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Original poster

OVARIAN CANCER

45 replies

JanH · 01/03/2006 11:20

From the \link{http://www.ovarian.org.uk/\Ovarian Cancer Action} website:

March is ovarian cancer awareness month

Ovarian cancer is the 4th most common cancer, and ‘until there’s a test, awareness is best’. Women should look out for persistent, frequent and sudden onset symptoms including:

Abdominal swelling

Bloating

Urinary urgency

Unexplained abdominal or back pain

Change in bowel habits

Fatigue

Unexplained weight loss or weight gain

abnormal vaginal bleeding

Do get yourself checked by your doctor, for symptoms that start suddenly and occur very frequently. Don’t be afraid to ask about ovarian cancer. Our recent survey of GP’s showed overwhelming that they would rather you did, if you are concerned. It might also help to keep a symptoms diary to help your GP assess the cause. Women with two or more close relatives with breast and/or ovarian cancer on the same side of the family may be at an increased risk of the disease, and should discuss this with their doctor.

OP posts:
prettybird · 02/03/2006 11:04

Tamum - I'd forgotten you were a geneticist.

A particularly nasty breast/ovarion cancer gene has been identified in my family. it's decimated whole chunks of my father's side - and he recently got a letter from his cousin with a trnalsation of la letter from a Danish geneticsit, identifying the gene involved.

These particular cancers ususally hit in 50s, and ss my granny lived to 89 (and died of natural causes) and my aunt is 65, we beleive that granny wasn't a carrier.

Dad has been for testing to see if he is a carrier - the results are back and he has an appointment in 2 weeks to discuss them. Having been relaxed about it, I've now got very twitchy about "what if granny was a carrier - may be she was just lucky that she didn't succumb to the 80% probability". It's not one that affects men, so if she was a carrier, then she could have passed it on to dad and he could have passed it on to me :(

Unfortunatley, my aunt lives in South Africa, so she is going to have to pay to get herself tested. At least they know which gene to look for.

My father's family is very interested in genealogy, so they must be a gold mine for geneticists to understand penetration: I think they have traced it back to my great great granny so far, as it is her descendents who have been affected (and it was interesting, when dad called his siter, she was able to idenfiy a whole other batch of realtives in South Africa, also cousins, who had had breast or ovarioan cancer).

I know the probability is low, but it still scary waiting.

Eggie · 02/03/2006 11:27

Janh, so glad to hear you have had the all clear. Its great to hear good news.
I was diagnosed at 14 wks pg so my poor Dd has been through it all but like a little miracle she is the healthiest happiest angel ever.

kreamkrackers · 02/03/2006 12:41

my friend had cancerous overies when she was 11 and had them both removed. she recovered well but it really shocked me that at such a young age she had to deal with the fact that she could never have her own children :( i know there are other ways but it was something that was really hard for her to deal with. she had to inject herself with hormones as well as she wasn't developing a woman's figure. i'm so glad they picked it up in time for her as it must be a very unusual case.

tamum · 02/03/2006 17:54

prettybird, I'm so sorry, what a worry for you. What is the gene, do you know? I guess the 80% figure is going to include a lot of people who died before the cancer could manifest itself, so I would have thought that reaching 89 without succumbing was a pretty good indication of non-carrier status, but I suppose you just never know. It's good that your dad has been able to be tested, and I'm sure they must be very interested in your family tree, it's bound to be useful information, but what a shame you are having to go through this. Do let me know how it goes, and of course if there's anything I can do to help, just say the word.

Marina, I'm so pleased- didn't want to keep bugging you, but that's great :)

Marina · 02/03/2006 17:56
tamum · 02/03/2006 18:00

Mmmm, look forward to it. Poor you though.

prettybird · 03/03/2006 08:48

I'd need to see the letter again to see what gene it is - I just remember lots of letters and numerals!

I know Dad talked to Mike Connor, a Professor in Genetics, who is a freind of ours, before ringing our GP to go through the process "properly" and he was very reassuring.

At least I may be able to "miss out" on the tsting if Dad is not a carrier: my aunt still has to go through it, becaseu my granny died two years ago, so we can't test the "source".

