Just diagnosed and freaking out.

[schoolteacher]

Apologies for not logging in recently Rockchick.
Any further news? Your results sound very confusing.

[mum2chloe]

Hi there,
Don't get in the forum much these days.
Just wanted to say welcome and I'm sure you will get a wealth of support from the lovely ladies on this forum.

Hugs xo

[Rockchick]

My current thinking is that:

a) I know this is a systemic issue for me, and that the changes to my tissue did not start in my breast but spread there.
b) The tests have shown DCIS changes as well as "invasive cancer not identified".
c) My lymph nodes are clear. If there is a cancer causing process in my body, it did not COME from my breast. This confirms my own opinion that it spread to my breasts, from an original site, probably my kidney or bowel.
d) Even if I don't have another actual full blown tumour cancer, the pre-cancerous changes are systemic. If I remove my breasts I will just be removing one area of possible tumour activity. Not sure this equates to any increase in survival.What happens then? Do I just keep taking out pieces of myself one by one as they come across them incidentally until I die in a hospital bed? Nah.
e) In the absence of the initial tumour found on core biopsy, the doctor are calling this DCIS, but are also saying it is invasive and can't be identified. This is not a normal result and should heighten their suspicion of metastasis. They should at least continue testing until the cancer type is identified.
f) I have low blood pressure, which is a contraindication for mastectomy, and vascular issues including Reynold's that the lumpectomy has exacerbated. I seriously believe a mastectomy would be too much for me physically and my doctors unwillingness to at least make a half hearted check for metastasis before removing a breast doesn't provide me with enough confidence to agree to more surgery.
g) If my immune system removed the remnants of the little bloating piece of cancer the core biopsy found within a few weeks, I'm confident that it's doing it's best and I shouldn't trouble it with surgeries as well during this pre-cancer phase (if that's what it is). A pre-cancer change found looking for something else is almost the very definition of incidentaloma.
h) if I hadn't brought my original lump, that disappeared anyway, to the doctors attention and merely gone for mammograms regularly they would never have picked this up anyway.

So at the moment my decision is to refuse surgical treatment, at least until I can identify my systemic issues. I've booked an appointment with my GP to get his opinion of my results and try and beg an off-medicare referral for a PET/CT scan.

[jezza]

Wow...you really are a mystery aren't you! Clear nodes is great but understandably annoying that they can't find out what causes the problems there. What is the next step? Is it up to you to decide on treatment? I hope you are given time to discuss your options with your medical team as you have so much to get your head around.

jezza

[Rockchick]

Just a quick thanks to whomever of the admins deleted my unpleasant rave from the day before my results, bless you!

[Rockchick]

So you don't really want the doctors to look at your results and say stuff like "I've never seen...." and let their voice trail off...

I got my results back and it caused quite a gathering of doctors at their review table. Was sitting out in the waiting room during the 1 hour + wait past my appointment time, grr, and watching them with my husband while we remarked to ourselves less chit chat, more appointments, lol, but didn't know it was my results they were all pouring over.

I DON'T have cancer. The one from the core biopsy seems to have vanished (the doctor thinks it got removed by the core biopsy, I think I willed it into regression )

I have DCIS that is all through my breast tissues, and is invasive, but is still DCIS and not IDC? I can't find anything like it on google. There were no clear margins. Still ER+ and PR+. My nodes were all clear, which is a total mystery to me because my underarms have been puffed up for years now to the extent I can't put my arms at my side without losing blood to my hands and getting pins and needles. But it seems I am just fat. Erm.

The options I've been given include having another go, which would be basically a guess because they can't see it in surgery or on ultrasound, at a lumpectomy. Or to bite the bullet and have a mastectomy and monitor the other breast with MRI, or to have a double mastectomy. The mastectomy options come with reconstruction options.

My current thinking is that without a PET-CT scan, which I have lost hope of ever getting, I might as well have the double mastectomy with implants rather than the flap jobs (which are massive, massive 8 hour operations and have a long waiting time) because I'd sort of feel weirdly out of balance I think with only one real boob. If I had two implants I'd also feel weird, but I'd be able to pretend I was at least as normal as a gal with the regular kind of boob job.

[Janette]

I think knowing the surgery is over is a big relief in itself. Waiting for results is the next step. The lumpectomy for me was very little discomfort.

