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.

Aw thanks,anorak . If I were being organised I would be thinking about what to do in London other than visit the loverly hospital!

Me and Dh have only just finished doing our wills. It has taken us 2 years to get the thing signed and it took us about 5 or 6 years to get it organised. Really, it's not complicated, and we are just very good at procrastination. At some point in the year there is Free Will Week, as it causes so many problems when people die intestate. Every adult would be well served to have a will of some sort, regardless of their state of health.

just saying hello - hope you're all ok today I haven't heard anything else about my ultrasound appointment, but of course i now have imaginary pains in my boob and can't keep my mitts off of my tits...

Just read your post, Pigleto. So sorry - you must be scared. One day at a time, lovely, and keep focussed on getting through it and getting better.

Love to you all;

xxx

Sorry I have not been back on, things have been manic at the Madhouse

Pigleto - I am so sorry. I do hope that you enjoy your break before the fighting starts

BlaDeBla - good luck for today

Persephone the lack of urgency with the appointment suggests they don't think it's too serious, hopefully.

BlaDeBla, please let us know how you get on.

Pigleto, where are you? Are you OK?

I have been referred to the lymphodema clinic but there is a 2 month waiting list, so I have to try and control it best I can during the waiting time. I can't manage a lot of the basic chores without my arm swelling right up so I am going to get a cleaner.

At the moment I am trying to ward off a cold that all the rest of my family are suffering with - so it's raw garlic for breakfast, dinner and tea.

pffft. breast care sister just phoned to ask why I'd missed the ultra sound appointment they didn't actually tell me about! oh if i only had the foresight to turn up on spec. rearranged for a fortnight (which, yes i agree doesn't sound too scary, but you know how you obsess on these things a little and worry. have been a little teary since she phoned, but 12 yo dd is home today so can't have a good old sob. stiff upper lip and all that...

Oh there was an appointment then - so maybe it is being treated with more urgency than it seemed.

The art of having a little cry at your own convenience is underrated in my opinion. I use that tactic a lot. When I am really stressed, once or twice a day when everyone is out. I know it sounds sanguine, but it truly helps.

anorak, that's absolutely pants that you have to wait for 2 months. you clearly have a problem and the sooner you get treatment, the better. can you get hold of an arm compression sleeve in the meantime? maybe one of us could order one for you from within the UK and send it over?

lalaa, thanks for that offer. Apparently this lymphodema clinic hasn't been open all that long, but it's the only place in Bermuda where you can get treatment, and it's taken off in a way no one predicted - hence the long wait. I've been looking into getting a sleeve - there don't seem to be any available in Bermuda but I could send off to the US for one. I have put a tubigrip on my arm for now.

anorak, i'm worried about your arm. I know it's up to you but I can't help myself.

i've had a whizz around the internet, because tubigrip isn't the same as a proper compression garment - mine is much much tighter than a tubigrip - and i've found this. You need to scroll down the menu on the left and choose the 'armsleeves' option.
There's a sizing thing which will help you get the right size for your arm.

It's US site, so presumably they would ship to you.

There now. I've given you the info so I can stop fretting. Ignore me if you want!

I am sorry to hear that you've got lymphodema. What a bugger. I hope you enjoyed your birthday Pigleto, and I hope your 1st chemo was ok. Everything happens so fast and it's hard to take it all in.

I've just got back from London. The lump is the implant crumpling, like a ballon that's been deflated. They want to take it out and put something else there, but I said no more ops for now unless it's absolutely necessary, so I may have it done in the autumn.

I have a snoozing dd on my lap

lalaa, thank you. I will send off for one. Can you advise me as to what pressure to start off with? I feel a bit confused by the choices. We can get a US PO box here and that makes shipping from the US relatively simple.

BlaDeBla thank goodness it's not anything life-threatening. Still a nuisance though.

no problem, anorak.

Mine is 18 - 21mmHg. My lymphodema is barely noticeable to the naked eye - I can just feel it in my hand and I find it difficult to grip things hard so I don't think my compression sleeve is the most supportive one you can get - so probably just as well for you as you need to get medical advice about how they want to treat it, and your medical practitioner will no doubt have a view on what pressure you should be using. I'm not medical in any way, but I can't imagine that using one of these will hinder the treatment of your arm.

No, the lymphedema nurse actually advised me to get one, but she seemed to think I could walk into a pharmacy and buy one - sadly completely wrong! But certainly it will help. But I can't even get examined for two months so I will have to take a guess at which pressure to buy - will get one like yours. Then when I finally get to the lymphedema clinic I will probably get another one - that's what the nurse said.

DH is going to rent a US PO box office in town before he comes home from work and then I can order it. Many thanks for your advice.

Hi girls, just checking in

Glad there was a rational reason for your lump BlaDeBla - but as anorak says, still annoying.

Hope those 2 wks whizz by for you quickly Persephone...

love to all
T
x

Thank you for all your cheery posts Tickle

I would like to write a bit of a post.

