Positive Brca one result

[TinaWright]

Hi ladies, recently we were chatting about brca one and two gene mutations. It appears that lots of us have been tested positive for this, as so was I last year.

The genetics team were marvelous they explained it all to me until I felt like the expert however, now I am terribly confussed. The gentic team referred me to the breast clinic in Addenbrookes hospital last year. I had a mamogram and some dodgy looking cells were found in the right breast. These were drilled out and turned out to be nothing to worry about. At first I was put on a drug called anastrozole???? I think, its a sister drug to tamoxifen.

Then 1 1/2 weeka later I was taken off the drug and informed I didn`t need it.

I never questioned why.

Now, recently a friend who is training in oncology at Addenbrookes hospital told me that tamoxifen and similar drugs are offered to high risk breast cancer patients (brca positive patients). I talked this through with my oncologist and she started to investiagte for me.

I have recieved a copy letter that she has sent to my GP and in this letter it states that according to the breast clinic I have no higher risk of breast cancer than the general population.

Thankfully, I do have my next appointment at the breast clinic next week but I feel so anxious waiting.

Also the breast clinic locom who I saw a year ago told me I had a second primary cancer of clear cell in my uterus and because of this they didn`t feel that it was safe to keep me on the breast risk reducing drug.

I queried this with my oncologist last week and she said this was not the case at all. I had mixed cell type in my ovarian tumour, one of them being endometrioid.

But I am still very confussed about my breast cancer risks - checking back on my letter from genology the risks are high and they are life time risks.

Next week won`t come soon enough let me tell you, few rant over from a very frustrated Tina xxxxx

[Hidden]

Hi Tina,

Confusing? Yes.... I am so sorry this must be such a worry and takes away any confidence you might have had, would it help to give Ruth a ring? I am not well up on brac so I am not much help, there are other people who are familiar with it I hope they can offer you some support. Sending you my best wishes love x G x

[Whippit]

Dear Tina, What a horrible situation to be in with one party saying one thing and another something else. It makes you wonder who you can trust. In my case I'd go back to the GP as they can take an overview of all your conditions rather than being seen by very specialist staff who are so busy looking at one body part they don't seem to see the big picture at all.

I do hope you get this sorted out very soon and can post up some good positive news one way or another.

Take care. Rant whenever you feel like it as we're all sympathetic to you going through such a confusing and worrying time.

Love Annie xxx

[TinaWright]

Thank you Gwen and Annie,

I decided the best persons to speak to would be my genetic counsellor, she was appalled. All we can say is I am at least able to discuss this further with the breast clinic when I attend a week on Thursday.I will then report back to genetics.

In the meant time I am feeling rather frustrated and a bit cross to be honest because I have sure lost a great deal of confidence in the breast clinic however, I do think this could all be down to one crazy locom breast consultant. who even got my diagnosis wrong.

I have therefore just copied two letters to my oncologist along with my own letter so she can be well and truly put in the picture about what is going on here.

I have also been advised to take the matter further by contacting pals - which I may still do depending on the outcome next week. Its not that I`d be complaining just offering feedback on the circumstances.

I decided not to bother the GP at this stage because the only information she has is the same as my copy letters.

Thanks for your lovely support dear friends.

Loadsa love from Tina xxxxxx

[wendydee]

Hi Tina! I can only say that it's awful that systems in the hospital seem to be very mixed up. I think that happens in different depts, even within the same hospital. It's just not right. I would go via the PALS route. They may be able to act on your behalf. I agree that the GP will ony have info that has been sent. I just wanted to send my love and say 'Hang on in there' it will all become clearer, I am sure. You are always so supportive to others who are going through worries. What would you say to them? Ring Ruth, keep calm, stay positive and have faith...one poor link in a team doesn't mean the team are bad. I am sure you'll get your answers.

Love Wendy xx

[TinaWright in reply to wendydee]

Thank you wendy, I know I know I ask myself that question time and time again - I am not always good at taking my own advice but I am trying bless you thanks xxx

[sharonforce]

Hi Tina

I am so glad you spoke to your genetic counsellor and I hope you got the information you needed.

I had a similar experience with my youngest daughter who has recently tested BRCA positive. She went for an appointment with the breast care nurse at our local hospital who informed her that she needn't worry until she was over 40 and had had her family which was TOTALLY incorrect! Fortunately I went to the appointment with her and was able to inform her. It is terribly worrying that patients are being given misinformation. If they do NOT know the facts about hereditary breast and ovarian cancer they should not give out advice. I have since spoken to the Breast Care Unit but reading above I think I should contact PALS as well. I know several young BRCA-positive girls with breast cancer so it is irresponsible to say wait until you are 40. There are options to reduce your risk. My eldest daughter had a double mastectomy at 26 and is chosing to have children via PGD so that she doesn't pass on the faulty BRCA mutation and can have a baby free of this particular cancer gene.

I am an Outreach Coordinator for Facing Our Risk of Cancer Empowered for anyone affected by hereditary ovarian and breast cancer so if you have any questions that I can help with please ask.

The Royal Marsden Hopsital have produced a very useful booklet on BRCA that is also available online: A Beginner’s Guide to BRCA1 and BRCA2 royalmarsden.nhs.uk/consult...

Best wishes

Sharon

[TinaWright]

Thanks Sharon so much,

Now I am clueless wether I should be taking Tamoxifen or something similar or not so this is my real concern.

My youngest daughter has not been offered breast MRI`s until she reaches the age of 30. Older daughter who is 32 has already had her first MRI, very quickly after the diagnosis of positive brca one. Both daughters hope to extend their family of one child to 2 but neither will even consider the surgary. I do feel that they both assume they are safe until they reach nearer my age (I am now 54). Also because we don`t actually have any history of breast cancer in the family at all, they may not be as concerned as I am.

Everything has been explained but you know how some young people can be, they get this idea that they have TIME on their side.

The only way I can reach them is by telling them about every story I hear about another young woman with either breast or ovarian cancer.

Your daughter is very brave and sensible - that would have been me had I been given that chance.

Thanks again love from Tina x