Mutual support thread for breast cancer patients. All welcome including non-cancer patients who want to chip in!

[anorak]

There seem to be quite a few of us now so I thought we might like a place where we can congregate to laugh, cry, share, compare notes and give each other a bit of support.

Morning Pigleto.

I am so glad thaty you are getting some second opinions and that your wonderful uncle has been able to foot the bill so to speak.

You really can not put a price on life can you.

How are YOU feeling? Are you getting any sleep?

Love to all

LaLaa - I lurk on herre occassionally, as I have a strong family history of breast ca - my DAd died in 2005 of breast CA, and he carried the brca2 gene, as does my sister. I have not been tested yet, as I have a young baby, and was pg at the time of the counselling. I know a little bit about it, and would certainly be happy to share our families experience of testing etc with you. I hope I'm not intruding.

I'm posting and running now, as I'm taking DD to nursery for her first visit, but I'll come back later.

Hi madhouse. er sleep, whats that? It's four in the morning out here and I am doing my nut about the PET scan and what it might find and the big needle with the radiation in that I am getting later. I am such a baby about needles.

Shrinking - I am braca2, seeing the plastic team next month, have already seen breast team and gyny.

I am off to toddlers, but would love to chat to you

sagpuss, I'm really sorry to hear about your dad. Has your sister decided to do anything about her diagnosis or is she relying on extra monitoring for now?

Pigleto - Needles do worry some people. I think you are very brave - do you have support out there - get some SLEEP

I have to go as I have two mad todders wanting to go to toddler group - arggggggggggggggg

Hope you have a lovely time at toddler group.

ok back now.

My sister is being monitored, she has had mri scan, and seen gynae too. She has all the other risk factors too - she's over weight, drinks too much, never had children, so never breast fed, and been on the pill for years. We have a huge family history of later life cancers, so we're hoping that if it does strike, it should be later for us.

Dad's cancer was badly timed. when he was first dx it was 1992, and Tamoxifen was only being trialled. they offered it to him after his mastectomy, but they couldn't guarantee what it would do to a man, so he refused. 10 years later it metastisised into his lungs, liver and bones. A helpful consultant said, "if you'd had tamoxifen at the time you'd be ok".

I need to book an appt with Guys to get my bloods done. My Dad's brother also carries the gene, and one of his sons is getting tested. thankfully the 2 brothers of my dad who have all girls don't carry the gene.

Thanks for that

My History:

My Aunt was diagnosed with orvanian peritoneal cancer in 2006, even though she was being sceened. She had an operation to remove the cancer and then chemo. She was also offered a blood test through the centre for life, as we have a high level of femal cancers in the family. In fact my other aunt died of ovarian and many of the other females of breast and other cancers between the ages of 40 and 55.

we thought nothing of it and just will that she was getting better and she is still in remission, but her results came back BRACA2. So the tests were offered to all imediate living relatives. My mum came back positive and one of her daughters did. Everyone else is negative. I also cam back positive. My brother has not been tested yet.

I have seem both the gyny and breast consultants and the recomendations are to have a double mastectomy with reconstruction (seeing plastics team next month) and to have my ovarys and tubes removed.

The reasons are I am a larger breasted woman and screening is harder to perform, ovarian screening is very hit and miss and also Full body MRI is not offered only breast and again consultant informed me that ther is still a high change of growth over a year.

I will need to lose weight to get the reconstruction as my BMI is over 30.

I already had the pre op checks for my gyny op, but it turns out I have anemia and low iron, folate and B12 levels, so am off to see a specialist in 3 weeks time. Iron levels are not increasing on iron injections or tablets . Current level is 8.7, was 9.8 needs to be at least 10 ideally 11 preoperation

Although my issues are small compared to those who have been diagnosed with cancer and actually going through the various treatments. My opinion is that if I can hit it off at the pass that it is a blessing

TheMAdHouse - that's a hugely tough decision to make. I don't envy you at all. I think if we carried Braca1, i would feel more like taking action, but as I said, ours is typically later life cancer. My Dad's mum died in a car crash, so we don't know about her genetics, but of her siblings, all 3 had cancer of breast or ovary. the latter died as it was disovered too late, but the others survived, and their daughters have variously had breast ca too.

I started looking into it all before dad was re-daignosed. I was curious. When dad was tested he had jsut been dx with the 2nd cancers. It came back negative for braca2 (which I think is worth knwoing LaLaa). they held onto his sample, and not quite a year after he died, they re tested it, and found it. My Mum was v relieved that he didn't know he carried the gene.

I listen to all your stories, and thnk so much of my Dad's fight. It makes me v sad when I see you all going through so much, at different stages in life, and with children etc... I hope not to sound patronising.

Well you know, shrinking, I keep thinking about people who die very young, teenagers in car crashes, twenty-somethings murdered, before they have even had a chance at life. So things could be a lot lot worse for me. I am 46 and have been happily married to a wonderful husband for coming up 9 years, I have my children, have done many interesting and exciting things. No one wants to get cancer and the treatment is foul, but it doesn't strike you down overnight so you don't have time to plan and do and say things you want to. We have many blessings to focus on.

It's lovely to see so many posts since I logged out yesterday - we all help one another. Pigleto how wonderful that your uncle stepped in - you sound so much calmer now. I don't suppose you could stop off at Bermuda to convalesce afterwards?

The private lymphedema lady was very nice and says she can get my condition under control in two weeks - so that'll be four weeks earlier than even being seen at the hospital clinic. All I have to do is get it okayed by the insurance company.

Shirinking - I can understand your mum being glad your dad didnt know. My mum and aunty are devestated that this is something they have passed on and I think that is greater than any of the treatment my aunty has had for her cancer.

My decision was realativly easy really I have two young nad wonderful children and I would like to see them grow up and develop in to young men.

