Results of Second Opinions

3monstmama

First a cheery note:  I don't have liver cancer and I don't have thyroid cancer. I just have DCIS.  And yes, thats cheery because much of December --the time right around the holidays of course--was spent getting tested for those various things.

The biggest result of meeting more doctors was realizing how much I didn't know and how much that was keeping me from making a decision.  So after I found out no liver cancer, I requested referrals of plastic surgeons and set off looking for a second opinion.

The first plastic surgeon I met was REALLY helpful.  Mind yoiu he was opinionated but he was very informative and forthcoming.  And he gave me both sides but he was clear to say which side he came down on which was VERY helpful because I felt like the first breast surgeon gave me lots of options but no opinion or recommendation.  For those on the deciding fence, I would recommend talking to a good plastic surgeon about what can be done as far as reconstruction and the impacts of various courses of treatment on reconstruction methods bfore you make a final decision. 

After talking to him, I can say fairly conclusively that I have ruled out DIEP and TRANS flap.  No disrespect intended for those who pick that route but its mega surgery and IMHO, its just for a boob, a boob that will look just the same from inside my bra as it would look if it were an implant. Oh and that boob will have the same amount of sensation and feeling as an implant or should I say, lack there of.    Why bother?  Plus, the plastic surgeon confirmed my fears that recovery from those surgeries last for MONTHS.  Been there, done that with a hysterectomy 5 years ago and my surgeon then did a very tiny incision and it took MONTHS to be back to normal.  I have 3 kids, 3 active kids.  I can't afford a 12 week recovery plus I think I might go insane if I try.

The plastic surgeon also gave me his opinion on concurrent procedures as well as reconstruction on radiated tissue. What he said made sense to me--both the wait until you know for sure what course of treatment you will need AND the idea that radiated tissue doesn't perform as well as unradiated tissue with plastic surgery.  One thing he said was that the idea of a partial lumpectomy that required plastic surgery after was stupid.  Per him, the point of lumpectomy is to preserve the breast--if the breast will be very disfigured, why do a lumpectomy?  Secondly in his opinion, as radiated tissue doesn't do as well with additional surgery, that limits the options to DIEP and TRANS flap versus implants. 

I have also met with a second breast surgeon.  She said the approach would be to start with a lumpectomy, that it would take roughly 3 cm of breast tissue [my patch of DCIS appears to be less than 1 cm] and that if the margins came back bad, further lumpectomy might leave me disfigured so that a mastectomy would be a better option.  Her description of what happened in the procedure was very helpful.  She also said that with ER positive I will need Tamoxifine but that since my DCIS is contained, they won't need to do anything with lymph nodes.  Oh and Surgeon#2 told me I would also need a radiation oncologist which no one had mentioned before.

I liked 2d surgeon more than the first one--again more forth coming with opinions options and information. I came out feeling like I could make a decision.  Its not that surgeon#1 didn't give me information but I had to ask the questions, I felt like a lot wasn't volunteered and since I'm not a surgeon or an expert in cancer, I didn't really know what questions to ask.  A good example would be the issue of radiation and implants and having reconstruction concurrent with surgery for the cancer.  Surgeon#1 was saying it was likely I will need a lumpectomy that took the nipple combined with radiation and plastic surgey but didn't tell me that some plastic surgeons feel that radiation forecloses successful implants.  Now maybe Surgeon#1 doesn't agree with that approach but shouldn't I have that bit of information since it might impact my decision making?  I can't imagine how I'd feel --given how much I don't want mega surgery--if I were sitting post cancer surgery being told my options for reconstruction were only DIEP or TRANS flap.  Or if I found out my implants weren't working out because of the radiation and no one had told me that was a possible outcome before I decided to do a combo lumpectomy/radiation.  Contrast the plastic surgeon who said "this is my opinion and plenty of people disagree but here's why I think I'm right"

Anyrate, now that I'm down to one cancer [yippee!] I am thinking I will skip the big giant half day consult at the mega Cancer center.  My motivation for going there was that I thought I might have two types of cancer and that if I was going to be treated for two things I should have people who dealt with all kinds.  But I don't---I just have DCIS.  So if I can get an appointment with the 2s surgeon, I think I will just go with her.

Any thoughts or questions, feel free.

Kitchenwitch

I know what you mean about "down to one cancer, yippie!" I had some colon scares last fall; still have to have follow-up colonoscopy in the spring. Was enormously pissed to get my mammogram around Thanksgiving, and will be very happy if all goes well with my next colonoscopy.

VinRobMom

i agree, go with the second surgeon's plans.  the first surgeon is just concerned about cosmetic results and not sensation.  So what if after a lumpectomy, you might require plastic surgery?  Would you rather have a numb fake breast with absolutly no more sensation, or a somewhat disfigured breast that is all yours, and that can be improved via plastic surgery?

3monstmama

VinRobMom,

I'm not sure if we are understanding each other or maybe we have different perspectives.  I am pretty small breasted--large B maybe small C.  I am told they will have to take about 3 cm chunk.

The point of lumpectomy is to come out of it NOT needing any plastic surgery--

Second breast surgeon says that if lumpectomy gets too large, it is BETTER to go with mastectomy because a lumpectomy requires radiation which inevitably damages skin and tissue.  What can't be predicted is how much damage there will be. I now have two plastic surgeons saying that reconstruction on a radiated boob can be very difficult and they won't do implants on a radiated boob. 

