TRIPLE POSITIVE GROUP

ashla - yay!

nunci - as one who had a complete hyst/ooph at the age of 45, developed osteopenia, saw my cholesterol go from 150 to 260, and got breast cancer anyway, I would recommend that you seriously consider whether such a drastic surgery at your young age is appropriate.

Nunci,

Concur with the others. Your doctors certainly know more than we do about your case but it does seem like overkill with the hysterectomy. Definitely, definitely get other opinions.

Thanks for all the good wishes. It is important to hear the good news too!

Kathec,

The count for NED starts @ surgery. I think the "assumption " is that surgery removes all evident signs of cancer. The rest of the treatments are for stray cells. I believe that is pro forma. Yes I did neo adjuvant chemo.

NED is when there are no obvious, evident, scannable, palpable, X-ray able etc. signs of cancer. Of course we never know for sure.

Whether to stop Tamoxifen depends on the surgeon and how involved the surgery is - I would put a call into your PS.  With it being a DIEP and the chance for clotting, I would suspect they will tell you to stop Tamox a week or two prior and not resume until a week or two post, but you will need to get advisement from your surgeon for your particular case. 

Nunci, i concur with the others.  I guess one other question I have is if you have any family history of bc?  i see that you tested negative on the brca test (good), but maybe there is some other reason you are being recommended such an aggressive approach?

Have you guys checked out this article posted in the community.breastcancer.org/forum/78/topic/802153 thread. 

Some Breast Cancers Require Longer Tx
Breast cancers with high-level estrogen sensitivity had a significantly
greater risk of late recurrence, possibly indicating a need for more
than 5 years of adjuvant hormonal therapy, British investigators
reported... read more linky

Hi, Londa 505,

from the same investigation:

In contrast, women with HER2-positive, highly estrogen-sensitive tumors did not have an increased risk of recurrence beyond 5 years, as reported at the European Breast Cancer Conference (EBCC) in Glasgow, Scotland.

Best,

Usha

Thanks Lago and slousha - I was trying to see if this article gave us Triple positives any reason to continue on hormone therapy after 5 years - but didn't really get that from the article and wondered if anyone else did.  I already consider that I had my reoccurrence - LOL - in the two weeks after I found my first one in the left breast.  I know  that is not the case LOL - but If I think about it that way I think I already had my double bad luck - so I am good.

naivi-I had a vaginal ultrasound before starting Tamox. I wasn't due for a pap for 6 months and he didn't do one of those, just the ultrasound. No problem with coverage.

Nunci-we have similar diagnosis. I'm a lot older though, lol. At diagnosis, I was lobbying for the whole surgery thing. On the hysterectomy front, I got nowhere. Every single doc, including my OB/GYN said no way, not necessary. So I didn't have one and am now glad. Since I take tamoxifen, the ob/gyn does a via final ultrasound every six months to monitor. On the mastectomy front, I chose one because I thought the stress of monitoring my breasts for recurrence every six months was more than I wanted to deal with. had I been your age, I am not sure what I would have done. 

I interviewed two breast specialists and three oncologists so like everyone else said, get another opinion so that you can weigh your options and decided carefully what works best for you.

Thank you Camille.... Trying my best to fill every moment & relationship with value & meaning as I should have done before. 

Hard to remember that some days.

goutlaw, that's just awful about that other woman. 

in terms of you, if I recall, you had a pet scan and/or a ct scan, didn't you?  I thought you had some kind of scans that would show mets, and they came out clear.  So that should set your mind at ease a bit. 

 in terms of the ooph, do you need a hysterectomy as well as an ooph?  Might be a good idea to keep your uterus if you can.  I'm still not clear as to why they would say remove your ovaries rather than giving you Lupron shots or something.  the only thing I would say is there are a lot of down sides to an ooph and I hope you are clear as to why that is being recommended for you.  I wish you luck, whichever route you go.

fluff, that sounds wise.  I guess I always assume that those who are early stage and have distant recurrences in the first few years, weren't really early stage to begin with.  Do you know if that is true?

I had my base line dexa this morning. They only scanned my left hip and my spine. The tech said that is all the protocol calls for. Is that all everyone else had done too? I thought it was a full body bone density scan.

loved your "wish I'd known" post - so very true. This whole experience has been laced with so much pressure - followed by the "it's your decision" underscored with ( if you don't mind risking your life I guess we don't)

anyhow - through my 9th cycle of Herceptin - into my second week of Rads - Mastectomy last July - Holy Crap expander & reconstruction/reduction February 10th - finished 6 cycles chemo/herceptin in January.

feeling like some of my supporters have lost their initial interest in this "warrior" and/or are just tired of my talking about it all the time can't say I blame them, I'm tired too

anyone found anything new for dealing with nueropathy? developed it in my feet at the end of chemo & it's putting a cramp in my shopping...seriously it's quite painful. I have actually found using the aloe/lidocaine ointment for sunburns is soothing as opposed to some of the ointments that seem to increase the "burn".I am also thinking of trying acupuncture...I am open to suggestions

wishing you all find the strength & courage you need to face the "cure"

~~Sue

Question re: the dexa scans--I thought we were supposed to get one every year if we are on Arimidex.  I've been on Arimidex for 4 years now.  I think its been 2 years since I had my earlier scan.  Thanks for any info on this.

Thanks, Moonflower!