I Feel like I'm at a Fork in the Road

kim40 · July 2011

Just wondering which way to go.....So I thought I would come here and see what everyone had done.

I had a consult with a PS and nothing surprising there, I'm not a canadiate for reconstruction. I was totally bummed out, but have come to accept it.

Now I'm thinking of having my remaining breast removed? I'm just scared. Scared of the fact that I missed a 5cm tumor, how could I miss it! Scared that I may miss it again....

Has anyone else had these thoughts? What did you do?

Texas357 · July 2011

I actually went back, after my first mastectomy, chemo and radiation, to have a prophylactic mastectomy on the other side. I too was angry that 12 years of mammograms had missed my cancer until it was already Stage 3, and I didn't want to always worry about it happening again. As it turned out, I had the early start of more cancer so for me it was a good call.

KerryMac · July 2011

Kim!! Its great to see you! Sorry to hear you are not a candidate for recon - is it because of Rads? Hope it isn't too upsetting.

As for removing the "good" boob, it is funny as I just had the exact same conversation with my husband over the weekend. I had a BS appointment on Monday (all went very well there!) and I wanted to ask her input on it.

So, she said from a medical standpoint it was unlikely (but not impossible) that I would develop a second primary. She felt I was being closely monitored, (6 monthly mammo and MRI) that I had IDC which doesn't "jump" breasts like ILC, and she felt Arimidex was giving me some protection. Also I do not have a dense or large remaining breast. Although my original lump was huge, it wasn't "missed" (ie I knew it was there) it was just misdiagnosed as I was breastfeeding. She basically said (and has said this to me before) that the cancer I needed to be worried about was the one I already had.

BUT, she did say it was a personal choice and I would imagine there would be no trouble with me getting it done if I wanted it.

So, I am not decided 100% that it is something I won't do, but I guess I am in no hurry to do it. Sometimes I think it would be nice not to be lopsided, I would run flat for example, and sometimes it would be nice to plop around braless without worrying about looking silly. And then all the stress at scan time would be gone, and the worry about another cancer would be less too, although to be honest I don't worry as much about that as I do mets. And quite frankly if it wasn't for the fact that I had to have more surgery and be sidelined by that I would be keener. Keeping in mind that surgery also has its own risks.

So, for now I am opting to do nothing. But I don't think it is a door I have completely shut. Maybe you could chat with your BS when you next se her, get her input on things. Do you routinely get an MRI? I know no screening is 100%, but having one might help put your mind at ease that you have no simmering issues.

bak94 · July 2011

Kim, so you are not a candidate for diep? I saw a ps and he told me I was not a candidate for implants because of body type and previous radiation(breast cancer 8 years ago) and this time I will need radiation on new primary side plus bmx because of brca1 positive(had lumpectomey first time). I have not consulted with diep doctor yet, the ps I saw doesn't do them but recommended that is what I should do. My mo did say I need to wait 1 year before any reconstruction and that bummed me out! I think I would be upset also if I find out I can't do reconstruction. I am not sure if I would rather have one breast and be lopsided or just be flat. I am thinking I would rather be completely flat for the peace of mind, and not having to wear a bra with prothesis to be even-just my thoughts. Can you get a second opinion? Would you keep your healthy breast if you could reconstruct your mastectomy side?

caaclark · July 2011

Hi Kim-

I have often wondered if I should get the other breast removed. I will spare you the conversations I have had with my docs since they sound just like Kerry's. I opted to wait and don't think I will have a mast on the good side. Now, if I ended up having a bunch suspicious mammos or ultrasounds I would reconsider. If I had ILC I would definitely have it removed but I had IDC.

alamik · July 2011

I also felt very upset with myself that I hadn't noticed my very large tumor until I was stage 3C. But I am also triple negative and I have learned that they can "pop up" over night. When I found out about being TN and also testing positive for BRCA 1, I decided along, along with my onc, that I would get a BMX. And even though my left breast was clear on all the daignostics, he wouldn't be suprised if I didn't have something lurking in there. I am also going to be flat for awhile and really haven't decided if I will ever get reconstruction.