That would leave me with DIEP or TRAN flap.  IMHO, Both of those surgeries are really big deals.  Maybe I'm wierd but I just don't want major surgery and weeks of PT [to regain muscle and strength in my abs] just so I can have a new boob.  I did the recovery thing from my hysterectomy and that was a complete drag---weeks and weeks of exhaustion, not being able to carry things or pick things up or even just walk a mile.  To me, the most important things are getting through the stupid cancer AND being able to be my kind of mother to my kids.  Lengthy recovery from surgery just so I have matching "girls" isn't a priority---I guess I just don't spend enough time on topless beaches! 

Am I being more clear?

NatsFan

3 - not to be a fly in the ointment, but if your insurance will cover the consult with the mega Cancer Center, why cancel it?  It never hurts to get another opinion. Also, is the mega Cancer Center a Breast Center?  If so, then you will have access to an entire team of breast surgical oncologists, radiological oncologists, medical oncologists, and breast plastic surgeons - an entire team of doctors who are working together and can tie your entire treatment plan together.  You don't have to do your treatment there, but it can be a good thing to find out what a team of breast cancer experts recommends for your particular case.

Also, the first ps who made recovery from a DIEP sound like a horrible ordeal and scared you out of considering it - does he do DIEP?  Unfortunately, many women here have reported that sometimes ps who do not do DIEP tend to make it out to be far more risky and difficult recovery than it really is. If a lumpectomy or mx with implants are the right choice for you, that's great.  But it's important that your decision be made with you in possession of all the facts about the pros and cons of each course of treatment and recon.  

Also, an experienced ps can do recon surgery after radiation - it's more difficult, but it can and is done routinely with good results.  And even if you have a mx, there's no guarantee that you won't need radiation anyway, especially if they find positive lymph nodes.  Again, that may be why it would a good idea for you to keep that appointment at the large cancer center, especially if it's a Breast Center, to get a complete roadmap for all your treatment options, from surgery to radiology to chemo to plastic surgery. 

Just a thought.  Good luck to you in whatever course of action you take.  

3monstmama

NatsFan

You aren't a fly......

I am in the fortunate position of having a choice of more than one really good place for treatment.  The mega Cancer center is not purely a breast center--the place I am scheduled with is.  The whole team of the Breast center already did the big analysis.  I'm actually going with surgeon #2 [Mega center was consult#3].  The medical oncologist used to be at the other center and said given my fact pattern, she would not send her mother or sister to the MegaCancerCenter.  Had I NOT turned out negative on the thyroid and liver cancers, had I a different  assure you, I would have stuck with the other appointment. 

Both plastic surgeons said I was technically a candidate for everything. Both are very experienced at DIEP and microsurgery though one prefers TRANS because he feels DIEP has many complications. To be honest, it wasn't anything they said that made me rule it out, it was more everything I have read here.  What they told me [like that it could impact ability to do certain activities with comfort] and showed me just confirmed my opinion.

I am not sure I agree with you regarding recon and radiation.  Yes it is done but I don't think its gets routinely good results in the sense that one doesn't have to worry about the results, knowing they will be good.  A woman recently posted a long description of her bad results.  For some people thats a risk worth taking but for me, its not a risk I will take for something that for me is purely cosmetic. 

My goal is to get through this cancer and get on with my life. 

Thanks for the luck!  You too!

Mouser

Hi --

Congratulations on the good news! It must be a mind-boggling relief!  And some thoughts, for what they're worth -- 

First of all: I can really understand why you would want to avoid flap surgery -- only i went for *no* recon (But then, i was 65 when i had the mastectomy ...). I had always assumed i'd go for DIEP -- no muscles taken, no implants inside my pectoral muscle - but like you, i had a hysterectomy before i had to have a mastectomy, and that made me very averse to any more surgery. 

On the other hand, even at 65, the mastectomy was a real blow. I had the lumpectomy, followed by rads, at 63. 18 months later they changed technology on me, and turned up a lot more calcifications - nothing new, and my local onc assured me they could 'just' biopsy the calcifications. Biopsy? I wanted them out. But 7 cm of tissue?? On top of the nerve damage fi already had from the lumpectomy?  I decided enough was enough, and had a mastectomy. Maybe if i'd had recon, i'd not have been so depressed ... (or maybe it would have been worse? i hate the numb spots i have; not sure how i'd react to a whole breast...) I have no regrets - i did what i think needed doing. But it hasn't been easy: i was badly depressed for several months, and still feel mutilated - always will...

So -- what about trying the lumpectomy, see how it goes. IF the margins are clean, AND there's no hint of other stuff in the breast, AND the breast feels OK ... you might opt for rads after all. You have time -- because of travel plans and that hysterectomy, i waited 4 months after the lumpectomy before starting rads; *none* of my doctors suggested that this was too long.

Oh -- you should also check how much your lungs and heart would be affected by the rads: that depends on where your DCIS is. The way my sites were, i was told i would lose no more than 10% of 1 lung to fibrosis.

I know - going for the lumpectomy might mean 2 surgeries, if things work out wrong. But it also could mean that you get away with a much lesser surgery, plus a breast that still has sensation (and i gather getting implants isn't exactly fun either).

None of our choices are good ones... these are jsut thoughts for you; in the end, you do what is best for you -- and we're all with you, wishing you well whatever you choose.