I feel so sorry for you younger women. The decisions you have to make are much harder than mine. I was found to have the BRACA2 gene fault after being in a long line of BC/ovarian cancer sufferers in my family and, so far, the only survivor, which is quite scary. I have to try to break the mould and as I am the only one to have been genetically tested and therefore aware of the problem I am going to do everything I can to mitigate the risk. As I say it is easier for me as I had already gone through the menopause when I was diagnosed at 58 but am experiencing hot flushes again now, cause unknown, as I was ‘triple negative’ and have had chemo prior to one mx and radiotherapy but nothing to follow. I am now due to have a second, prophylactic mx and double reconstruction (DIEP with implants) on 21st September. I am seeing the gynaecologist next Wednesday to arrange the oopherectomy (sp?). It is a no brainer fo me. My daughters of 30 are awaiting results of their test and I’m just hoping upon hope that their tests come back negative. I am also awaiting results of a mammogram on my ‘healthy’ breast which has been driving me mad with itching. Oh what fun - not!
Hugs and positive thoughts to you all.
Jan
x
Hi Jo, What tricky decisions we all face. My situation is similar to yours in some ways I think. My grandad had pancreatic cancer, my mum died in her very early 30s of bc about 30 yrs ago, my sister was diagnosed with bc 3 yrs ago age 35 and I have just been diagnosed with bc in the rt breast and chose to have a bilateral mastectomy.(im 41) So glad I did as there was a large area of high grade dcis in the other boob too. I would never have regretted my decision anyway but now knowing that I really dont! Im now having chemo that will take me to next spring then I intend to go to the gynae to ask about an ooprectomy. As far as Im concerned im done with them and my priority is being here for my kids.
Incidentally my sister has been tested and told she is not braca positive, not sure now though whether they will be testing me?? I assume not, but I know Im going to take part in some trial at Birmingham but awaiting the details.
Hope you go on ok, wish now with hindsight I’d have had a risk reducing mx as was always on my mind
Mandy x
Hi all!
Thank you for all your input and sharing your experiences. Just thought I give you all an update, sorry i havent posted for a while, but the summer has flown by.
Mandy, I do hope you are ok, I went to uni in Birmingham, (oohh happy days!) small world. As i understand BRCA, your sisters result has no impact on yours, as we inherit from our parents and its a 50/50 chance you have/have not the fault.
Jan good luck for the 21st. I do hope your mammo results were clear. DIEP is the method i am going to use to reconstruct, it would be great to hear your experiences.
lulu Thank you for sharing your experineces, I hope you are ok.
I have recovered very nicely (if i do say so myself) from my Hysterectomy and ovary removal. I have an appointment next week with the Breast team to discuss the next step, which will be a left mx with recon and the delayed recon on the right side, using the DIEP method. fingers crossed the waiting list isnt too long i would really love two boobs for xmas. That terrible winter of 2010 when all this begin seems such along time ago, how things change, how we change, I dont think we know just how strong we are until our strength is put to the test. Good luck and best wishes to you all, i will keep you posted on my next meeting.
Jo.xxx
hi jo lovely to hear from you again and glad your update is sounding so positive… good luck with your upcoming procedures.
im still not thinking about mx yet, but have told my boss at work i may require time off in the next 18 months to have it… will see how i feel in 6 months about having it done… im still so undecided but my onc said def leave it at least a year or so after treatment.
back to work and enjoying it so much.
love and hugs xxx
Hi everyone!
First of all we had some great news today. My oldest daughter got the result of her genetic test and it was negative. We are all breathing a huge sigh of relief. Now I’ve stopped worrying about that I can start to worry about the op on Friday although, hopefully by this time next week everything will be OK and I will be on the road to recovery. To be honest if I didn’t have to have the second mx I don’t think I would have had the reconstructions but, as I’m having to have that it seems that I might as well get it all over with. My mammogram came back all clear - hoorah - but the pesky breast is still itching like mad. Maybe it knows it’s a gonner and it’s protesting in the only way it can!
I’m also on the waiting list (3 months) for an oopherectomy which is only a day case op from what I have heard.
I’ll keep you informed about my progress. My friend who has already had a double mx is waiting to see how mine goes before deciding what to do.
best wishes to all
Jan
x
Jan,
so glad your daughter had good news.
Good luck for your op on Thursday.
Rattles x
Jan pleased to hear your daughter had a negative test.?.. And glad your mammo was clear.
As for your ooporectomy its usually an overnight stay from what iv heard even if done as keyhole surgery… I was going to have an ooph but opted for a hyst on the day so was in for 3 nights, but would have been 1 night if id just has the ooph.
Good luck on friday x
Hi Lulu,
Nice to hear from you.
At our hospital you are in and out in the blink of an eye. I came out the same day as my mx and my friend, who had a double mx and didn’t go into theatre until around 1 in the afternoon came out the same day too! They told me the oop… was a day op! My surgeon’s nickname is Speedy Gonzales ha ha!
I’ll be in for 3 nights with this op even though it’s going to take around 10 hours seemingly so should be out by Monday. Here’s hoping anyhow as I just long to get back home.
I’ll keep you posted early next week. Hope you are OK.
Jan
x
hi ive just been diagnosed with breast cancer but im now worried about my daughter as my mum had ovarian cnacer at 49 and my 36 year old sister has just had a full historectomy due to ovarian tumours.