Wishing you well!!

Pure · July 2011

So I am having a masectomy in about 3 weeks.I am having the other breast removed. Though it's unlikly I would develop bc in the other breast it was uniikley I would get bc while pregnant and well.

I went to a plastic surgeoun and he said I could do implants with some mucles from my back.

I went to another surgeon-Dr Maxwell in Nashville. He actually in the patent holder of one of the expanders used in bc recon and he also invented the Tear Drop Implant or Gummies is I think what they refer to them as. Anyway he said he can remove my other breat and place expanders in without doing the back muscle. One of the reasons I went to him is he is considered one of the top ten surgeouns in the World and since he invented the expander and implant I figured if anyone could give me implants after rads he could.

With that said I am Italian and I hardly burned during rads..Infact I never pealed so I am a good candidate for implants after rads.

I hate having one boob..It's so annoying and I am so tired of the fear of something happening to that breast. I can't even touch it.I have my husband do the exams. I want to feel normal again. I want to look in the mirror and reconize myself. I got so use to having one boob I would probably be fine with it..but with that said I think I am too use to it..I thinkI accepted something I shouldn't have accepted.... For me I want to be put back together and not have to worry about my prothestis showing. I want to be just like other women. I deserve that...

Everyone is so different in their thoughts and what they need or want to do..There is no real right answer..It's what is right for you.

SharonMH · July 2011

Hi Pure What part of Italy is your family from? I am also Italian and Irish. My family was from northern Italy. Sometimes I think I would like the other breast gone also. I don"t like waiting for something to show up on the other breast. I had ILC bc. It might be easier to not worry about being lopsided.also. SharonH

Anonymous · July 2011

I did immediate reconstruction with the "free tram" flap at the time of mastectomy of L breast. I just have not gone back to have the nipple done. I'm conflicted about it. Been in a funk lately and hate the weight gain on the tomoxifen, and just am not up to seeing more appointments with any specialists on my team. I feel done with this whole crap. I hate the fact I have one breast that is ever so slightly lower, and my new breast mound is round and perky but not nipple. If I had it do do over I would have both of them removed, because I feel so done with this whole breast cancer, post breast cancer body image stress., It's not only that, I'm also supposed to make an appt with a dentist for dental imaplant to repair a bridge, and I am so not into that either.

Barb

jennyboog · July 2011

I did a double as part of my tx plan, I'm also BRCA+ so that helped in my decision. I had 2 large tumors and had no clue until they were basically sticking out my boob so, I figured I could see and feel something better on a flat chest wall...we'll see how that works for me I'm sorry about the recon thing and I hope you find comfort in what ever decision you make.

kim40 · July 2011

It is because of rads that I can't have reconstruction. I wanted implants and it is totally out of the question. All options for me are out because of the damage to my skin and blood vessels. I did 16 treatments of rads - all double dose. Tram and diep, I could do but I would be at risk for a 30% failure, so I really don't want to go through all of that. It was upsetting to hear, but my husband told me that he didn't marry me for breasts....

I do however have a second opinion with a PS on the 8th of August, so I'm really interested in what he has to say. In the meantime, my name is on the list for benign breast surgery in the fall/winter, if I still want it.

I am scheduled to have my ooph on the 7th of September, and I'm waiting to hear back from genetics on testing.. I'm 2.5 years out, it just seems to never, ever, go away.

Kerry! You look amazing! Congrats on doing the 1/2 marathons. You're inspirng! I've got to get my butt back on the exercise wagon!

kim40 · October 2011

I guess it really pays to have a second opinion!

I seen the PS on the 8th of August and he told me I could have any type of reconstruction I wanted, whether it be implants, tram, diep, etc. I got really excited when I heard this. I opted for the diep right then and there.

So after some thought and careful consideration, I called the PS office and told them the diep wasn't for me, I'll take the implants instead. I really didn't want an invasive surgery and I'm thinking the implants are the right fit for me. The wait shouldn't be that long so now I'm just waiting for the "call".

pupfoster1 · October 2011

Hurray Kim!

