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Help and advice

3 REPLIES 3

Re: Help and advice

Hello Ian,
Ive had triple negative breast cancer twice, but won't post about me. I know its a huge shock to get your head round and it must be especially hard for you and your wife after 17 years.
I wanted to point out the positives in your wife's diagnosis. Its great that the tumour was found early, is small and there is no spread. You mention that the receptor tests were negative and your post sounds as if you were told this at the time, essentially this is the same as triple negative. I mention this as 'triple negative' can come with a high-loading of fear which is not helpful at a time when you are already stressed. My oncologist told me not to look up triple negative breast cancer when I was first diagnosed, and I am glad I didn't. It was only later when I realised its link with genetic mutations (I have a brca1) mutation when I began researching. Triple negative breast cancers are often very responsive to chemo which is why its a good idea to have it and sooner. In my experience, the sooner you start the sooner its over.
It sounds as though your wife has other health issues, but I started chemo only 4 weeks after surgery and I too had had some complications so I hope this reassures you not to be overly alarmed by the push to get on with it.
I have just started reading a book called 'Surviving Triple negative Breast Cancer' which is the first book I have come across to explain it. Its by someone called Patricia Prijatel. Its American and I have not yet finished it but mention it incase you are interested and there are lots of women who are featured as case studies who have survived.
Please post any other questions.
Do take care and others have said, phone the helpline. There is a lot of support out there - do use it.
Rattles

Re: Help and advice

Hello Ian

Sorry to hear you're wife has had such a hard time of things but good on you for coming onto the Forum to try to help.

I'm triple negative and was 46 at the time of diagnosis. I ended up having a mastectomy, FEC-T chemo and radiotherapy, but my cancer was quite aggressive and had been on the move.

I looked at the NICE guidelines just to get an idea of what treatment I should have been having and the recommended timescales. Just be careful of Googling for info about TN, much of it is out of date or not reliable and can be quite scary.

As you've probably realised, there aren't any follow-up treatments like Tamoxifen or Herceptin because it doesn't have the hormone receptors etc. So it does become a bit worrying once treatment finishes but then as time goes on the risk of recurrence lessens. There was a drug trial being undertaken, I think it's called the REACT trial, which has been ongoing for a few years but I think they've stopped recruiting for that now (I was asked to take part but then couldn't because of an allergy to aspirin). Unfortunately, the results won't be out for some years yet though.

As June says, it's a good idea to call the Helpline - they're amazing and I'm sure they'll make you feel much better about things.

Hopefully there'll be some other TNs along with advice.

Take care, and best wishes to your wife.
X

Re: Help and advice

Hello Ian59


Welcome to the forums. I'm sorry to hear of your wife's diagnosis, the first few weeks are always difficult when coming to terms with a diagnosis and treatment.
As well as the support you and your wife will receive on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...


You or your wife may also like to talk things through with one of the helpline staff, they are there to offer emotional support as well as provide information. The free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.


Best wishes


June, moderator

Guest user
Not applicable

Help and advice

I'm hoping someone can give me help with my wife's recent diagnosis of TNBC. I'm writing this because my wife has just started chemo. She is 62 and was diagnosed with a tumour 9 weeks ago as a result of a routine mammogram. This was the second cancer in that breast. She had one 17 years ago (lumpectomy + radiotherapy, grade 2, node negative). She had a mastectomy 6 weeks ago together with a sentinel node biopsy. The results showed that the tumour was small-1cm, grade 3 with no spread. All three receptor tests were negative. At the meeting with the consultant surgeon we were told that the oncologists were recommending chemo on the basis that this was the second time she'd had bc and the high grade. No mention of TNBC.
The first oncology appt was not with a consultant. Despite questions from us still no mention of TNBC. My wife asked for the first cycle to be postponed a couple of weeks to give her more time to recover from surgery. We were called to a difficult meeting with the consultant 4 days before chemo was due to start. And what a "difficult" meeting! The consultant didn't want chemo postponed and it was only at that meeting that she gave us the TNBC diagnosis! It's also complicated because my wife was diagnosed 9 years ago with a ocular melanoma. There is now evidence of a link between ocular melanomas and types of TNBC so she's suggesting genetic testing (we have 2 daughters and 2 granddaughters). We are still in shock from the new news on top of the shock of the initial diagnosis. My wife has just started 6 cycles of FEC.
We feel that we are on the back foot, trying to catch up with the diagnosis and find out what we need to know about TNBC. I've done the basic research on TNBC and looked at the American sites and some research literature. Although the pathology looks "good" we realise that TNBC doesn't follow normal rules. Also the poor communication about the diagnosis means we've not been able to explore treatment options in this country. We have a meeting next week with the consultant. Any advice about what we should be asking?