Hi Jelly mould
sorry to hear your story… I hope you are being referred to genetics to discuss your family risk. Not sure what age you are but you look quite young in your pic so if your under 40 even without a family history of BC your daughter would be entitled to early screening from around 35 even if you dont fit the criteria for testing. But if mum and sister both had ov ca that would put you in a higher risk for getting it too and prob worthwhile seeing a gynaecologist about ovary removal… With a family history like that its possible there is a genetic cause but not all families with a string history carry a gene change but def worth speaking to genetics about it… Im presuming your daughter is still quite young and even if a gene fault was found in you they would not test her for the same change until she turned 18.
i carry brca 2 inherited from my dad but my 21 yr old daughter hasnt been tested yet although she is considering it within the next 2-3 years. I also have an 18 yr old son and he has always been keen to know, but now hes turned 18 im not sure he actually does.
ill be there to support them but it is their decision to make.
take care
Lulu x
Hi there,
You were right Lulu and the oopherectomy is an overnight job. I am in next Tuesday (6th Nov) and should be out the following day but maybe it will be the day after. As I am post-menopausal I don’t suppose there will be too many additional side effects from this op although I am having hot flushes now which I am putting down to chemo. Does anybody know if there are there any natural remedies you can safely take to combat some of the effects of total lack of oestrogen?
Take care
Jan
x
Hi Jan
You may find the BCC ‘complementary therapies’ publication useful to read as it contains information about natural remedies:
www2.breastcancercare.org.uk/publications/health-wellbeing/complementary-therapies-bcc55
Best wishes
Lucy
Hi jan
good luck on tues. something’s you can do to help prevent flushes are try to keep your environmemtal temp fairly constant. If you go from a cold room to a hot room your more likely to get a flush so coming in from the cold getting on a bus or when your heating comes on. Spicy food, hot drinks, caffiene and alcohol can all increase flushes. Xxx
Thanks Lucy and Lulu. That’s very helpful.
Jan
x
Hello Jan,
Think our paths have crossed on other threads. I have a brca1 mutation. Had biltaral mastectomies in Feb and the discovery of an occult tumour meant that my oopherectomy has been postponed until Feb next year. I would be very keen to hear how you get on (if you don’t mind) with the surgery and recovery. Are you having key-hole?
I am 43 years old, so probably not post menopausal but chemo played havoc with hormones. I have heard that sage tea helps with flushes. Have been told that we can ask to be referred to a menopause clinic if any problems arise.
Good luck, Rattles x
Hi there Rattles, yes we did ‘meet’ on other posts! Nice to hear from you again. I sure will let you know how I get on and thanks for the tips re lack of oestrogen symptoms. I will take anything (almost literally) that will help and is safe. I’m still munching away on beetroot (or taking the powder) melatonin, aspirin, selenium etc etc. I always tell the onc and she just rolls her eyes!
Yes, it is keyhole surgery. After what we have all gone through the nurse told me it would be a walk in the park. Here’s hoping.
Jan
x
Hi Ladies,
I have read your posts with interest. I am just waiting for BRCA test results. Should be in by end of November. I have had a bilat mx (one prophylactic) and temp implants. Had a widespread grade 5 DCIS with small node involvement but fortunately it’s all gone and I didn’t need any further treatment. I’m seeing the plastic surgeon tomorrow regarding DIEP recon as I had to have one implant removed mid Sept due to infection. The sooner the better for me, I don’t like the temp implant or being lopsided.
My Nan died of pancreatic cancer as did my Mum and she also had bc aged 47. They tried to test my Mum but she refused and she was never keen for me to be tested but to me knowledge is power. They are now indicating that BRCA2 is linked to familial pancreatic cancer so that is why they were so keen to test me for the gene. I’m not sure how I feel just yet, it’s so out of control and there is nothing I can do about the results. I hope it won’t be the straw that breaks the camels back if it comes back positive.
I will definitely have my ovaries removed if not a hysterectomy because my periods are vile. This is all to be decided later and I think the biggest thing for me will be the pancreatic connection. I will have to go to Southampton or Liverpool for an ECRP investigation every year to check my pancreas. Bloody nightmare so I’m keeping everything crossed.
Jan - I hope your op goes okay Tuesday, will be thinking of you.
Viv xxx
Jan,
Hope your op goes well on Tuesday, I’d be interested to hear how you get on, as I am scheduled for the oopherectomy on 20th December.
Both of my paternal aunts have had ovarian cancer, the yougest got it at 37 and died at 41, the other is currently having chemo, so I don’t want to delay, but now I have a date, it does seem very final.
Because I am BRCA1, my tumour was triple negative and am only 36 they have decided that I will be given the mirena coil and oestrogen patches which I will start on straight after the op. This is also to keep my womb viable in case I want to use my frozen eggs in the future.
Take care
Jen
Viv
i too have pancreatic cancer in my family and seeing my genetic counsellor in a few weeks about joining the europac trial. Which is a a screening and registration research project for brca2 with panc ca in the family… If you do turn out to be brca2 pos this may be something you could follow up. The ovarian and pancreatic cancers were the ones that worried me most as no BC in the family except me and i have already outlived the uncle with panc ca who died at 43 So do feel i want to get this checked asap.
jen 37 is very young for ovarian… my relation died at 45 and when we discovered this i was really keen to be rid of mine and had them out at 42 but actually had a full hyst… But my situation is different to you as had no eggs and just felt not much point hanging on to my womb as couldnt have more kids anyway.
good luck everybody xxx
Hi there, Got back from hospital yesterday lunchtime and am feeling absolutely fine. Only got a little tenderness around my tummy but nothing at all to worry about. Felt good in recovery and slept OK straight away in hospital. Feels so good to have that behind me! Best wishes to all. Jan x