I am glad this worked out for you! Johns Hopkins where I was treated doesn't recommend implants for rads sides either, but my onc said she's had numerous patients with them have no trouble at all! I did end up w/the DIEP for the "bad" side and had an implant put in on the other (which btw I had LCIS a possible precursor). The DIEP was definitely a lot harder physically as far as the recovery than the mx, but mentally I was in a much better place. I just had the nipple recon and am now waiting to have the permanent tattoos.

Keep us posted on how you're doing!

Sharon

kim40 · October 2011

So I got my call! I will be getting new boobies on the 29th of November! Just time for Christmas! I'm so excited.

So my next question is should I still go ahead with having my ovaries removed on the 17th of November. Will it be ok to go for another surgery two weeks later?

Did anyone experience this? I just worried that my body won't be recovered enough to undergo reconstruction.

Thanks!

PlantLover · October 2011

Kim - I hope you don't mind but I have a couple of questions.

How long ago did you have your mastectomy & radiation?

Do they have to do any special type of procedures to your skin since you've had radiation?

Did the second opinion doc tell you why his recommendation that you are a candidate for reconstruction was so different than the first doctor?

kim40 · October 2011

Hi Plantlover

Don't mind at all.

I had my mastectomy on January 13th, 2009. I had 16 sessions of radiation, boosts each and every single time I went.

They don't have me doing anything special. When I was going through radiation, I applied a lot of aloe vera to my skin and I didn't burn or peel. I was very lucky that way.

My second opinion told me that I am a really good canadiate for reconstruction. He had a long hard look at my skin and told me that he didn't see any reason why it wouldn't hold. My first PS that I saw, really didn't take the time to ask me too many questions, and only glanced at my skin. My second PS was very hopeful so I have to trust his judgement.

Are you thinking of reconstuction also?

Pure · October 2011

Yeah Kim!

@Plant Lover

I had my masectomy a little over 2 years ago. I first got expanders...They are currently in..The exapnders stretch the skin and the muscle. The week after Thanksgiving I will have them expanders taken out and the implants placed in..It has been a very easy process FOR ME... No real pain, surgery easy, no side effects, skin has handled the implants-even on the radiated site. The next step, the implants is suppose to be pretty easy in comparison to the expanders. I had 2 opiouns as well and got completly different answers..I think it came down to skill and know how of the doctor...

Rachel1 · October 2011

I just had a diep 4 wks. ago. I couldn't have implants on the radiated side (I had 34 rads). My surgeon said it was too high a failure rate. I waffled between the lat. flap and a diep, but after talking with a few friends who had issues with the lat., I chose the diep. I was going to do an implant on the non radiated side (partly because I don't have a lot of body fat, but I opted for small breasts and both diep. I must say that at 4 wks. I'm feeling pretty dang good and I like that I'm not dealing with expanders and possibly replacing an implant in 10 yrs.

Make sure you check your surgeons references. Also, find out how many of your type of surgery they do per year and what their failure/success rates are.

Rachel

stephanie82510 · October 2011

So what is a diep?

I always knew I was going to get breast cancer. I started looking for it when I was 28. At 47 it showed up large - the 2008 non-digital mammo didn't show it but the 2009 digital found it way in the back (docs could never feel it even with the pictures showing them where it was- I am a larger DD said the nurse and not to feel bad that my monthly exams couldn't help any). ...my lumpectomy took 1/3 of my boob and left my nipple pushed to the left. My new hubby and I are okay with that. I have finally decided I want my other boob made smaller to match. I hope to see a doctor soon. I have no idea what to say or how to ask. I have been a treatment gypsy (i have lived in 4 states from Nov 2009 to Oct 2011 ) and really have no trust with a med onc right now. Each onc criticizes the previous one...I can live with the possibility of keeping my boobs and the IDC risk in either breast coming back. Lumpectomy, recision, lots of bad nodes removed, oophrectomy, TAC and 37 RADS and now Femera...all of that improves the odds for a stage IIIc...the 5 year odds are not so great with or without the boobs anyway, you know?

