Percentages, Angry and Frustrated

Hi
This is the first time I have been on this site. I have recently been for genetic testing and feel very angry that all I got was percentages. They couldn’t test me for the Brac genes as I dont have a family member that is alive and has cancer. My mum, grandmother and great grandmother died of ovarian cancer. I had a hysterectomy at the age of 28 because of ovarian cysts and the high risk of me having ovarian cancer. When I had the meeting for the genetic testing I was given the percentages of 25% to 30% of risk of breast cancer. I asked to talk about the posibilities of double masectomy and was told I would be refered to the surgeon who would also talk to me about me now being able to have yearly mamagrams until I am 50 (now aged 42). I have now had a letter saying that due to my mum’s cancer type she probably had the Braca1 gene and this gives me a 40% chance of carrying the gene. If I do have the gene my percentage risk rises to 80% chance of breast cancer. If I don’t have the gene it goes to 10%. The letter also told me that there is very little chance of me being able to have the masectomy as the evidence that I have the gene is not clear. On Saturday I watched a program on breast cancer where the presenter had mamagram, MRI Scan and the gene test. The results were back in 8 weeks. I am angry that I have all of these percentages to way up, very little option of having a masectomy and can’t be tested to help me make a decision. Sorry to rant, it seems unfair when there are many women in far worse positions to me but I just needed to let my frustrations out. Is anyone els facing the same situation that can relate to how I am feeling and help me put it in to prespective?

Hi,

I can sense your frustration and anger and understand you needing to rant and let off steam! I hope you feel a little better for it. Unfortunately there isn’t a lot I can say to make you feel better, you’re caught between a rock and a hard place. All genetics can do is give you percentages and even then these are not concrete percentages as risk factors depend on the type of mutation you have. Even if your mum had a mutation of a BRCa gene then its by no means certain that you do. Some high risk women without testing positive for a mutation have had preventative surgery and if this is something that you really feel strongly about then perhaps you should pursue this avenue further and push for a second opinion. I feel genetics really have given you all the info that they can at this stage and even that is ‘what if’s’, and ‘maybe’s’, they really can’t do much more without identifying a mutation and that isn’t going to happen because you can’t be tested. Am I right in thinking you have had your ovaries removed when you had the hysterectomy? If so are you taking HRT? If you are then you should think about discussing with your GP the implications of taking it in light of the fact you may be high risk for bc. If your not taking HRT then I hope you’re being offered supplements to protect against osteoporosis, 28 is very young to lose your ovaries. If you still have your ovaries then I strongly suggest you request ovarian screening which is very effective.
I think the documentary you refer to is the one about Gail Porter. Yes she had all manner of tests and got the results back in a blink of an eye. Sadly that isn’t real life, us lesser mortals have to wait months if not years. if Gail Porter wasn’t Gail Porter and making a docuumentary then rest assurred she would be slogging it out just like the rest of us!

I hope I’ve helped just a little… best wishes x

Helen, it was Dawn Porter, rather than Gail.

ScubaSal, I am not sure what you were expecting them to tell you after these tests? There are no guarantees in life, there are only chances and probabilities. Is it that you are frustrated that you could only be told it is between a 10-80% chance? Or that you don’t feel you are being offered all the preventative options?

It sounds like you might need to go back and ask to discuss it with them again once you have had a bit more time to try and make sense of what they have told you so far, re-ask some questions and push some points on the things you feel most strongly about.

Wishing you well. xxx

Hi, I have a strong family history but I don’t have either BRCA mutation. My Mum died of ovarian cancer last year, 2 weeks after diagnosis and I was diagnosed with breast cancer and secondaries 6 years ago. I have breast and ovarian cancer on both sides of my family. My sister was able to have an oophorectomy on the NHS last year and has yearly mammograms. My daughter will also have early mammograms and ovarian screening when she’s older.
All we all get are percentages, not easy to live with I know. It does sound as though genetics have given you all the info they have available. My results took a year to come through which I understand is quite quick compared to others. Take Care…x

Hello Scubasal

Forgive me here if I sound blunt but are you keen to have a mastectomy or have I misunderstood?

I have a family history of ovarian cancer and was diagnosed with bc 6 weeks ago aged 32. I was speaking to my specialist this week and mentioned that I might want my ovaries removed at some point if I have a high risk of getting ovarian cancer. He said they could in theory remove both breasts and my ovaries to ensure I didn’t get either but would I want that. My answer was that for me personally I would rather have my ovaries out at some point during treatment as it seems that with ovarian cancer you don’t get symptoms until it’s too late. However I don’t want a mastectomy unless I NEED to have one as it is much easier to tell if you have a lump and much easier to treat (I’m not making light of the seriousness of cancer here but it isn’t always a death sentence, especially if you find it early). I can check myself on a regular basis without having to undergo major surgery unless I really need it.

Of course we are all different and want different things. I’m just worried that you might think it’s easier than it really is to have a mastectomy - it really is major surgery. Please make sure you know what you’re getting yourself into.

I hope you get to where you want to be.

Faye

Thank you for all of your comments. My anger and frustration have now gone. I went to see the surgeon and he immediatley agreed that with my family history I should have the double masectomy. I should be having the op in spring next year. The point I was trying to get across in relation to the Dawn Porter TV programme was that we should all have the same rights to be tested for the genes. It can obviously be done if you have a living relative with cancer or not. I was even told that I could have the test in America if I could pay 3000. The genetisist did not do all that they could do, they are limited by funding and this is the only issue with why they could not do a blood test that would tell me if I have the gene. Dawns TV program evidences also this.
With regards to already making my mind up to having the double masectomy I feel that I have no choice. I gave up my need to give birth because I knew that my mum did not want me to possibly die of cancer from a gene that she may of given me. If I don’t have the operation that may of been for nothing and I will be ignoring what I know to be one of her last wishes. I konw I can get through the major surgery because I will always have my mum there for me.

Thank you again for your comments.

Sally

All the best Sally…yes your Mum will always be with you…xx

I believe there is new thinking about the advisability of having a double mastectomy to avoid breast cancer. The alternative theory is that the mastectomy doesn’t stop you getting breast cancer; it just appears on the chest wall instead, behind the reconstructed breasts where it is more difficult to spot.It sounds plausible to me but I’d hate to be the one having to choose which theory to believe.

All I can say is,ask lots and lots of questions and do a lot of internet surfing to see if you can find out more, before making a final decision.

Best wishes what ever you decide to do.

Yes it’s always percentages and risk and learning to live with risk BUT as far as testing goes ask about research projects as sometimes you can get BRCA testing done that way (I did though my circumstances were a bit different) Persist if it matters to you, keep on asking. It may also be worth contacting a macmillan counsellor as they know where you’re at and likely to help you sort out just what you want to do.