Update...got more info...but need your opinions!

[jessica]

Hi Everyone~
So, the plans for what lies ahead is starting to take shape...I have mostly good(ish) news to report. The PET scan came back clean, except for the spot in my breast is now lighting up. Thank God the rest of me is clean! The path from the FNA came back & it's the same as my original dx in 2002:ER-/PR-, Her2+++, so a "familar foe". As I've said before (especially re:losing hair & being bald again) there is some comfort in familarity...
I met w/my breast surgeon & she's pointed out a tiny spot of invasive tumor, but more significantly, more pervasive DCIS thru the breast. Ironically, even though the invasive tumor is tiny, it's the DCIS that will require a mastectomy. She said that all those PET scans may have missed this mass/calcifications, but even if I had had a mammo 6/12 mos earlier, it's still the same disease & would require the same surgical approach.
I was hoping I could just do a lumpectomy & rads first - just to buy a little more time since I'm only 10weeks post liver resection. I just need a little more time to wrap my brain around another surgery & recovery. I anticipated eventually doing the "BIG" surgery in a few months (i can't even bring myself to say "mastectomy", too scary right now). I just thought it would be my decision how soon.
My surgeon is a wonderful, compassionate woman & she said that it was important that I get my head & heart in the right place before going forward w/the BIG one & that she didn't think it was particularly risky to do the lumpectomy first, if that's what I wanted to do. However, she said she didn't think it would be a good idea to do rads, especially if we're going to do the mast/recon, and doing more chemo would be my onc's decision.
So...I'm scheduled for a breast MRI & meeting with a plastic surgeon tomorrow. Everything's in motion, but I need help, wisdom, opinions, guidance, anything!
What should I do about the R breast-even though all signs are clean & healthy-prophylactic mastec, or just augment? Should I do more chemo, even though the invasive tumor is tiny & the PET scan is clean? What was the surgery like?How long was recovery?
UGh! This is more than I can wrap my brain around on my own...I so value your opinions & input. So comforting to know I'm not alone in this...

Keeping the Faith,

Jessica

[al from Canada]

My opinion is very simple:

Get a second opinion!!

a mastectomy due to a small lump in a stage 4 patient? Doesn't make sense to me, but I'm also not a doctor.

Good luck,
Al

[jessica]

Hey Al~
Thanks for you input...yes, absolutely a second opinion is in line and already scheduled! But, my understanding is that the Mammo/US shows it is the DCIS component of this recurrence-with calcifications more pervasive this time, trailing thru the ducts, towards the center of the breast- and ironically, not the small invasive portion, that requires a mastectomy to get rid of all the disease. We'll see what this other doc suggests...
I'm curious about your thoughts on doing more chemo, even though the PET scan shows NED in the rest of my body?

[sabpri]

Jessica,

I am trying to reply to your post about the masectomy but I am new here and not sure if I am replying right. Anyway, I am not sure what to tell you about the best decision to make and you have been through so much already. I can tell you that I am facing a similar situation trying to decide if I should do a total hysterectomy or just my ovaries and tubes (I am BRCA 2 and one of my Tumors was ER/PR+). I know the more I remove the better, but I am tired of having having peices of my body removed. I have had enough damage to my body and I guess I am willing to take the very, tiny risk to keep a little peice of me inside, so I can truly relate.

I just wanted to let you know that I had the double masectomy even though one of my breasts was totally clean. I just didn't want to take the chance due to my BRCA status and the plastic surgeon said it would be easier to make them even starting from a "clean" slate.

I thought the surgery was very easy, way easier than I expected. It was done in about an hour and a half, I spent one night in the surgery center and the next day I went home. Other than the pain in the neck aspect of the drains (which were out in a week), I really didn't have too much pain (chemo was way worse than the surgery in my opnion!). It was hard to take that first look at the scars after surgery, but my sis did it with me and it was not as awful as I expected. I have gotten used to it (people say how much thinner I look without the boobs - there's a plus!). I was up and around by the next day. I think the surgery is easy, but the emotional part is harder. Overall, I didn't think the whole process was as bad as I expected, physically or emotionally.

Hope this helps!
Natalie

[StephN]

Hi Jessica -

Yes, this "jumping" every time our cancer rears its ugly head is for the birds!
But looks like you have all the appts in place including the 2nd opinion that I was going to mention.

Seems that you have more than one place of tumor in your breast and this is what they are worried about. You do not need it sending off bits to take hold in your lymph nodes or elsewhere, as you have gotten yourself clean of measurable disease. The docs you saw so far seem to think the cancer is confined to that breast. Interesting to see what the 2nd opinion will think. Even if it is the same as your original pathology.
Wondered if the HER2 serum test is a possibility for you. It takes a couple of weeks for the results to come back, but may be worth doing for more information.

I have not had reconstruction, but know several who have, but only on one side. They report that it is not too painful except when the expanders get filled if that is the route you go. Usually the plastic surgeon has a clinic where you can meet some other women in various stages of their recon.

[Becky]

Dear Jessica


Maryanne and I just returned from the LBBC/Young Survival Coalition Conference where we represented our group. There was a discussion by a Colorado oncologist on treating Stage 4 bc patients with disease in the breast. The old thought process was to leave it alone as the reason to deal with the breast is to prevent the spread of cancer to other distant sites (and since that has happened, why make the patient go through that). However, in cases where there has only been a bit of spread to one site, the thought is now to treat (the breast) if the doctor team feels that the distant met is in control. So... since it seems you have the liver in control (assuming you will be getting more chemo after the masectomy (which is what was indicated in this Denver discussion)) go for it to irradicate this nasty tumor.