New hubby - I was in front of the divorce lawyer only 12 days after my first chemo day; the day my hair started falling out from the chemo. I met my current hubby six months after the divorce and we eloped in our sixth month together. I am joyful most days. Cancer is in a compartment (I am like a man in that way.) It sneaks out in funny ways and at odd times. But overall the odds do not matter, I could get hit by a bus tomorrow while crossing the street. I choose joy.

So, has anyone had what I guess amounts to a breast reduction so as to match a breast with a lumpectomy? Is the fork with additional surgery going to make the reflection in the mirror any better? I know this breast reduction is for me and my self perception and no one else. But will it actually do what I think it will? Any one relate to this rambling?

PlantLover · October 2011

Kim & Pure,

I had immediate reconstruction after my bi-lat. TEs to implants. I had to have the left one (BC side) removed due to complications from radiation. My skin is extremely tight on the side where the implant was removed. I don't see how they could put an implant in there without getting skin from somewhere else.

Kim - I was thinking maybe you had to have some additional procedure done. I'm guessing, unlike me, you have loose skin that would allow the implant. I didn't know that was possible after a lot of time had passed since surgery.

Anyway - very happy for you and good luck!! Thanks for answering my questions!

kim40 · October 2011

I actually don't have any loose skin at all. When I was diagnosed, the question was asked did I want reconstruction and I told them flat out no. I didn't want anything to do with breasts, I just wanted them off.

But at almost 3 years later, I find myself regretting my decision. I don't know how everyone else feels, but I don't feel whole. I have self confidence and good self esteem, but there is something missing.

They would have to do a tissue expander first, that's for sure, that is the only way they could do it. I don't want my breasts any bigger than they were (b-cup), I just want to feel like me again.

Rachel1 · October 2011

DIEP breast reconstruction is an advanced technique in autologous (own tissue) transfer. DIEP is a refined version of the TRAM flap, in that the DIEP utilizes only the blood vessels, fat and skin from the abdomen. Unlike the TRAM flap, DIEP preserves the rectus abdominus muscle(s) thus allowing for preservation of abdominal strength and integrity. Though DIEP can be performed many, many years post mastectomy, in many instances DIEP is performed immediately after mastectomy.

Skin-sparing mastectomies are now being performed by many doctors, instead of removal of the entire breast. In a skin-sparing mastectomy, the physician removes the breast tissue, leaving the outer breast skin "envelope" intact. The "envelope" is then filled with transferred tissue, which creates a breast that is very close to the original. Many women are not aware of skin-sparing mastectomies or of DIEP and their benefits.

Some Plastic Surgeons may not inform women that DIEP reconstruction is an option. There is a bit of consensus that when this occurs, it is probably due to the fact that the Plastic Surgeon does not perform the procedure. A Plastic Surgeon may generally "push" the surgery he or she is most familiar with, which is understandable. DIEP may sometimes be "poo-pooed" by some Plastic Surgeons. This may occur in instances where the physician does not have experience or familiarity with the procedure. There are also Plastic Surgeons who will lay it all out and provide helpful information on all available options for reconstruction, whether they perform the procedure, or not.

stephanie82510 · October 2011

Thank you, Rachel.

Rachel1 · October 2011

Stephanie,

I did meet a women who had a breast reduction on the "good" side and a diep on the tumor side. She looked great. She didn't do the breast reduction to match the lumpectomy side, however. She always felt her breasts were too big and this was an opportunity to reduce -- she's a swimmer and I think being an athlete with smaller breasts was more comfortable.

I just had a bilateral diep and because I am thin I will need an additional fat transfer -- think liposuction -- that kind of stinks, but I knew going in I just didn't have enough belly fat.

I know what you mean about seeing the plastic surgeon and not knowing what to ask. In many cases they will take the lead. They'll look at your body and the radiated skin and then go over the options available to you. It's definately a process!!

Rachel

PlantLover · October 2011

Kim - thanks for the response. My situation must be very different than yours due to my radiation damage. My skin is so tight I can't imagine how they could get a tissue expander in there.

Please let us know how things go!

I Feel like I'm at a Fork in the Road

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