the meantime I can go to a "salon" they have at the hospital and get some help with bras. Ughhh, just one more thing! Good luck and i will follow this topic to see if anyone has some good input for ys!

EastcoastTS

Sameranah:

Thanks for noticing my "anniversary"! It's been a crazy year -- but I can promise you -- it gets better after the initial first months.

I hope to not pee my pants anymore in fear. Ever again!! I wish the same for you.

Albion

Hello! I was diagnosed in August, had a radical partial mastectomy on left, 12/17 lymph nodes were positive so went back for a second surgery and had all nodes removed from left side. Had a reduction on my right to even out breasts, I was a large D, now somewhere between small C and B. I have 6 months of chemo then 6 weeks of Rad. Scared of the radiation because right now I am very happy with my reduction. Nice to be perky after all the trauma. A good plastic surgeon will be able to correct the size and shape after radiation. Good luck with everything!

Albion

Hello! I was diagnosed in August, had a radical partial mastectomy on left, 12/17 lymph nodes were positive so went back for a second surgery and had all nodes removed from left side. Had a reduction on my right to even out breasts, I was a large D, now somewhere between small C and B. I have 6 months of chemo then 6 weeks of Rad. Scared of the radiation because right now I am very happy with my reduction. Nice to be perky after all the trauma. A good plastic surgeon will be able to correct the size and shape after radiation. The node removal was far more painful and harder to deal with than the actual breast surgery, I still have nerve damage and cannot lift my arm above my head. I had three drains in total. Good luck with everything

lane4

Hi, Sahmeranah - I had a partial mastectomy followed by radiation in 2009 and ended up with probably a cup and half size difference between the two breasts. After surgery, my breast did not look so different, but I began to notice shrinkage and other unpleasant changes during radiation. First of all, I visited a mastectomy fitter and got a compensation form to wear in my bras. Then I consulted two plastic surgeons who recommended two very different strategies for regaining symmetry. The plastic surgeon I chose recommended that I wait at least a year to allow the radiated breast to settle. After that year passed, he did a small reduction and lift on my healthy breast. That brought them closer to the same size, but still not quite symmetrical. (I didn't have enough breast volume to allow for much of a reduction.) At that time, the safety of fat grafting was uncertain, so we were reluctant to try that at first. During the year that followed, a large study found that fat grafting after a partial mastectomy or lumpectomy did not increase the risk of recurrence. So I had fat grafting done to help even out the size and smooth a noticeable divot in my treated breast. That was two years post-radiation and I am still very happy with the results. I wish you all the best in your journey!

runor

Hi Sahm: When I was undergoing radiation, my surgery scars got bright red and miserable. One even broke open a teeny bit at the end and I was freaked out about an incision that had been healed up for weeks suddenly opening up. But it was tiny and the radiation oncologist wasn't worried.

Now, a few months after radiation, you can hardly see my scars at all! It's like burning off the top several layers of my skin was a monster exfoliation and you have to look hard to see the lumpectomy scar or node scar. However, my boob has a permanent tan, two tattooed dots that look like blackheads, no hair has grown in that armpit and the lumpectomy boob is pissed off and won't look at me anymore, the nipple pointing off to the left, in a huff.

THe radiation boob is shorter. The good boob hangs lower. When laying on my back the radiation boob sits up on my chest, the good boob slops into my armpit. The radiation seems to have affected the scar tissue quite profoundly and I have A LOT of scar tissue due to shit going wrong on lumpectomy day, all the internal stitches tearing out as my boob filled up with blood. Then surgeon opened me up again, cauterized everything again, placed more markers, stitched me up again and oh dear god, did I hurt! It was insane! And fear of that pain is a HUGE issue when I consider getting surgery to even out my boobs.

Radiation oncologist said to not even consider surgery until a year after rads. It will take that long for my boob to settle down. I worry now that surgery will flare up the lymphedema that I have in the breast. It swells every day and is painful by night, gouged by my bra wire. I don't think anyone else can notice the difference but I can. I like the idea of a reduction because my boobs are too big. But I really am scared to be in that kind of pain again.

Good luck to you with whatever you decide.

