At sea with my diagnosis??

Ladyluckireland

hi , I am new to the site and still trying to navigate my way round it, so I hope I have come to the right discussion group . I was diagnosed with idc and Dcis in October 2014. My pathology said I was er/ pr positive, her 2 equivicol . My onc didn't want to take a chance on her 2 status so decided to treat me as her 2 positive . I had surgery in Nov glands taken 9 in total including sentinel nodes ... All clear . got infection post op , so while waitin for chemo to start I had a ct because I was complaining of a pain in my side . Ct showed mediastinal lymph node . Pet confirmed same plus showed met on my c7 . So befor I ever started chemo I was a stage 4 . Had tch 8 rounds and got remission even my c 7 resolved. I remained on herceptin and zometa . 10 weeks after chemo I also started tamoxifen . No idea why I wasn't put on it straight away.??? Anyhow after 22 weeks ct showed same lymph node as before increasing in size again and one spot on my liver . Then my onc tells me that although my pathology says I am er and pr positive my scores were very low indeed and now she feels that my cancer is behaving like triple negative . Yet she not confident enough to take me off herceptin and says she may well use tamoxifen again if I improve !!! My head is wrecked . So it seems nobody can tell me exactly what diagnosis I have . I thought pathology was categorical but with my low hormone scores and my equivicol her 2 status she says pathology looks iffy ?? The mediastinal node was also checked before I ever started tx and it was her 2 neg and er plus pr positive but only barely . I am now on gem carbo combo and it is wiping me out . Can anyone help me ? Has anyone else had this type of scenario. My onc is very good and top of her field so chances are she is right bout the TNBC . I just feel so lost . Am I the only one with such a confusing picture

sylviaexmouthuk

Hello Ladyluckireland

I have just read your post and I cannot believe all you have been through. It seems to me that before you were started on all these lethal chemotherapy drugs, you should have been given a definite receptor status and treated accordingly. With triple negative the chemotherapy drugs are much the same as for hormonal positive receptor status, and the standard ones are usually epirubicin or doxorubicin with cyclophosphamide and then a taxane such as paclitaxel or docetaxel and these taxanes are very effective in treating triple negative. Different chemotherapy drugs may have been used because you were then classed as stage 4.

Looking again at your details I see that you have written tch which I think must be one of the taxanes, plus cyclophosphamide and h must be Herceptin. The Herceptin which a monoclonal antibody drug and very nasty, according to what I have been told from patients receiving it, is of no use to HER2 negative patients.

The drug tamoxifen is of no use to patients who are triple negative, and, again, has nasty side effects.

I am not surprised you are not feeling good.

I do hope the gem carbo will help you. I do not know too much about these two.

I can understand how lost you must be feeling and how concerned that you have not had a definite diagnosis of your receptor status.

You say you have an excellent oncologist, who says you are TNBC. All I can say is that if I were in your shoes and going through all this confusion, I would want a second opinion.

You are quite welcome to join the thread I created sometime ago, Calling all triple negative breast cancer patients in the UK. We have people from all over the world and we have had several Irish ladies.

You might like to join a thread for stage 4 breast cancers. You will find these under active topics.

I do hope this helps and please come over to us if you think it will help. You could also have a look at Calling all TNs which is a big thread where you may find someone with similar problems with their treatment and confusion about receptor status.

Thinking of you.

Sylvia

sylviaexmouthuk

Hello again,

I have just read the other threads you created. You mentioned that you were taking Effexor. This is an anti-depressant.

All chemotherapy makes you very fatigued and you need to get plenty of rest and sleep.

Have you been checked to see how your red blood cells are doing? When these are low you tend to be anaemic and you may need some iron. You need to sort these things out with your oncologist.

I hope this helps.

Best wishes.

Sylvia

Ladyluckireland

thank you for gettin back to me it means a lot . Tch is taxotere carboplatin and herceptin . That's what I had . Because her 2 status is equivocal after being checked 3 times on my primary tumour and negative on the mediastinal lymph node the onc feels that there is still a chance I am positive and she is reluctant to take the leap and take me off it . All my pathology is like this I am hormone positive but only barely but because pathology says I am none the less still positive she again feels she can't just rule out the result . Yet she says that lookin at scores and based on her years of experience in bc care her feelin is I might truely be tripple negative although she has no categorical way of proving it . She sought advice from other oncologists on how to proceed and they said kerp the herceptin for now . As for my gem carbo regime so far I have managed to keep platelets up and my red B cells are also stable . Thank god . Fatigue is just unreal though. Can't lift my head off pillow for bout 5 days after each cycle . Not good with 4 kids under 11.!!!!! She prescribed Effexor cause I am feelin so low my bladder us sittin behind my eyeballs leaking from mornin to night . !!!!!I think my diagnosis or lack thereof is only hittin me now.thanks again for your support. Any and all other opinions welcome.

IrishPat

Hi Ladyluckireland,

A fellow Irish stage IV breast cancer patient here! Feel free to drop me a private message, we might live near each other.

I've heard something before about how breast cancer cells can "flip" and you can actually change from receptor positive to triple negative. It happened to the young lady in this blog: writtenoff.net. I wonder if this has happened you?