My genetics consultant has now confirmed that I do need to have the genetics testing to find out whether I've got the stinky genes. I've written to the hospital to complain about why they are not funding the test (which they should be) and am awaiting a reply. My genetics consultant says that my family history indicates a high risk for ovarian cancer anyway, without needing to have the test.

I've written to my oncologist to highlight the genetics findings and I asked him whether in the light of this information I should now have annual MRI scans instead of mammogram/ultrasound combo. His response was I'll write and ask the breast unit and we should talk about whipping out your ovaries.

So basically I just wanted a moan about how it just goes on and on and on and on and on for me. I keep talking about wanting things to be 'back to normal' and when I rationalise it, I know that nothing will ever be like it was prior to diagnosis and this is my new normal. I'm fed up with having to live my life around medical appointments.

I know I should be happy to be well but sometimes I just need to vent.

End of post.

Oh lalaa, I do understand how fed up you get. Everything I've read has said that life after a cancer diagnosis will never be the same again, so yes, a new normal is what we can aspire to.

You're right to push for the best treatment you can get, in the words of Monty Python, sometimes you just have to complain until you're blue in the face!

It's totally understandable that you're sick of hospital appointments, I feel like that sometimes, then new problems (like my developing lymphedema) come along and you can see your quality of life pouring down the pan. You need a therapeutic moan from time to time before you get back to soldiering on, remembering others worse off than you, and making the best you can out of your capabilities and opportunities

Thanks anorak. It is good to have the support of people who know how it is.

Hi, you Wonderful Wise Women!!

It's been a fab experience reading this board. Very moving. Sometimes very funny. Sometimes sad. But it's just wonderful how supportive and sensible! you are.

And now if it's OK I could do with some of your advice

I was diagnosed in early Feb this year and had a WLI and sentinel node biopsy on March 4 (my birthday )The lymph nodes were clear, but they then wanted more from where the lump was. So, on April 3 I was back again for more surgery.

Everything's fine and I don't need more surgery, just radiotherapy and Tamoxifen (Just radiotherapy and Tamoxifen!?? Hmm...)

Anyway, my problem is and it's teeny tiny compared with what loads of you are coping with is that I seem to have lymphodoema in the breast. And I can't find anything very helpful online.

The breast care nurse suggested I got a good, supportive bra with lots of lycra. My problem here is size: 36H . Ain't many sports bras that size.

And what about general maintenance, so to speak? And hints, tips or ideas? Any of you coping with breast lymphodoema?

Loads and lots of Big Hugs for you all. And special Hugs for Pigleto.

Jane xxxx

Hi Jane. I've developed lymphedema in my arm and have been referred to a lymphedema clinic in the hospital. However there is a 2 month waiting list so my chemo nurse very kindly recommended an independent lymphedema therapist and I went to see her today.

Find out if you have a lymphedema clinic in your hospital and if not try the yellow pages or internet. Perhaps you can have a consultation with a professional therapist and get the kind of advice you need.

Anorak - you asked how I was on another thread (in Jan!!). I'm fine at the moment, back at work, and hoping to try and get life back to normal, but like you've said -your life's never the same after you've been told you've got a life threatening disease. I try to keep my fears and upset to myself!! and put a brave face on, but mostly I'm positive.

Hope you're feeling OK and hope your lymphodemas sorted soon.

Hope everyone else is OK - chins up!

Hope everything goes OK for triplets DH.

Hello all

Hope everyone is OK.

Jane - wonder if you have seen Rigby & Peller's site for sports bras... here

The Royce appears to come in a 36H

Hope that helps!

T
x

Hi all

thanks for all your kind words and support.

Thanks to a lovely generous and extremely wealthy uncle in law I am currently at the Mayo Clinic in minnesota USA which is the biggest and best cancer centre in the world (so they say). I am not due to start chemo until Friday so I thought it good to get a second opinion.

I saw the oncologist yesterday and he had some interesting points to make. The chemo that they recommend over here is slightly different and given fortnightly with immune boosters. It works out £2000 more expensive than the EC90 4 cycles at three weeks which I was prescribed under the NHS but finishes 2 months sooner. All the statistics available indicate that it gives up to a 6% increase in survival. So I need to find out why my the NHS don't offer it and if I can get it privately in the UK etc before Friday.

He also said that 5% of the white population can't metabolise tamoxifen and that a simple bloodtest was useful to make sure that I was not one of these people. If you can't use tamoxifen they have to take out your ovaries and give you a different drug.

Then he said I needed a PET scan which I am having later today and a gene test because I am so young and my father has no female relatives.

I have to say that the treatment here is excellent, no queues, no hanging about. The staff I have seen really make me see the ones I saw in the UK look hurried unfriendly and undertrained. Of course it is probably costing a fortune but I haven't asked.

Hi anorak how did your meeting with the private lymphodema bod go?