My thoughts and prayers are with you.

Becky

[al from Canada]

Dear Becky,

Interesting philosophy and turn of events. The fact remains that except for a very small % of the population such as Christine and Ginger, stage 4 is systemic and not "curable". Both Chris and Ginger have been NED for more than 7 years and despite still getting herceptin, many would consider them "cured".

I fail to see the logic of mastectomies for a systemic disease. It's like a dog chasing its tail. Once you think you got it the damn thing comes back. First lumpectomy, then liver resection, next mastectomy, then crainiotomy........ I thought that "targetted therapies" were supposed to be non-evasive; but targetted surgeries in systemic disease just makes me scatch my head.

I think Steph's suggestion is excellent, get the HER2 serum test. I don't think that your condition is that time sensitive and maybe you should take your time on making a decision. There is one school of thought that attibutes HER2 activation with surgical trauma. HER2 is a growth factor after all and growth factors are released during the healing process.

I certainly don't mean to freak you out Jessica but I would hope any cancer patient makes an INFORMED DECISION based upon the best available information available to them. All that being said, I would recommend you get a third opinion as well (plus the HER2 serum test).

As for chemos, I assume you are on herceptin, adding navelbine + xeloda is a highly effective combo. I wouldn't be surprised, given everything I read here on the support board, that you will get to NED.

Again, good luck
Al

[jessica]

Hi Everyone~
Thanks for your input...I know there is no "right" answer, but the more information & opinions from such strong advocates, like yourselves, that I can gather, the better.
The circumstances of my current situation are this: I am only 10 weeks post-op R Hepatectomy, the PET done a week a go shows NED except this 8mm nodule in the L Breast, that didn't show up in the previous PET in November, just prior to the liver surgery. The FNA path shows same disease characteristics - Er-/Pr-, Her2+++. The Mammo/US show pervasive DCIS in addition to the nodule, unlike my primary dx in 2002.
I met with a breast onc/plastic/reconstructive surgeon - yep, all that knowledge and skill all wraped up in ONE PERSON- last Friday & we have come to a new decision...After assessing the whole picture, our decision is to do an excisional biopsy to remove the invasive nodule and put me on close vigilant watch via PET every 12 weeks-for metastatic recurrence & Breast MRI/Mammo/US-for any DCIS changes. Ultimately,assuming that I remain cleanclean, I will pursue a mastectomy to remove the remaining DCIS & will have reconstruction-but that's not until a point in time that we all feel comfortable. They are not suggesting add'l chemo at this time b/c the nodule is tiny & PET says NED everywhere else & TM's are 28...but I'm still waffling a little bit on that decision...we've talked about gemzar/hercep, but b/c i was non responsive to navelbine/hercep in the past that is not an option.
So it seems I've got the best of both worlds in an otherwise crappy situation. We are removing the small, but potentially threatening invasive breast nodule, and allowing me the time to continue to heal while we watch the pattern of my disease, which seems to sort of wax & wane. I still have great confidence that we've really gotten the metastatic disease under control via liver resection, and it's just a matter of time before we rid ALL of the disease in my body via mastectomy. However "non-life-threatening" DCIS might be, it is certainly one of greater concern w/a disease profile like mine, and I want it OUT as soon as reaonably possible.
I just turned 37 & have been dealing with this since I was 33. It is important to me as young, single, active woman, who plans to be around for another 70+years, get married & have the family I've always known I would have, to return to normalcy, in mind & body in the most realistic time frame possible. Since I'm going to have to deal with this disease, a small, small perk in all of this would be to have cosmetically perfect breasts...though I do find it ironic that for me, the path to cosmetically perfect breasts has been a particularly harrowing one, while for others it's just an elective, out-patient procedure & a $5000 charge on their credit card...
Keep the Faith,
Jessica

*add'l comments,opinions,insight wisdom ALWAY welcome!

[julierene]

With you being young like me, I have a little bit of a different opinion about DCIS. My mother was 28 when she got BC the first time. It did not invade the lymph nodes and she had that side removed. 2 years later, she developed another tumor that was more aggressive in the other breast. At that time, they couldn't see the DCIS that was probably in her other breast from the original DX.

For me, I was also 28 with DX. I had no lymph nodes positive too. I opted for a bilateral mastectomy with immediate reconstruction with saline implants. The literature for young women with BC leaned toward doing the bilaterals. Reason being, if you have a genetic condition that predisposes you to BC, your other breast is at the same risk your first one was. Being so young, with so many years left for your breast to develop cancer - I would think about the prophalatic mastectomy. When I decided to have a bilateral mast, I was only aware of the one tumor. After pathology, they found extensive DCIS in the other breast! So I made the right decision. For me, they said I wouldn't be able to keep my breast - that the chances of more DCIS showing up were almost 100%. I honestly feel that those of us DX at such a young age, have a genetic component that we have to deal with. I found mine last year in the p53 gene. 12 years ago, they couldn't find it.

But keep in mind, I went from practically stage 1 to stage 4 in a year and a half. Even an aggressive approach didn't stop this stuff. In the end, you gotta do what you feel is best for you.

I don't regret my bilateral mastectomy decision. To be honest, it's much easier to match two implants than to try to match one implant to a natural breast. You would probably get a better result.