Hi Trudy,

You can call me Beth. Like you, I was diagnosed with breast cancer in my 40's (43). I was diagnosed with what's called an "occult primary" breast cancer - basically no tumor was ever found in the breast, but I did have 2 positive lymph nodes. Like you, I'm also triple positive. I tested negative for BRCA1/2, but did test positive for a gene "variant of unknown significance". I do have some breast cancer on one side of my family (aunt and cousin).

I had neo-adjuvant TCHP chemotherapy, then due to my family history, I chose to have bilateral mastectomy (they did the reconstruction with implants at the same time) with axillary dissection (21 nodes removed - 2 found to still have some cancer cells upon pathology review of the tissue post surgery - no cancer cells found in my breasts at all). I am completing my year of Herceptin - will finish in October. And, I am having radiation of the axilla and breast on the effected side. I'll be starting Tamoxifen soon.

The most difficult/upsetting thing for me is how little the doctors can or will tell you about your risk of recurrence - especially for me I suppose - diagnosed young, triple positive and with an occult breast cancer. There's not much out there on that combination. So it's really, really scary for me. I tried to talk with my oncologist about it and was told that I should just go home, forget about it and live my life. I was told, "you're in remission, ok?" in a very harsh way. Alrighty then....

Anyway - I'm a mom, a wife and I work full time...so juggling life and this cancer merry-go-round has been very challenging. I'm looking forward to getting to mid-October. At that point I'll be done with all the major treatments and will be in follow-up mode + tamoxifen.

Anonymous wrote:I wish that this site functioned better as a place for a support group. I have seen nothing rude or nasty on it (yet).

Trudy I am about the same age as you, and about the same age that my mother first got breast cancer. She got it 3 times in total over a 15 year period.

And now she is 71 and still kicking ass, almost 10 years clear since the last round.

She said that chemo was like being shown death in such close proximity, that it nearly kills you in order to bring you back to life again. She also said that if it weren't for us children, she would have given into cancer, but she needed to be here for us.

I really believe that a strong fighting state of mind does help. In fact I've read reports which testify to this.

Sending good vibes, and love if you'll have it.

Wow, 3 times and she's doing well--that's encouraging, thanks! Yeah, the whole cut/poison/burn process is inhumane, but it increases the odds of survival, so it's what we do. I've got one more full week of radiation left, and I'm in bad shape--blisters, burning and peeling, pain, the whole shebang. I can't wait to come out on the other side. Spring can't get here soon enough!

What sort of screening have you done? Have you been tested for the BRCA gene?

I'll take all the good vibes and love you can muster.

~Trudy

Hi Trudy! I had symptoms. I was having some abdominal pains after eating. I'd also noticed a bit of blood in my stool (which I stupidly dismissed as post-pregnancy hemorrhoids). I was losing weight too, although I attributed that to breastfeeding. After 2 months or so of the stomach pains, I finally made an appt with a GI specialist, who recommended a colonoscopy. That was how they found it. There is no routine screening for colon cancer before age 50, so I'm very lucky that my doctor was proactive. Given the aggressiveness of my tumor, they've given me 50/50 odds that it will come back. What are the recurrence rates like for stage III breast cancer?

I did a poor job quoting, so here it is again:

I'm glad your doctor was proactive, but sorry that you have to deal with this at all.

Rates of recurrence for stage III BC range from 20-50% or greater, depending on disease stage, tumor grade, and treatment, etc. Because I'm triple positive, I have the benefit of Herceptin to treat the overexpression of the HER2 gene; however, I also have the HER2 gene causing my cells to grow and multiply, and my pathological staging put my tumor at grade 3 (poorly differentiated). Also, I had a large tumor (greater than 5 cm.). I've heard from a couple of doctors that my odds of recurring are as high as 70% in the first year (and that would put me immediately into stage IV BC), but after the first year, my odds improve. My cancer is aggressive, so if it recurs, it's likely to do so within a few years. If I can get to 3+ years without recurrence, I'm in good shape.

If your tumor comes back, what does that mean? Is it still treatable at that point?

~Trudy

Anonymous wrote:Hi, I'm a new poster. Just finished a rough few months. Diagnosed with Stage I invasive ductal carcinoma in October. Lumpectomy. 0/7 nodes positive. ER positive, Her2 negative. 5 days of radiation. 4 cycles of taxotere and cytoxan. I am 40 with 2 very young kids. Will start Tamoxifen in the next month. Fucking sucks. Best to you all.

Did you handle chemo okay? Any neuropathy? The Taxotere is awful. I've been lucky to have only a bit of soreness in my hands and feet, but I know it's tough on the entire body.

Are you concerned about Tamoxifen? I'm going to be starting Femara soon & am worried about the side effects, but I know hormonal therapy is necessary in an attempt to ward off recurrence.

Hugs to you!

~Trudy

Anonymous wrote:AMA OP here. I'm back in the hospital for a bad fall. After a CT, I'm now being told they see something so I'm waiting to see my oncologist. If it's a met, it would be a new one. I'm really hoping it isn't that.

It's one of those weird truths that you never really stop being afraid of cancer, even after you get it.

I'm sorry, AMA...how's it going? Please keep us posted. (((hugs)))

~Trudy