Help-cant make a decision!

impositive · December 2009

At 43, Ive been diagnosed with a 2 cm IDC, ER/PR -, HER2+ BC. Had lumpectomy and SNB, 8 nodes removed, all negative. Unclean margins, however, DCIS in caudal margin. My pathologys differ a little; biopsy-grade2, absence of necrisis/calcifications, in-situ not apparent, ER+ 1 - 4%, (which I understand is clinically negative.) PR-, HER2+.... and the path after lumpectomy- grade3, central necrosis/calcifications present, DCIS comprises 10% of mass. ER, PR & HER2 studies were not performed on lumpectomy tissue at that time.

Is it safe to assume the lumpectomy path is more accurate?

Was a little freaked out when Onc strongly recommended chemo so he said since my path showed 1 -4% positive for ER, we could do the Oncotyoe DX for a little peace of mind. (Although the test's clinical experience is with ER+ women so it is unknown whether it is applicable to me.) My score came back with a Recurrence score of 78 and ave rate of distant recurrance of 34%. Based on that...on with chemo, I suppose!!

My delimma at this time is this; Should I go back for 2nd lumpectomy with rads or opt for bilat mx, without rads? Both Grandmothers are BC survivors with bilat mx but Ive been tested for BC gene and was negative. I currently have saline breast implants that were placed 12 yrs ago and again 3 yrs ago because of leakage. I'm concerned how they will fair with radiation and I'm told with mx, I wont need rads. Also, if cancer were to recur after lumpectomy, once Ive had rads, cant do skin sparing mx, right? I've read here that they dont put implants in for recontruction until after rads because of skin issues and capsular contracture. Oh yeah, also had MRI before lumpectomy to make sure there was nothing lurking elsewhere in this breast or the other. Nothing found...BUT if they found DCIS in addition to IDC after my lumpectomy, why didnt it show on the MRI? Could there be undetected DCIS in other breast then?

Was told by breast surgeon I could go with a skin sparing mx. Since I already have implants placed behind the muscle, does this put me ahead of the game as far as tissue expansion? Who does the mx? Breast surgeon AND Plastic Surgeon? I havent met with a PS. (The doc who did my augmentation(s) is retired.)

Since it DCIS that is left behind, my surgeon says I can take a little time deciding. I meet again with Onc to more thoroughly discuss this on Monday but all these questions are driving me crazy and Ive never been a very decisive person anyway.

Sorry about rambling, just looking for a sounding board and maybe a little advice from someone who's been there.

riverview817 · December 2009

Well, I'm new to all of this... I did have a skin sparing bilateral mastectomy using the lat flap procedure. My left breast was clear, but I had both breasts taken for peace of mind. My surgeon was fantastic and was able to do expanders right away along with nipple/areola reconstruction. I woke up after a 9 hr surgery with breasts. I had high grade DCIS and also invasive cancer. It was best to take the breast. I have radiation after chemo, so probably in late in the spring. Because of where the radiation I may be to deflate one of the expanders. But what I've learned is to feel like you have the best doctors to talk to. I don't think already have implants matters, but I'm not sure. Because with a mastectomy they take out everything. So you'll need to choose a new way (surgery) to create your new breast. The expanders help shape the muscle that now will make your breast. If they just put in an implant it would squish to the shape of a tennis ball.

It's whatever gives you peace of mind. Having to go back for a second lumpectomy though... Just keep talking to your doctors and other people on the site. I've found this is where I get a lot of good information. You just need to keep your health in mind. I don't miss my breasts at all. I have new ones, it's just the way it is. I'm going to have silicone implants replace the expanders when I'm done.

Some people have to get their expanders filled along the way, my surgeon was able to give me basically back my original size at the time of surgery. It's been just a few weeks and I have hardly any scaring on my breasts, just my back....which are healing great!

