Just when you think you are getting ahead

Britbee · 03-08-2012, 07:50 PM

Back when I first learned I had cancer my oncologist told me I had HER2 type cancer and NO hormonal receptors. HER2+ ER 0/8 PR 0/8. I have this in writing by the oncologist's own hand. He also wrote down the steps I would have to take. 1. Surgery. 2 Chemotherapy. then he had 3 as hormonal therapy but crossed it through. 4 Radiation.
It seems now I am almost done chemo I am going to have to see a radiologist, at least hear what he has to say then decide what course of action to take.
When I went to the oncologist office today, after the usual preliminaries, his assistant says lets talk about hormonal therapy. I said I don't need it, she says yes you do you are PR 5/8. I said where did you get those numbers from, she said from a biopsy back in June 2011. I was so upset my son had to hold me down. Seriously???? When she realized I actually had no clue about the PR 5/8 stuff she says I have to talk to the oncologist myself in three weeks time and get this straightened out. REALLY!!. I thought cancer patients were not supposed to get stressed. I was already upset from two hospital visits this week, a urinary tract infection, and now this. Talk about knocking the wind out of my sails.
I was feeling really good, got through 5 chemotherapy sessions with the last one coming up tomorrow. Now this.
So who is at fault here?
The Oncologist? He was going by the results of the mastectomy, but still, did he not see these numbers in June after my biopsy? Or did he disregard them?
I know that with my next and last invasive chemotherapy being tomorrow I have to put this out of my mind for now. Nothing can be done about it till my next office visit. Getting through the next three weeks will be hard enough without dwelling on the fact that not only am I going to be having Herceptin for the next year but now they are talking 5 years of Tamoxifen also!!
Think I might have to spend the next three weeks in the fetal position IN BED!!

BonnieR · 03-08-2012, 09:01 PM

It seems to me that you might try to have the oncologist see you sooner, considering how upsetting this is to you.
But, looking at the other side of the situation, it is a very good thing that this was caught and is going to be addressed now. It would be much worse if it continued to be overlooked! Then you would REALLY feel bad! And, honestly, unless I am missing something here, having the extra insurance of an AI for 5 years is a good thing. It will be cake compared to surgery and chemo. So try to look at the bright side. Keep the faith.

ElaineM · 03-08-2012, 09:02 PM

Do not let this get you down !!!!!!!!! You are stronger than you think. Go and do something "fun" during the weekend. Perhaps there is something you have wanted to do for awhile and were not able to do or someplace you have been wanting to go for awhile. Go and enjoy yourself. Everyone deserves a "cancer break" once in awhile.
Perhaps the oncologist had a piece of information from the period after June 2011 that helped him make the decision he made. Don't worry about the assistant. Assistants make mistakes. Your oncologist will help straighten things out soon.
Hang in there. Keep putting one foot in front of the other, keep going and stay positive.

Britbee · 03-08-2012, 09:17 PM

Thanks Bonnie and Elaine, I usually try to stay positive but this came out of left field. You are both right as always, that is why I always come back here. Now that the initial shock has worn off I will continue on and fight the good fight

PinkGirl · 03-08-2012, 10:59 PM

Are you ER positive or PR positive???

Jackie07 · 03-08-2012, 11:47 PM

Britbee,

I had exactly the same thing happen to me after I finished my radiation therapy!

My oncologist had told me clearly at the beginning that the tumor was not hormone positive, thus I couldn not use hormone therapy. When several docoters (not him) I saw at the end of my chemo/radiation mentioned about starting me on Tamoxifen, I thought they were crazy! (Especially the first one who had told me about it.)

But then I began to wonder why everyone was talking about taking Tamoxifen. So I called the medical oncologist's office and then got a confirmation that I did need to take Tamoxifen as the tumor had a 2 % Er + feature. New research has confirmed that women with low percentage Er+ breast cancer still benefit from taking Tamoxifen.

Later I learned that it's actually good to have the receptors. I guess it's just like Her2+++ breast cancer - it was a bad diagnosis when it did not respond to chemotherapy. But it is a better diagnosis now because there's antidote such as Herceptin/Tykerb/...

Yet I understand your frustration. Just when we think we've done what we are supposed to do, something new is thrown at us again!

Ellie F · 03-09-2012, 05:38 AM

Hi Same question as pink girl. Are you ER+ or PR+?? My understanding is tamoxifen is for ER+ disease.

Ellie

Britbee · 03-09-2012, 07:03 AM

Wow I am so glad I posted. You ladies are magnificent. Thanks so much for all your replies. I was told yesterday I am ER 0/8 PR 5/8. Why they sat on this for 9 months without a word I have no clue. When my oncologist mapped out my treatment he was going by the mastectomy results which are posted in my sig. He actually crossed out hormone treatment as not being necessary. So if you are saying it is for ER???? I am even more confused but smiling because I have all you ladies at my back. Love you all!!!!!

BonnieR · 03-09-2012, 01:39 PM

I had the same question and was confused about the ER/PR aspect. I did some research and it seems that if either is positive the patient is considered "hormone receptive positive" and is treated with the same meds. You learn something every day around here. I hope my findings are accurate and someone more brainy will come along and correct me, if needed.
Keep the faith.

PinkGirl · 03-10-2012, 07:25 AM

Not trying to confuse you Britbee ... I asked about your status because we usually associate hormone therapy with estrogen not progesterone ... but as Bonnie said, you are considered 'postive' for either ER or PR ... news to me.

I'm glad I'm receptor positive because it gave me another weapon to fight the beastie ...

It's possible that your PR status wasn't mentioned because ER is considered the 'biggie' ...