My Ovacome
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Here we go again, breast cancer link.

After being diagnosed with breast cancer aged 39, I now find myself newly diagnosed with ovarian cancer aged 49 which is a bit of a shock to say the least!

Very little family history of these types of cancer, but I have heard from medical professionals that I am at a higher risk of getting ovarian cancer with my history of breast cancer at such a young age, but I was never told this before now.

Just back at home recovering from a failed hysterectomy I am now facing 6 X cycles of chemotherapy and then more surgery. Feel so sorry for my poor hubby having to through my cancer treatment the first time was bad enough, but his support has been wonderful yet again.

Not looking forward to chemotherapy again, but at least I know what to expect, and it worked last time.

Is anyone else aware of the breast cancer link, and/or been made aware of it, or is this a recent development?

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Unfortunately women with BRCA1 or BRCA2 variants of the BRCA gene are at higher risk not only for breast cancer but also for ovarian cancer. As you have suffered both it might be worth asking about genetic testing to see if you have one of these variants, especially if you have daughters or sisters. Some treatments for ovarian cancer are thought to work particularly well for those with one of these gene variants, so it would be worth knowing for your own sake too.

I'm sorry you are having to face having cancer again and hope your treatment is successful.

Barbara

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Hi Maggi,

Welcome to our club that no one wants to join....yes I am aware of the link between the two but it is usually a "familial gene" that does this... and has already been suggested might be wise to get other members of the family tested...funny thing is... it is nearly always that way round...breast then ovaries.. and not so often ovaries and then breast...I am sorry you have to go through it all again and send you my best wishes love x G x

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Sorry typo error " MaggyH" xx

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Dear Maggy

I'm so sorry to hear all this. It must have been devastating to have this diagnosis and then it seems your surgery went wrong as well. I just wonder whether you could ask to be referred to a centre of excellence as the treatment you've received seems very worrying. There's another blog on Centres of Excellence which members report to be first class. You should look up a Question by Irene 'Review a Hospital' and there's an earlier Blog 'Which NHS Trust What Treatment?' which I posted up nearly a year ago and which lists a lot of hospitals and the treatments given.

What I would say is that from all I've been told an early incidence of breast cancer does increase the likelihood of ovarian cancer. They are linked. It may be that when you were diagnosed this wasn't known and somehow former patients slipped through the net in terms of being contacted and informed about this.

I think you would be wise to ask about genetic counselling to see if you have the BRCA gene which means you have a family propensity to developing breast, prostate or ovarian cancer. It's a simple blood test, you'd have a friendly meeting with the genetics team which can include other family members, and then they will give you the result after about 3 months. If you do carry the gene there is hope as there are therapies that work well - they're called PARP inhibitors. It's also good if you have children as they can make arrangements to reduce the likelihood of developing one of these cancers. There's a Support group organised by members of Ovacome. You can find out more about that on a blog called, 'BRCA Positive? Support Meeting in Essex UK'.

It may be you were just unlucky and this is a coincidence. My own sister developed cancer at the age of 27 - it was a melignoma. She went on to develop breast cancer in her thirties and in the last years has been diagnosed with Non-Hodgekinson's Lymphoma. I'm mentioning this in the most positive light as my sister is a picture of health and an example of how someone can live well with cancer.

I really wish you all the best with your chemotherapy. You're lucky to have such a wonderful husband who is such a support - but I know what you mean when you say you feel sorry for him going through all this again. I think it's really hard on those we're closest to.

I'm sure you'll get lots of other replies and help on this site. Make sure you keep on posting and let us know how you're getting on. We're here for you. xxxx Annie

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Hi MaggyH

I had ovarian cancer at 26/27 and breast cancer at 51, back in 1976 ovarian cancer was treated with ops and intensive radiotherapy and then at 51 I developed breast cancer which was treated with 4 chemos and radiotherapy. I asked for genetic testing but it never happened and I had enough to think about. My 2 daughters are adopted so they were not at risk froom my genes. I always wondered I may have had breast cancer because I took HRT for 25 years after ovarian cancer which was obviously in hindsight a huge risk. Anyway to me the second time was less traumatic psychologically as I knew you can survive these things. I have been enormously lucky and am stll here 11 years later. Wish you massive luck and love...maggieBx

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Hi MaggieB,

What an awful time you have had...was your Ovarian and Breast cancer the same or were they two separate cancers? (In your case three) thank you for being so encouraging best wishes x G x

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Hi Gwyn, I think they were too far apart...25 years...to be related and they were both primary cancers. I suppose I have had some really, really bad times but I don't regret any of it. I learned so much through the difficulties and Iam lucky enough now to have survived and can appreciate what I have had and what I have got. I consider myself a lucky woman.

My heart goes out to the women who can't rid this vile disease from their bodies, they are the people who have had and continue to have a hard, hard time. I think acceptance brings peace and it's own positivity but itis very dificult to accept and takes years to learn. Many women don't have the time, sadly.

Lots of love to you all maggieB

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Hi Maggyh, my heart goes out to you, this battle with cancer can be so daunting, we can turn to each other for support. I do protect my friends from my fears most of the time, which makes it a heavier burden, your dear husband is there for you although you must be sad for him lots of love and hugs Diane xxx

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Dear Maggyh

We are really sorry to hear that you are facing cancer treatment again and hope that the chemotherapy will be effective without too many side effects. If you would like to give us a ring and discuss this further please do feel free to do so 08453710554 Wed- Fri 10-5.

If someone is diagnosed at a young age with breast cancer there is a stronger likelihood that there may be a genetic link. It is also more likely if you have a strong family history of breast or ovarian cancer on one side of the family. Around 10% of cases of both breast cancer and ovarian are thought to have a genetic/inherited link. It is however an area of medicine that is changing very quickly and certainly what was said several years ago maybe different to what is said now. For instance around 20 years ago it wasn't known that the genetic link can be transmitted down the male side of the family. There is a group called FORCE which is a support group for those affected by breast and ovarian cancer which I can send you details about ( this is separate from Ovacome but we do have information about it) there is also a group called the national hereditary breast cancer helpline breastcancergenetics.co.uk.

As others have mentioned you might want to consider asking to be referred to a cancer geneticist at some point.

Best Wishes

Ruth

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Thank you all for your kind and useful comments, it means a lot to me to be able to contact people who have been through similar experiences and understand. I will continue to post reports of my progress.

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Hi MaggyH

So sorry to hear that you are having to deal with cancer again. I found out after I was diagnosed with ovarian cancer that there was a link with breast cancer and subsequently that I was BRCA 1 positive meaning that I had inherited a mutation that put me at higher risk of breast or ovarian cancer.

The BRCA genes were discovered in 1995 so relatively recently. To find out whether you have this genetic mutation, you will need to be referred to a genetic counsellor.

I am now an outreach coordinator for FORCE mentioned by Ruth above. FORCE (Facing our Risk of Cancer Empowered) exists to provide support, education, advocacy, awareness, and research specific to hereditary breast and ovarian cancer. See the website: facingourrisk.org or my page: facingourrisk.org/support/l...

I don't want to overwhelm you with too much information but if I can be of any help please let me know. I also run a support group that meets regularly.

If you do test positive for the BRCA gene it can open up opportunities for different treatment. I am currently on a parp inhibitor drug (under a trial) and am having an excellent response with barely any side effects.

Any questions, please ask.

Best wishes

Sharon

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I have now been referred to the clinical genetics team in Leeds, completed the forms and am waiting for an appointment. Thanks very much for the advice.

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