Anonymous

I always thought I would do the fat grafting, I have so much to give. But the lymphedema on right side stopped that decision due to pain. The right breast was peeled from inside out, about 3/4 taken then surgeon wanted to put me under again and take more due to a close margin. I didn't. Should have had a recent CT or mammogram, not the two month old mammo. So I was screwed. There was also not a "release" for fluid build up in breast and I popped several stitches and had to go in almost daily to have fluid drained with syringe. By the time surgeon said, well... we could put in a drain he also said it was almost over so no sense in a drain now. I thought, no sense, no sense at all, thinking of him in particular. I didn't get feeling back in breast for 5 years. Upper arm for 2 years when it finally shrunk to normalcy. Now there are other issues that stop me from wearing a bra at all, liver lesions, myositis. So I use a scarf around my neck that hangs down over breasts and hides the lopsidedness and bouncing. Well, right one does not bounce. But I am 60. Younger days, it may have been very important to me to find a way to reconstruct.

Now Runor - I didn't know the reason my lumpectomy boob was looking away from me now was because it is still pissed. Now we know.

runor

Glad to help, Bluebird, and yes, our boobs are mad. Mine seems to hold a grudge.

Sahmeranah

Hiya Georgia1 -- nice to meet you and thank you for the recommendation! Cheers!

Sahmeranah

Hi Lewhy -- ooooh: I too have been the (skeptical) recipient of the "the plastics guy [also, am I the only one grossed out by all these male plastic surgeons who specialize in boob restoration?!] will fix everything after RT" line. I don't believe it, but I'm also just putting one foot in front of the other at the moment. Let's stay in touch and compare notes! Also: I went to one of those "salons" that specialize in post surgical bras and it was actually not the horror show I had anticipated. I did note that none of the women working there have had breast cancer. (Yes: I asked.) The one big plus for me is that I get four free bras a year compliments of my medical insurance. Maybe you do too? It made it a little less shitty to have one additional appointment/stop to make.

Sahmeranah

EastcoastTS: did you do anything to commemorate the "one year" mark?

Sahmeranah

Albion -- hi friend. Thank you for sharing your experience. I'm wondering/worried about your not being able to lift your arm. Do you have the option of seeing a PT/OT? After several sessions, and a lot of work on my own, I can now lift my arm -- but I could not for weeks and weeks following surgery. (My arm is still numb from nerve damage but at least it can go up and down.) I hope your chemo goes well and the radiation after that. Take care.

Sahmeranah

lane4 -- thank you so much for sharing your story. That's really helpful (and hopeful). The puckering and deepening of my surgical scar worsens with each day of radiation, so it eases my anxiety a bit to hear that the fat grafting worked for you. One question I have: did the breast reduction (to even out the asymmetry) cause you problems like the partial mastectomy? Painwise--what was it like? I was in terrible pain for three weeks after my lumpectomy but I suspect that most of the pain arose from the axillary dissection and swelling. Still, the pain and general post-surgical malaise (depression, moodiness, etc.) makes me a bit gun shy about going under the knife for cosmetic reasons.

Sahmeranah

runor! honey! your story about things going wrong on lumpectomy day -- my heart goes out to you. I'm so sorry you had to go through that. I hope that once you pass the one-year mark you make connection with a good plastics person and there will be options for you. Regarding fear of more pain: WITH YOU, SISTER. Regarding lymphedema -- have you met with a OT who can teach you lymphatic self massage? Mine was great. She gave me a DVD to help me to reinforce the sessions. I just checked on youtube and found one segment from the DVD: Maybe this can help you?

Sahmeranah

Bluebird-DE -- good lord. Fluid drainage with needle; popped stitches. Your description brings tears to my eyes because I have an idea of how much pain you were in (I popped just one stitch from fluid build up and the pain nearly made me barf. What you endured is beyond the beyond). The hell we go through... no words. I'm so sorry for your suffering and hope you are doing well now.

runor

Sahm, my boob bled out after lumpectomy and I woke from the sedation in PAIN! Sharp, stabbing PAIN! Found out later that there are layers of internal stitches to hold the shape of the boob together and the bleeding tore all those stitches out, and I could feel it! Surgeon, when she saw my boob the size of a beach ball (no word of a lie) she immediately rolled me back into surgery, opened me up again, cauterized all the bleeders, stitched everything up again and back into recovery I went.

It was a seriously shitty day and the only complaint (and it's a big one) was the absolute lack of pain management. My boob had been gouged around in TWICE in one day with lots of ripping ,tearing and destruction of tissue. They gave me Tylenol. Tylenol has never even so much as gotten rid of a headache for me. I absolutely know that feeling of almost puking from pain. They kept me in the hospital overnight but all I got, every 4 hours, was a regular Tylenol.

Out in our tack shed we have pain killers for horses and if I ever have a procedure again, I'm taking some bute with me in my purse. A hit of that stuff will remove your pain, and all other mental functions, for about 2 weeks straight ! I was bruised to my pubic bone from all the blood that moved into my tissue. I have never had such pain in my life. I cried.