I've always made all my decisions so far with that old saying in mind, "If you can put your head on your pillow at night and fall asleep without feeling guilty" then you've done the right thing. This is all very personal, so ask lots of questions and when you go to sleep at night ask yourself what your fears are...if you can get to point that when you do go to sleep that you feel that you have done everything you can, you'll sleep just fine

mawhinney · December 2009

During your lumpectomy a sample may have been sent to path for a quick, preliminary testing & report. You want the info from the final, more thorough path report that was done after the lumpectomy on the tissue taken during the lumpectomy.

I'm a little confused. Did your doctor recommend a 2nd lumpectomy?

Make a lists of questions for each doctor you will be seeing - breast surgeon, PS, radiologist, oncologist etc. This will help you clarify your thoughts and concerns. Take the list to appointments & jot down notes or take someone with you to jot down the doctors answers.

impositive · December 2009

mawhinney,

They didnt do a frozen section during surgery, they sent the tissue from my lumpectomy to the lab and I had to wait a few days for results. So I guess that would be the more accurate pathology, as opposed to the biopsy pathology results.(?)

The breast surgeon met with me to deliver the results, unclear margins. They found pre-cancer cells (DCIS) in the caudal (lower) margin. She said my options are to go back in and get more or consider mx but she suggested I wait for the results on my genetic test to see if I had the BRCA1 or 2 gene. ("That would help to make my decision if it were positive for that gene.") That test was negative but I am still wondering if I should maybe consider a bilat mx due to possible DCIS in the other breast and my existing implants being compromised by radiation. My natural breasts are small B so without the implants, more tissue removal would be disfiguring anyway.

Ive listed some of these questions for the appt with my onc on Monday.

Thanks

Estepp · December 2009

I am sorry you have to make this choice...:(... I wish we all did not have too!

I will tell you what I know.

If you have not had rads... and you need to go back in for more tissue removal..and have implants now... I personally would go for the Bi-lat anyway. There is a really good change you will not need tissue expanders. ( ask PS)... and just go strait to silicone gel implants ( very soft)...

if you have to radiate the breast with implant you have now.. there is a good chance of issues.

It is all your call... you are the boss of this choice.. ( horrible I know)... you will make the right choice for you.

PM me anytime if you have more questions.. ok...

oh...

I did... 5 months chemo.. then mast with TE put in and filled to full in 6 weeks.. then did rads... then implant. I am doing ok. BUT.. so many womens skin does NOT do good through radiation. This is where the real trouble lies. My skin did well... I know others.. here on BCO.. who's skin did not.

So... at this point.. YOU still have time to call the shots.

God bless you in your choice!

Laura

impositive · December 2009

Wow Riverview817, sounds like you've done great, glad to hear! How did you go about finding a PS? Are there ones that specialize in reconstructive surgery of the breast? The ones I have had experience with are mostly cosmetic surgeons, I dont know their experience with breast reconstruction. Does that breast surgeon do the removal of the breast tissue along side the PS who does the recontruct or does the PS do the entire thing?

So if they have to remove the expander for rads, doesnt that set you back a bit. Ive read that rads makes your tissue shrink, compromise blood supply, etc. So if rads are part of your treatment, it's usually recomended that you wait to do reconstruction until after. My surgeon said I probably wouldnt need rads if I went the mx route, just chemo, since they are removing as much of the breast tissue as possible. Is that not so? This is so confusing...

With mx they cant use implants alone? They have to transfer some tissue also? Do you mind if I ask why you chose the lat flap procedure vs say the tram flap?

Sleep eludes me right now. I think once I have gathered enough info to make an educated decision, I can sleep. It seems there are so many doctors involved in this, Onc, Radiation Onc, Breast Surgeon, Plastic Surgeon, that the process of getting answers is overwhelming. Thank you for your answers and advice. It so helps to talk to ones who are or have gone thru this same process!

impositive · December 2009

Thanks so much for your reply, Estepp. I have read some of you other posts and you just seem to have a "glow" about you. Im strongly leaning your way, bi-lat. I meet with my Onco on Monday and unless I get thrown another curve ball, I will solidify my decision and not look back, thanks to the ladies here. It was my breast surgeon who said no rads with mx. My onco might disagree, I dont know. The rads decision seems to be something you had to struggle with. Do you mind saying why you were in the gray area?

