can anyone advise me cause im driving myself mad!!

was diagnosed with oc in 2008 after being assured for a year there was nothing wrong!!underwent full hysterectomy,removal of omentum and appendix.had 6 sessions of chemo and fab news is dec 2011 still had all clear.But every day i fear it is back,bad back,sore throat any thing and im panicking.My cousin has now been diagnosed with breast cancer and her consultant thinks there be a genetic link with ovarian cancer!!has any one any knowledge of this ?would so appreciate any help. mx

15 Replies

oldestnewest
  • Hi Mabel

    It's natural to be fearful, we all have a wobbly few days when we feel something is not right, but you've been given the all clear, so maybe you could try to enjoy your new life. Have you had any counselling since having OC? If not, maybe you could investigate that with your hospital. The specialist nurse should be able to put you in touch with someone. Or try Macmillan. Their survivorship programme has links to counsellors I think.

    There is a genetic link between OC and Breast C, but not in all cases. I took part in a trial a few years ago and mine wasn't genetically linked. If there is a genetic link, it's called the BRACA gene, or something like that! Someone else on here will be able to put me right if I got that wrong, I'm sure.

    I'm glad you came on here to ask your question! No-one needs to drive themselves mad with worry. If you have any more questions, the search box at the top of the page can often help, with old threads and conversations. There's loads of info on there. Just type in a couple of key words in the box.

    All the best

    Love Wendy xx

  • Hi Mabel,

    I was tested by the women's genetic clinic in Birmingham to see if my cancer was due to an alteration in one of the 2 genes they have so far identified as being related to ovarian cancer BRCA1 and BRCA2. These 2 genes are also involved in breast cancer and prostate cancer in males. My family had no real history of these cancers, but we tested anyway as PARP inhibitors are a new and powerful weapon against this strain of ovarian cancer and would have been a great treatment for me since chemo is not working.

    My results came back negative. It is either a chance cancer or due to another gene not yet identified.

    I think you can ask your GP or oncologist to ask you to be referred for testing to your local genetics clinic. They use blood samples and look at your biopsy blocks.

    Love Lizzie

    X

  • Hi Lizzie thankyou so much for your info and reply i will defo seek advice.Im really sorry your chemo isnt working,have you been under going treatment for long?mx

  • Hi Mabel,

    I had carboplatin/taxol from July-October 2011 and Caeylx from January-March 2012. None have been effective - I have refractory disease (does not respond to standard treatment).

    I think it is fairly rare to be so unlucky. I am having my histology checked of both my debulking and breast biopsies at the UCL in London, which I am hoping to hear the results of in the next week or so. I am not expecting much to come out of it, but it's worth a try to see if they spot something.

    Love Lizzie

    X

  • morning lizzie,words fail me(which is very rare),

    I hope you have plenty of friends and family nearby to support you and go with you.

    I will be thinking of you next week espeacially.

    Take care

    mx

  • Hi Mabel

    I am so sorry that you are going through this. As always Lizzie and Wendy have given brilliant advice. There is so much cancer about these days that it's in every family unfortunately.

    It is also perfectly natural to worry from time to time , but if that is interfering with things it's a pity as you have done so well.

    I can totally relate to how you feel about letting your guard down with another person though. I work for the health service and felt that I really wanted to limit the number of people I would run into in the coridoor or be sitting opposite me at a meeting who knew my personal "stuff". So I did two courses of computerised CBT which were absolutely brilliant. "Living life to the full" is free online and was brilliant. I have just found a mindfullness course where you can download lovely relaxing meditation type exercises to be really good for me. I have all four on my phone and can do them sitting in the garden. This cost about £40 but was well worth it.

    Love

    Charlie xxx

  • Dear charlie,thanks so much for your advice,will certainly look into "living life to the full" I know I need to take positive action,espeacially after reading so many different cases on this site.Everyone is so inspiring and positive.Ifeel quite ashamed to feel how i do to be honest.

    hopefully we can chat again mx

  • Dear Mabel,

    I've just had genetic testing for the BRAC1 and 2 genetic abnormalities. They do it where there are direct family members who have prostrate, breast or ovarian cancer, for instance mother, father, sister, brother, which is the case in my family though my GP said it would be rare for me to be more than a carrier as I've developed the cancer later in life. It's worth checking with your own GP as to the people your local centre test.

