Intro and what next?

Hi all,

I was diagnosed with TNBC in May 2009. I was 38 years old at the time. I was borderline on HER2, but they did do the FISH test to confirm the tumor was negative for HER2.  I received the diagnosis after having a lumpectomy. I had been breastfeeding up until about a week before the lumpectomy surgery, and my surgeon was uncomfortable removing lymph nodes at the time because she did not want to deal with the possibility of milk leaking into the wounds and infection, etc... (I have the initial path report for the lumpectomy but I can't recall the details and I can dig it up if it would provide a clearer picture of what is going on)

I began chemo very soon after - four Adriamycin/Cytoxan followed by four Taxol treatments, given every two weeks.

I opted for a bilateral mastectomy in October 2009. I also had 13 lymph nodes removed. The path report for this surgery found no malignancies - normal tissue in the left breast, no margins in the right and no signs of tumors, and no signs of malignancy in the lymph nodes.

However, due to my age and type of tumor, my oncologist and 3 radiation oncologists strongly suggested radiation therapy. I completed 25 doses on Dec 23.  So I am done with treatment. I have not had any follow-up scans at this time. My oncologist said she would order some up if I want (but I hesitate because I already feel like I glow in the dark!).

I have been reading this forum for quite a while since I was diagnosed, and in fact, this forum is part of the reason I decided to go ahead with the mastectomy and the radiation therapy. I feel like I have done everything I possibly can do... I am taking vitamins, eating much better, I still haven't done lots of exercise because I'm still pretty worn out. I am feeling like the emotional part of this is just now hitting me, and it is draining. My husband asked me today when will I ever start feeling better, and I just don't know! I feel like I've done pretty well with everything, considering that I have a full time job and a two year old! I also feel like my doctors have run out of stuff to do to me (I told them, "so, you've poisoned, stabbed and burned me, what's next?" and the rad onc says "maybe we can put you on the rack! how about leeches?").

Of course, I'm terribly worried about recurrence, and I'm also worried about the last CBC report I got. I have never gotten the whole report before - I saw my regular onc at a different office, and I had to have my port flushed, so they also took blood and made me wait for the report. My WBC is 3.4, LYM is 0.5, (both are marked as "low" on the report), and what is worrisome to me is that the RDW is high at 15.5, and when I look up high RDW, I start finding things about liver problems. Can anyone help me interpret this?

Is there anything else I should be doing? Besides to stop worrying?! (we also talked about seeking counseling or taking more Xanax or other antidepressants). I am driving my husband nuts, so I thought I'd seek out some others who are going through this too.

Thanks!

Mishka,

Congratulations on finishing your treatment!  We all fear recurrence, but you should find comfort in knowing you've done everything possible.  It takes time to get your energy back.  You've been through so much, so take it easy and don't push yourself too hard or too fast.

Dear Mishka,

Hello Mishka,

Also How do I put the stuff on the bottom of posts like what I have had done and stage and things like that?

Hi Amy,

I don't know if it's really right to say that TNBC is the worst. Today it's the worst because they haven't found a reliable treatment for it. It really seems to be more than one type all lumped together under one name because they don't even know how to differentiate between the types. Different chemos work for different people and there's really no way to know which type will work for who before trying them.

It used to be that HER2+ was the worst, but now they have a treatment for that that works pretty well, so now it's not the worst.

Maybe in a few years TNBC might not be the worst any more.

It's just that before there was, "breast cancer" and they treated everyone the same. Then they found something that works really well for some and they did some research and tests and discovered how to put all those that the treatment works for into a category and they called that ER+. Then they found another drug that works for a few more breast cancers patients and after the same process they figured out how to detect those and they called them PR+. Again it happened and now there's HER2+ and TNBC are all the leftovers who they don't know what to do with yet.

But they're working on it and they're figuring things out fast. Right now there are a few PARP inhibitors that are in clinical trials and there are several other targeted drugs that are still in the animal testing phase and a few others that will soon be in clinical trials.

Since everyone here is in the same boat or knows someone who is, we're all looking for the same information and together we end up finding out everything there is to know. But there's a lot, and it takes time to learn all this stuff.

Terje