Original poster
JanH · 03/03/2006 09:10

Eggie, how did you get on with the surgeon and breast care nurse? Are they going to refer you?

Amazing to think that you went through 6 months of pregnancy after diagnosis - that must have been so worrying - she will be very precious Smile

OP posts:
Eggie · 04/03/2006 18:25

Hi JanH. I was originally going to the hosp about my reconstruction so when I asked them about this they basically said to take one step at a time and said that we could discuss ovaries etc in the near future.Just me having a panic again I guess. Anyway Thanks for asking. x

flowers114 · 09/03/2006 23:26

THANK YOU VERY MUCH
for your advice
MY MUM DIED WHEN SHE WAS 58 YEAR OLD OF OVARIAN CANCER
so this make me more aware now
THANK YOU VERY MUCH JANH [SMILE]

jampots · 09/03/2006 23:34

thanks Jan for the thread.

Also Shock didnt know you had breast cancer but well done for getting through it :)

prettybird · 17/03/2006 09:33

Found out last night that my dad has been given the cal clear - so there's no chance I can have the gene. :)

My aunt still needs to pay for her testing though, as my granny could have been a carrier. :(

fransmom · 20/04/2006 21:56

prettybird, i'm sorry i haven't asked for ages, how is your aunt? my mom died of o.c. so i know how hard it is. i hope you're ok. (((hugs)))from fm x

prettybird · 21/04/2006 13:24

My dad says that he thinks she has decided not to be tested: she is already 66 and it is probable that she is indeed clear - and it is not as if they would do anything anyway.

If she decides not to be tested, then it will be her son who needs to decide whether to be tested, if/when he had his fiancee decide to have kids (they're getting married in Spetember). And I suppose, even then, it is not an issue unless they have a girl.

Decisions, decisions!

fransmom · 22/04/2006 15:32

there is a lot of decisions there! i tried to get tested a while ago, but bristol ha in their ultimate wisdom, decided that even tho my mom had died of oc, her first cousin had bc (and survived), i had abnormal cells showing 50/50 chance of getting cervical cancer in the next ten years (this was about 4years ago when i had them whipped out) that they're not going to test me! i now have a girl to worry about. i wonder if they're more worried about balancing their books than someone's future health....

prettybird · 24/04/2006 11:39

Shock fransmum and Angry. Must be a worry for you!

Is it worth going back to your GP and saying you are very worried and that you might have some of the "silent" sympotms, just so you can get tested?

fransmom · 24/04/2006 17:24

have been thinking about it for a long time but there are other reasons why i haven't gone back yet.........

when i had dd last year, she was quite big, 9lb 1/2oz, and came out with her hand/fist on the side of her face. instead of folloeing my birth plan to letter, i said i did not want to be on the bed cos i knew i would end up tearing badly and need stitches, guess where i ended up. and i did have 3rd degree tear, in surgery for hour plus, instead of estimated half hour.

anyway, suffice to say, they stitched wrong - too much stitching so everything hurtBlush so have been wary about going for colposcopy again. tho i should really, it'sa just getting up enough courage to go

prettybird · 24/04/2006 18:02

Ouch! :( I understand why you are wary.

Is it possible to go back and see if you just get some genetic counselling for the moment, given yuor family history? Have you tried doing a family tree and seeing if anyone else has been affected? That might give you additional ammunition? Then it is just a case of a blood test (altlhguh unless they identifed which gene with your mum it might be difficult - the advantage in my family's case was that theyknew exactly wheat they were looking for).

fransmom · 24/04/2006 18:08

i have tried but not really anyone left that i can ask. my mom died about7 years ago, so can't ask about her maternal aunts. her paternal family are still around, it was her 1st cousin, her dad's sister's daughter (if you can work that one out!) that had bc and survived. i remember mom saying that she had an aunt who was riddled with it but no other info. as for dad, he's decided to p/off with his wife and cut all contact.

fransmom · 27/05/2006 10:09

hi prettybird, have had repair op since i last posted here. just have to wait for recovery so i can then think about the colposcopy again. hope you all ok

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