Making treatment choices

Posted on behalf of new user chris

i have just been diagnosed with DCIS. i’ve had an initial consultatiuon with a surgeon and my options will be; lumpectomy with radiotherapy, but only if its only in the initial area only, which the consultant doesn’t think is very likely; mastectomy or mastectomy and immediate reconstruction. i’m tending towards the last option but would really like to hear from anyone who has faced this choice to find out how it worked out for her.
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Hi, I was dx with dcis and also a small invasive tumour. I was offered wle or mx with recon. As the surgeon wasn’t sure how widespread the dcis was, he was pretty sure he would be going back in after a month or so, so I opted for the mx with immediate recon. It’s a hard decision to make but looking back 15 weeks later I am glad I made it. Pls feel free to pm me if you want to ask any questions. Xxx

like yourselves. 2 small Left breast lumps. IDC.

  1. 3mm (2mm invasive grade 2), no vascular spread.
  2. 4mm (10mm invasive grade 1), not sure about vascular spread. I had lumpectomy, clear margins, 2 nodes clear, 3 weeks rado, followed by tamo.

Didnt get on with the tamo (have grandparent, greats who had heart problems, aunt) for the first 2 months and it was hell. Very dry skin, especially hands and feet which were cracked and bleeding, eczema after 40 years, vag dryness got infection, legs ache, and feel tight. But did get a very bad virus during rado, which didnt help my immune system when I did start to take tamo.

Had to go back to onco early who said to come off tamo, but they could not offer me anything else as I was peri meno, but they said they were happy for me not to have any hormone therapy. I question this statement, after reading posts on websites and on here.

My onco said i have a 4% recurrence without H. therapy. Still not happy. Have gone back on tamo, as I feel i need a safety net, but dont like the side effects.

Still no better in a decision, as i would like some quality of life for the next 5 years. Seeing surgeon in next couple of weeks. Read posts saving that heart attacks, etc have been experienced by some BC suffers, so not happy.

Any suggestions welcome, and I will also post info i get to u all.

Take care one and all

Pinkie

i also suffered horrible side effects with tamoxifen … i actually felt dreadfull . crying fuzzy brain 3 stone weight gain aching joints you name it i had it , i went 2 see my onc and he commented on my weight gain and in the same breath asked me how i felt… i burst in 2 tears and said like this all the bloody time , he said it was not suiting me at all , as i had no real quality of life and he said he wanted me to come off it , by they i was hysterical begging him not to take it away , it was my safety net i needed it . he explained that he had a big box of tricks, he was not taking me off hormone therapy just shuffeling things round a bit , he prescribed aromasin, and within 3 weeks i felt fantastic, i still have joint pains but i have not got the fuzzy brain anymore, my weight has stabelised and no more tears. im not 2 sure what medication suits ladies who are pre or post menopausal i myself am post meno , i had a hysterectomy 5 yrs ago i had calcifications dcis and stage 1 grade 2 with invasive i had wle and rads x

Posted on behalf of new user Janette:

I WAS DIAGNOSED WITH DCIS BUT IT WAS A MASS RATHER THAN A LUMP.
I HAD THE LUMPECTOMY ON THE 5TH SEPT & WAS TOLD ON THE 15TH SEPT THAT THEY ARE NOT SURE IF THEY HAVE GOT ALL OF IT. MINE DID NOT SHOW ON THE MAMMOGRAM BUT DID WITH ULTRASOUND. I HAVE BEEN TOLD THEY CANNOT ULTRA SOUND THE WHOLE BREAST. I HAVE TO MAKE A CHOICE BETWEEN RADIOTHERAPY OR MASTECTOMY WITH REGULAR MAMMOGRAMS.
I DONOT KNOW WHICH WAY TO GO. I HAVE ASKED IF AN MRI SCAN WOULD HELP & I AM WAITING TO HEAR ABOUT THAT.
I HAVE ALSO BEEN TOLD THAT IF I DO HAVE THE RADIOTHERAPY & STILL CAN’T LIVE WITH THE THOUGHT THERE MIGHT BE SOMETHING THERE I CAN THEN HAVE THE MASTECTOMY WITH RECONSTRUCTION BUT THAT I WOULDN’T HEAL ASWEL AS I WOULD WITHOUT RADIOTHERAPY. I STILL NEED TO FIND OUT THE SIDE EFFECTS OF RADIOTHERAPY.
IS THERE ANYONE OUT THERE WITH THE SAME CHOICE TO MAKE?

Hi Janette,
My situation was different from yours, but I am one of many many women who have had a mastectomy with immediate reconstruction and then go on to have radiotherpay quite safely and effectively (so far as I can tell this far). Some surgeons are reluctant to use implants if a patient is going to have radiotherapy, whilst others will put in expanders (kind of inflatable implants that they inject saline into) before rads. My surgeon told me that she would do a LD reconstruction straight away (using muscle from my back)or I could wait until after rads if I wanted a DIEP/TRAM (tummy tuck) option - but then said I didn’t have enoguh tummy fat for that option.

Only you can decide which route to go, most people on me tend to say “throw everything at it please” but not everyone. It has to be your choice, and you’ll make the right one.