Wondering about my treatment plan

dots74

Iwas diagnosed on January 6th. Two days after my 46th Birthday. At the time, they were saying that I had a very small 1.4 cm tumor and maybe a couple of lymph nodes involved. They suggested a lumpectomy and radiation. I came home and after a lot of prayer decided on dmx nipple sparing procedure.

I live in a small rural area so I was sent to a larger city for surgery. I had the dmx with immediate expanders. The tumor they found was actually 5.2 cm. I had 2/9 lymph nodes positive for cancer.

I went for a consult with oncologist yesterday, again in my small rural area, and he he advised 8 weeks of heavy chemo, 6 weeks of radiation, followed by ovary removal. I'm concerned. My oncologist score isn't back yet, but he said it wasn't going to matter because the tumor was too large and lymph nodes were involved so chemo was a definite.

I have read so many stories and articles that say chemo isn't as effective with lobular cancer. We don't have results back on any of the bloodwork or onco test. The cancer is slow growing according to path reports. Yet he wants a port placed and chemo to start within two weeks. I still have my drain tubes in. I'm thinking about getting a second opinion back at the larger city 2 hours away.

Am I overreacting? Is chemo necessary in my case? Is there a rush to get the chemo in there? Could I do radiation first? I'm hoping someone out there can guide me. Have any of you with bigger tumors in a few lymph nodes skipped chemo successfully?

flashlight

dots74, I would get a second opinion for peace of mind. My sister was just diagnosed with IDC and had one positive node. None of her test scores are back either. She had a lumpectomy on 2/13 and will start Chemo on 3/18. Good luck to you!

Badluckbdaygirl

Hi dots, I was actually diagnosed 4 days after my 46th bday (spent my actual bday getting biopsies, mammos and ultrasound). Ugh. I was not node positive, but I have heard ILC is slower growing. I had the Oncotype test done and dodged chemo. I think in the past positive nodes meant chemo, but now 1-3 positive nodes there is a test to see (if I had positive nodes I probably would have done chemo for peace of mind and that I’m a worrier. Your tumor was larger so maybe that’s the reason too and your age. I never disagree with second opinions. I lost my first husband to cancer when he was 33 and have always regretted not getting a second opinion at a larger center. I wish you luck!

moth

dots - you posted this on the IDC forum. I think you might want to hop over to the ILC group and get their input as it would be more specific.

fwiw, I'd want the oncotype back and maybe a 2nd opinion - esp if you feel your local MO is perhaps not as up to date on latest treatment protocols.

dots74

Moth, I noticed that afterand posted in the ilc group as well. I’ve been getting responses from both places. Should I remove this one?

quinnie

I just can't make up my mind. I wish my surgeon would just say "If I were you I would.....". My tumor is small, grade 1 IDC but I had cancer in the other breast 12 years ago and had lumpectomy and radiation. Sometimes I just want to get rid of these breasts but I don't believe in overkill either. HELP

Rah2464

Quinnie so sorry you are having difficulty choosing a treatment path. It isn't easy is it? I think you simply have to follow your intuition along with medical advice and input. Mastectomy isn't the easiest route but then neither is radiation. I chose mastectomy because my tumor wasn't found by mammography or ultrasound due to breast density and that scared me. It was also located closely on my chest wall, left side. So radiation impact to the heart was higher risk.

I hope that part of your treatment and observation plan will include MRI imaging going forward if you decide upon a lumpectomy.

dots74

quinine I know exactly how you feel. Mine ended up being so much larger than they thought. That being said, like Rah2462 said, it’s a very personal decision. Once I had decided on the double mastectomy I had a sense of peace with it. So, I’m glad that’s what I did. I chose mastectomy because I didn’t want chemo, but still may end up with the full treatment plan. I still don’t regret my decision on the mastectomy. I decided a while back that once I had come to a decision I wouldn’t have regrets on outcomes. We’ll see how this approach works out in the long run. Best of luck to you