Anaorak - I also understand, I lot my dad in an indutrial accident 7 years ago. I am sure it was easier for him to die without any of the pain etc, but the suddeness. Our own mortaility is really hard to live with. I too am blessed and will be counting my blessings. I hope the insurance OKs the treatment.

I am hoping mine will OK the anemia investigations, they wont cover any preventative stuff re the cancer

TheMAdHouse, Anorak - are you in the UK? I was wondering if LALaa is in the UK too? there should be no quesiotn of her h/a paying for the genetics test if she is in the UK.

I know what you mean about the life thing - we had a chance to do some stuff with Dad, and get used to the idea of what was happening - esp afer the 2nd dx. My son was 6 weeks old when he died, we managed to concieve 1st time, perfect timing.

I could walk out in front of a bus tomorrow, and still have carried the braca2 all my life, and never have any effetcs from it. This is why I think even if I carry the gene I'll probably just go for monitoring. maybe I'll feel different if I do carry, depends on what options they give me. i guess having 2 small dC's makes a difference.

I'm English but I'm living in Bermuda at the moment shrinking.

You have a very tough decision to make if you are a carrier.

I am in the UK, TBH it the initial test in any family that is the pricey one and also the one that takes the longest - my aunts took 5 months, after her diagnosis my mums was tested ASAP and then me.

Due to my female line popping off early, it made my decision easier. My mum is the only female over 54 who has not had cancer or died from it. My boys would only be 19 and 18 then and how much time would I have taken out for treatment etc. SO I am not willing to take that chance. Neither is my cousin. Along with the diagnoses you need to take family history also comes into play. We received councelling from a MacMillan genteics counceller and she is great. Also my aunty (who is in remission) was being screened - so it kind of made me lose a little faith in it, espeically as they missed all her symptoms.

Interesting to read about genetic testing. Dh has been offered it for bowel and prostate cancers, but still hasn't filled in the form. I have no family background of cancer, at least not for immediate family.

Glad to hear you again Pigleto! I'm so pleased that something positive has come in the form of your uncle's help.

anorak -- I think a lymphodoema specialist is a good idea. I think there's one at the hospital I've been at, so I'll make an appointment.

Tickle -- thanks for the very useful link. Royce looked really good so I went to their site, and found a stockist near me. The shop ('Betty & Belle' in Altrincham) look great, too. And they specialise in post-surgery bras. So that's excellent!

pigleto -- Hoorah for Uncles-in-Law!! You sound as if you've had a rough time with the treatment. It's a postcode lottery, isn't it? Everything went fast and smooth for me, no unnecessary hanging about, and kind, competent staff. But I've heard horror stories from other parts of the country. WHY? Why can one place be excellent and another complete rubbish?

Interesting what you say about the tamoxifen. Wonder if they've done that simple bloodtest on me??? Hmm... Think I want to see my notes!

Hi pigleto - nice to hear from you and that you are being so well taken care of

Night night everyone else!

T x

I have had my pet scan. It was not too bad but the syringe they injected me with was in a sort of lead jacket to stop the nurse being irradiated.

They have six PET scanners here in one corridor which is the same number as in the whole of the UK just about. I am now the ready brek kid and have to avoid small children for 24hours in case I irradiate them.

Results will be ready tomorrow. So I will be sleeping really well tonight. not.

Anorak, has your dh been shown how to do a lymphatic drainage massage on your arm? Have you got your compression sleeve yet?

Hi tickle. It is quite nice to be so well looked after, I just wish the circs were different.

Pigleto - I have everything crossed for you, but we will all be here for you no matter what the results

Love TMH

Good luck Pigleto. I' ve read a bit of your story. Hope today goes as well as it can.

Hope the time passes quickly pigleto - are there 400 channels on the TV over there? Good luck. x

goodness it's been busy here.

shrinking, i am in the UK, but my hospital is not currently funding gene tests. I have complained and they are investigating it. It sounds, from the guy who is managing the complaint on my behalf, although it's a total bureaucratic nightmare and that lots of different departments are all saying it's somebody else's fault. I wait the response with interest. Actually, I'm simmering away, waiting for them to come back to say it's not going to happen and then I'm going to blast the Chief Exec and probably do a media blitz (as I had to do 2.5 years ago in order to get herceptin). I was on the local news and front page of our local paper twice - was all a bit much to cope with at the time as we were in the middle of getting over being told I'd got cancer, so I reckon it would be much easier this time (plus this is a procedure which should be available to everyone, according to NICE, unlike herceptin at the time).

Copywriter Jane, I have breast lymphoedema as well as it in my arm. I'm seeing a lymphoedema nurse regularly although it's not yet under control. The problem seems to be that's it's difficult to get the level of compression you need in that area! My nurse has shown me a taping procedure, which involves lots of sticky plaster taped in strategic places (breast, and back too if needed) which pulls the skin away with your normal movement, allowing the lymph to drain. It does work for me a bit. It's called Kinesiotape and there's a bit about it on the web in reputable places like cancerbackup and breastcancercare - do a google on lymphoedema and kinesiotape. Definitely worth asking your lymph nurse about.

I'm off to look for supportive bras.......

hello lalaa and CopywriterJane -glad you have joined Copywriter !!

also

pigleto - ask your consultant about this: I'm not on tamoxifen because my consultant wanted me to have arimidex (also known as anastrozole). this is only effective on post menopausal women, but i haven't had my ovaries out. i have a monthly injection of zoladex (also called goserelin) which has turned off my oestrogen and am therefore in a chemically enforced menopause. the plan is that this will go on for five years after which i'll stop taking it and my periods might come back. (unless gene testing events overtake us.....)

so if tamoxifen isn't suitable, maybe this is something you could talk to him/her about?