[Rockchick]

Just stopping in to say all went well - sitting at home now with Endone and an icepack - but it's not that bad. I'm absolutely delighted with the lumpectomy scars at the moment, hope it looks just as good with the bandages off but of course expecting it to be a bit different when the swelling goes down and the fat distributes.

The whole day was a bit gruelling time wise, what with radioactive scans and wires going in, but the operation when I finally got there - well, couldn't have been easier, asleep about 1 minute into the operating room then woke up in recovery. Everyone was really nice from the scan guys through to the nurses.

The radiologist who put in my wire, said that there are syndromes that can make you sick even if you have only a small tumour and I could feel heaps better when it was out. I think I must be highly suggestible, I do feel better! Or is that the Endone? hmmmmm

So now just waiting for results.

[jezza]

Well you still have your sense of humour! Glad that you have a breast care nurse and more importantly that you like her. Not sure about the bra thing....maybe one that will feel comfortable in after surgery? It is a bit overwhelming with all the people to see and the forms to fill in....roll on pre-med drugs...lol

Enjoy your book, (I love reading!) though I have often found it hard to concentrate in hospital and found something really light the only thing that I can follow there...too much going on around.

Good luck...hope to see you checking in soon.

jezza

[Rockchick]

Yep - tomorrow (Tues) morning I check in. Wire in, then surgery around lunchtime.

Today was a pre-admission thing where everyone turned up in a horde at 8am and fought for a place in a line, and the paperwork was completed and I was interviewed briefly by a pharmacist, a physio, an anaesthetist and a junior doctor. It took about 4 hours. The breast care nurse also saw me, she is really nice, but weirdly offered me a bra. What is that about? I have never worn a bra, no need, but maybe I was shocking the elderly with my no bra t-shirt look? Oncology is full of elderly people. Bit worried I've been jiggling around braless and making a spectacle of myself, although nobody would call my modest endowments a spectacle surely?

Thanks for the good wishes all, I'm sure I'll be fine. Got a book packed. Maybe there will be fun painkillers.

[Janette]

Hi Rockchick
I had the wire thing done in the morning of my surgery. Good luck tomorrow.

[schoolteacher]

Hi Rockchick
Good luck tomorrow if I have the day right? Hope all goes smoothly and you get the answers you are seeking soon. We have all googled trying to get answers but you have to go with the flow. Knowledge is power in dealing with treatment and helping you make informed decisions so keep asking questions. Take care

[Rockchick]

HI Jezza.

No, I have told my kids instead to cover my hospital visit that I am getting a cyst out (not quite a lie), and apart from that a few close friends. My mum and dad are both in their 70's and although they don't have serious health issues ATM I don't want to precipitate any by stressing them out. Which isn't entirely altruistic, because I'm in that phase of life of looking after parents (my husband's parents both died last year) while they are still living on their own, if they get sick it's going to be partially my problem and I want to concentrate on me. I might tell my brother a bit earlier as a heads up that he's probably going to have to shoulder a bit more Mum time.

I have to go in the day before the operation (tomorrow, eek!) and meet with the anaesthetist and the surgeon again, they said it would take 4 hours. I think most of that will be waiting room time, so I better bring a book! I don't know if this is where I get the wire in or if that happens on Tuesday before the big op.

[jezza]

As soon as I found out I needed an op , I just wanted it done NOW! It's really the only way to get a picture as to what's going on. Unfortunately you will probably still have to wait a few days for path results.

Have you told your kids/parents what's happening? Personally I didn't tell any friends, just close family because I didn't want phone calls etc and people asking me questions I didn't know the answer to yet.

Hugs

jezza

[Rockchick]

It's crazy going through menopause symptoms while trying to make sense of a cancer diagnosis, I probably should have kept taking my hormones an extra week here just for the sake of my doctors.

In a complete turnaround to my horror at being operated on of previous days, I'm feeling quite accepting of the situation and actually kind of looking forward to finding out a more detailed diagnosis. I do hope that it gives me some answers as to my other health issues but if it's X + breast cancer and not X = breast cancer then obviously I need to deal with the breast cancer first anyway.

In future I am just going to let doctors tell me what to do without putting up an argument and accept that no level of intensive googling is going to make me solve the puzzle any faster. It must be sh%#t being a doctor and having to deal with sick people. Saints, they are.