This is where I am at

[Lyn]

hi all, well just when I thought I was going under the knife my onc and radiation onc don't want to disturb my skin because they are not convinced it would not spread in the tissue. Not good news for me because I still want a reconstruction and get rid of the large D cup breast which hangs like a paw-paw (papaya) and stretches the skin over my port so it looks like I have a big button on my chest. Well anyway I am to have 30 rounds of rads starting on 28 February and to take oral Xeloda 1x500mg without a break for the entire radiation, apparently a lot more toxic this way. I am soooooo glad I took the Xeloda for the week leading up to my biopsy because it seems to have stopped it in it's tracks, what ever it is, report say mets from original breast, but also mentions sample of tumour? that I don't understand because no lumps or masses showed up or palapable. I am unchartered waters so unpredictable, but article I read said to have 5FU before and straight after surgery and leading up to disturbing tumour meaning biopsy I take it, Xeldoa being oral drug and both the same but I was told to stop until I start the radiation. Having stitches out tomorrow so will quiz my GP some more.

Love & Hugs Lyn

[StephN]

Lyn -
Have you had a breast MRI on this troublesome one?
Do they have a machine adapted for this anyplace in your area?
Seems like the docs are not sure what they would be taking out - or talking the whole breast?

Asking the question as you said "no lumps or palpable masses" can be noticed. Wondering what testing was used to get this info.

I had something called "Rodeo MRI" on both breasts to make sure as my tissue is (was) dense and the tumor did not show well. It was basically one with "poorly differintiated" cells and well hidden until it became invasive and caused a "reaction" around it, which is the "lump" I found.

[Lyn]

Hi there, they are only relying on the mammo, ultra sound and a CT the rads oncologist did for planning. The chest wall is to be radiated as well as slightly overlapping other areas radiated in the beginning and up to the neck I assume. I just want rid of the breast and asked hubby what I should do, and typical answer do what you think is right if I give you the wrong answer it will be my fault, so will talk to reconstruction doc this month but reading up on the surgery for DEIP I have to wait for 6 months after radiation. What gets me is that I have been biopsied and the wound has healed well considering it is the surface of the problem, apart from this I am healthy and look normal. I would be able to have a MRI so I will ask for one after the treatment.

Love & Hugs Lyn

[Lolly]

Hi Lyn, you may remember that at my first recurrence to my left side (site of primary and subsequent mastectomy) my "healthy" right breast became involved; the lower outer quadrant had a mass, it was tender, etc. I didn't want ANOTHER biopsy, had just had biopsy of the neck node and then the breast decided to act up, but within a few weeks of starting Herceptin/Navelbine it all reversed and was normal looking and feeling. Mammogram that summer was clear except for some calcifications in that area, so I decided to have a right mastectomy as I was at that point NED. Didn't want to deal with too much skin trauma as I still felt on shaky ground, so felt I could always go back and have reconstruction later if my good health continued. I just wondered if you've talked to your surgeon and onc about that angle, if you had minimal surgery now ie: mastectomy, then later after you get things stabilized go back in for the reconstruction since they're going to be transplanting tissue from elsewhere anyway. I'm assuming that they're not planning on using the breast tissue, or if they were and that's why you need to wait till chemo's done, maybe this would be a way around that if they think you have enough tissue and skin elsewhere to make up the difference later on.
Anyway, in my case I've not gone back for reconstruction after all, but that's just me. I could, but decided against it, as it just seems like too much right now. Maybe some day I'll change my mind :)

Love, Lolly

[Lyn]

Hi Lolly, I have a lovely big belly to donate for 2 nice perky C cups, but only get one chance at it because they take the lot, full tummy tuck even for one breast so would need to get both done at same time. I saw my GP today and she agreed that the report was confusing, and agreed with me that the lump on my neck had most likely mutated to the breast as the report said same primary but then again said it was mets, comparing with my first report I gave her to look at and she said they were different except same hormone status and the treatment is the same as agressive, get rid of it quick treatment. I must say and my doc agreed that the Xeloda slowed it down because it isn't as red as it was when she did the biopsy and in fact a pale pink so at least I know it worked, so from now on I will keep them in the cupboard along with the aspirin, how kind of diabetes I suppose. My original report said my tumour was comedo DCIS and in the extract I sent you on our disease it says it is the most likely to progress to IBC.

Love & Hugs Lyn

[Lolly]

Hi Lyn, have been meaning to e-mail you back about the report you sent, it is VERY interesting. My pathology on the primary bc in the left side said the same thing, it started out as DCIS and progressed to IBC(invasive), that correlates with yours I believe.
About the reconstruction; I'm assuming you had mastectomy to the original bc side, and are considering mastectomy to the remaining breast with immediate reconstruction to both sides, a two for one sort of deal!What I was suggesting is that you get the mastectomy on the remaining breast done now if your onc and surgeon think that would be less traumatic at this time than mastectomy PLUS reconstruction, then have the reconstruction to BOTH sides done later when you have the disease back under control. Just an idea and may not be doable for you.
I think keeping on top of it with the Zeloda was definitely a good idea, keep that stuff handy!

Love, Lolly