Sahmeranah

Oh my god. I am so terribly sorry that that happened and appalled that they did not give you appropriate pain killers. What you went through sounds extremely traumatic. Did you at least have emotional support from people around you or online when you were going through that -- and in the aftermath, too, when you were recovering having gone through that? I so hope you at least had that small bit of comfort.

Lewhy

Thanks for the bra tip, Sahmeranah! I see my RO tomorrow so I am going to ask. I cannot find a bra that is comfortable. And yes, I think the male PS's are a little creepy too, but I always thought that about male obstetricians too,lol!

EastcoastTS

Sahmeranah:

I know I should have celebrated the one year anniversary. But just a "normal" day. Work/kid, etc. Idk. I wonder if my first anniversary from surgery (2/28) is more the date. That's when the cancer left. But seems everyone here measures by your diagnosis date.

I think I was just so sick of BC -- ugh. Maybe next year I'll feel like celebrating!

lane4

Sahmeranah - I had bruising but very little discomfort after my reduction (I wouldn't even call it pain). My plastic surgeon reduced the volume with liposuction and did a crescent lift on the nipple. As reductions go, it was a minor procedure, but it was appropriate in my case because I didn't have enough volume for a larger reduction. The only sutures I had were around the areola. It was a very easy procedure.

mitzi458

Here is my story, which goes quite a long way back so I’ll try to keep it in a Readers Digest version. Not sure if it will help anyone but hopefully it will.

Dx’d in 2005. Left Side- 7 cm. Stage 3, Grafe 3. Triple Negative Tumor. 2 positive lymph nodes out of 9. . All I wanted to do was focus on getting that bad boy out of me. Never thought about reconstruction. After several chemos, mastectomy, more chemo, then rads....my oncologist felt like I could stop. Then after genetic testing and BRCA 1+, we decided one year later to take the other breast. (Thank God because they found pre-cancer cells floating around). We tried doing recon on that breast at that time but I wanted bilateral DIEP and my surgeon decided I should have unilateral LAT flap. (The day of surgery!!!) Got an infection with my LAT and implant. Hated whole recon experience. So I never went back. Did not even think about reconstruction for over 10 years. I was fine living years with a prosthetic. No one ever knew. I was just SO HAPPY to be cancer free and not think about it. I turned 60 this year. Decided this is the time to do it. Cancer is behind me so i can just focus on recon. It’s a commitment. It will be a full year by the time it’s completely finished. But I will have a brand new body, one that I can can finally be proud of. And new bras!!!!! Not mastectomy bras!!! Exciting!!!!

I switched my PS from the initial double DIEP to Stage 2 and LOVE my new doc. I had NOTHING but burned, irradiated tissue on my left side and a saggy old implant on my right. Now I have two breasts with my own tissue, so they are perky but feel real. Not squishy or hard implants. Plus lots of liposuction for fat grafting - no more fat on my tummy or flanks and hopefully legs and thighs. When I’m all healed, i’ll probably have the best body I’ve ever had, even I’m my 20’s!

My advice if you can.....focus on healing your body from cancer. Go though rads before you try to reconstruct. Let your body and ESPECIALLY your mind, heal from all of that. Put your mind at ease when you go into reconstruction so you can focus on giving it your all. And do your research finding the best doctor. If you are not happy, switch. Travel if you must. My husband keeps saying, “isn’t it good enough??” (Which was not good at all after stage one-two different sizes and shapes and I did not care for my first doc’s approach). I said, “if l’m going to finally do this after 12 years, I’ll go all the way until I get it right!”. Remember.....We are tough just to get through cancer and all of this painful reconstruction. It IS scary. It IS painful. Anyone who says it’s not is very licky indeed! So anything else they throw at us is a walk in the park!!!

Good luck to you. You will get through this and it will all be a distant memory!! Sending much love and positive healing thoughts. ❤️❤️❤️

Sahmeranah

Lewhy I hope you found a comfortable bra. It does not seem like too much to ask for!!

Sahmeranah

EastcoastTS! Regardless of the date you choose to commemorate your anniversary, I'm glad you are here.

Sahmeranah

lane4--thank you for describing your post-procedure appearance and experience. That's really helpful. Hoping you are well.

Sahmeranah

mitzi458 -- thank you SO MUCH for sharing so much of your experience. You are both wise and cool and you give good counsel. You're so right: at this point I should still be focused on healing. I keep wanting to zoom ahead -- and into the past, before I got my diagnosis. Knowing your time frame for reconstruction helps bring that home. Grateful to you for putting this in my dome.

Wishing you good health.