It would be so nice to feel like I've made my decision, no regrets and get on it so I can put it behind me!

suemed8749 · December 2009

Hi Impositive - Welcome! We have a lot in common - you can see my dx below. I had a lumpectomy - dcis up to the margins, so I tried a second lumpectomy and my surgeon found a smaller IDC tumor and more DCIS up to the margin. None of this showed up on MRI. At that point I had a unilateral mastectomy with a tissue expander. My path report showed only "residual cancer calls in the lumpectomy cavity" so no rads. I've had a silicone implant for about 14 months now with no problems - also had a lift on the other side.

Six treatments of Taxol/Carboplatin/Herceptin and then Herceptin for a year, which ended in April. A clear PET scan in June - yay!

I love your statement that you will "not look back" after making your decision. We have to do what's right for us and then move on.

You'll feel so much better when you plan is in place. And chemo was easier than I imagined - I was lucky and had no major side effects.

impositive · December 2009

Hi! Wow, it appears we do have a lot in common. Did you struggle with the whole idea of chemo since there was no lymph node involvement or were you ready to just throw everything at it? Sometimes I feel like it's overkill, (so to speak) but I worry, what if I dont and it rears it's ugly head somewhere else on down the road?

I joked with my onco, "Well, the bright side is, I might loose that 20 pounds of baby weight I've been struggling with for so long." (LOL My baby is 14!) He dryly replied, "Well, maybe not, this may throw you into menopause (ahhh, weight gain AND hot flashes) and the Herceptin tends to make some women gain.

What is your experience with the Herceptin and weight gain? (I'm trying to find the bright side here, lol.)

Did you have a PET scan at anytime before your treatment? (after diagnosis?) I haven't had one and was just wondering if I should. The treatment my onco is suggesting is six of the TCH every 3 weeks then 11 more of the Herceptin for 17 of those total. (Cant remember if it's once a week or every 3 wks.)

Thanks for your post, it does make me feel a little more at ease about the chemo. If that's the route I choose, I hope I fair as well as you did.

lisamcknito · January 2010

Hi mawhinney! I am currently in the same situation you are or were. Awaiting second surg for unclear margins. I also have breast implants. My surgeon 1st recommended mast b/c of implants. I saw Plastic surgeon, she said 1 in 5 have capsular contracture. I am worried they won't clear margins and I would have to have mastectomy. I don't want it!!! I am so afraid! It seems so drastic for DCIS. The data says they don't even know if would become invasive, and survival is the same for lump and mast. Only good thing, no rad. My good friend thinks I should have the mast for piece of mind. I just can't rap my head around doing that!! I don't know what I will do if the margins aren't cleared. lisamcknito

Dx: 11/09-DCIS, grade 2 w/necrosis EST+ PROG+. 1st surgery-margins not cleared.

lisamcknito · January 2010

I posted a reply to wrong name....I hope you get impositive. Hang in there! there are alot of decisions to make during this time. I am going throught it like you. DCIS is tricky and they don't have alot of data on which ones will reoocur or turn into invasive cancer. It is scary. I just don't want a mast. I am awaiting my 2nd surgery to clear margins. The data says survival is the same for mast vs. lump. Only drwback is having to have radiation. If I clear margins, then I will take my shnces on my implant not developing capsular contraction. The PS said 1 in 5 get it. I am really afraid that I am taking a gambling at times for the DCIS reoccuring or invasive Ca occuring. A mast seems so drastic for DCIS. I have talked to a few women who are just like take them off! I don't feel that way and sometimes I feel guilty about it. Hamg in there! Lisa

TiffanyF4 · January 2010

I did a bi-lateral it might not be the easiest decision to make for some but it was for me! I was ready to be aggressive! sounds like you need to sit down again with your oncologist after you have a day or so to ponder all of this and get the facts. Good Luck! Kiss

Help-cant make a decision!

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