    I'm glad you've found us as there will be plenty of inspiration from the ladies on the site and it's a great help. I didn't have any symptoms at all last year and the diagnosis was coincidental but revealed the disease was too far advanced to be too hopeful of a long remission.

    I too don't feel comfortable with counsellors. I also get worries most days that I have a niggling twinge here or there, don't feel hungry, or feel tired. I depend on CA125 tests at regular check ups. Generally my coping mechanism is to distract myself by doing things I enjoy and when I look in the mirror if I look fit and well I convince myself that the outward manifestation is an accurate reflection of my inner world. I'm not sure there are any better solutions but I would love to hear from anyone who has.

    Keep us posted as to how you feel. It will help you. You are among friends. Xx Annie

  • Hi Mabel

    So glad to hear you are in remission following your cancer. I know how worrying it is though. I found out I had the BRCA1 genetic mutation after I was diagnosed with ovarian cancer.

    Although most cancers are not hereditary, changes in two genes - called BRCA1 and BRCA2 - increase the risk of ovarian and breast cancer. These genetic mutations run in families and members of the family who inherit the gene have an increased risk of these cancers.

    If you or any family member has had:

    ~ ovarian or fallopian tube cancer at any age

    ~ breast cancer at age 50 or younger

    ~ breast cancer in both breasts at any age

    ~ both breast and ovarian cancer

    ~ male breast cancer

    and if more than one family member on the same side of the family has had any of these cancers:

    ~ breast cancer

    ~ ovarian or fallopian tube cancer

    ~ prostate cancer

    ~ pancreatic cancer

    then you should consider genetic testing and see a counsellor.

    Macmillan have a useful tool called OPERA on their website. macmillan.org.uk/Cancerinfo... OPERA is an online information tool for people concerned about their inherited risk of breast and/or ovarian cancer.

    I also found the following website very useful facingourrisk.org. In fact I am now setting up as an Outreach Coordinator for FORCE (Facing OUr Risk Of Cancer Empowered) in this area (Essex, UK). If I can help in any way at all please contact me.

    Best wishes

    Sharon

  • hi sharon thankyou so much for all the info im so grateful.How long ago was your diagnosis you look so young in your photo.I was diagnosed at 40.Wished i lived in essex as what your doing sounds amazing,i live in hampshire although my best friend lives in hutton and i do visit her,so maybe we might meet one day.Iwill certainly keep in touch,thanks again mx

  • Hi Mabel

    No problem - glad I can help. I was diagnosed with ovarian cancer three years ago at 48. Halfway through my chemo traetment I found out about the BRCA gene and was tested. I tested positive and decided to have a double mastectomy as soon as I could to reduce my risk of breast cancer. I had that in Jan 2010 and then my ovarian cancer returned in the June. More surgery and chemo. In remission again until December 2011. I chose not to have chemo this time and am on a new drug that is particulary effective for BRCA cancer and doesn't have the awful side effects of normal chemo.

    Best wishes to you

    Sharon

  • Sharon youve been through so much,im so sorry.I was diagnosed with oc after a year of being reasurred everything was ok.Had my right ovary removed which had cyst,got called back to be told i had a borderline tumour,it wasnt cancer and a full hysterectomy would be like a bib and braces to the situation.Met surgeon 2 weeks later to be told i had an aggressive cancer and would need chemo asap after.They removed my ommentum as well and said i had microscopic cells on my pelvic lining and went ahead with 6 lots of carbo/taxol.That finished in april 2009 and ive had 6 monthly scans since.Touch wood im still good I was clear at xmas,but now this gene woryy has come up with my cousin and ive been on estrogen only hrt since hysterectomy,so im worrying more than ever now.Youve been through so much more than me and im rambling on im sorry.mx

  • No problem. I am feeling very well now. My new treatment is great. You have had an awful time of it and I do think it helps to talk about it.If I can help or answer any questions please just ask.

  • thanks for that sharon and im really glad your feeling well mx

  • Yes there is a link and because of this I was told to have a mammogram every year instead of two yearly. Recently had a pet scan and was told that the mammary nodes are affected.? Just waiting for my mammagram results.

You may also like...