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Mumsnet Discussions:
Health
: Mutual support thread for breast cancer patients. All welcome including non-cancer patients who want to chip in!
(438 messages)
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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.
Hello beep, so glad you spotted this, I was wondering whether to CAT you to tell you I'd started this thread. Do tell me all about it.
Just to get us started, we could introduce to each other.
I was diagnosed with breast cancer in November, after finding a lump. I had a DCIS tumour with a more aggressive tumour inside it. I had a single mastectomy in December and 10 lymph nodes removed, of which only the sentinal was positive. I am supposed to be cancer-free now as far as is know, and am a third of the way through a 20 week course of chemotherapy, to make sure. After that the plan is to have a reconstruction op and 5 years of tamoxifem.
I was diagnosed with brast cancer in november.I had two tumours that had joined up.I also had a single masectomy in december and removal f the lymph glands several of which were affect> I have had 3 otut of 8 doses of chemo (the first 4 are FEC and the next 4 are)Taxotere). After that I will have 5 weeks of radiotherapy.
how are you coping with the chemo.It is really knocking me up.I am not being sick much now but feel very ill for the first week then tired for the next week,but with having had this cold i am only today feeling anywhere close to being human.
I really don't want to join this thread . But I suppose there is no hiding from it.
I have DCIS with something nasty inside. I am going to have my armpit scanned on tuesday but the (terribly nice and rather dishy apart from the fact he kept refering to me as a cancer patient) surgeon said he thought my nodes were suspicious. The bastards.
Hi pigleto. I'm sorry you are going through this too. I too was absolutly terrified but the masectomy was nothing like as bad as I had thought, I remember being in hospital and asking when it was going to start hurting.I have surprised myself how well I have coped so far, I really hated needles ( i had 4 kids without pain relief in case they wanted to give me an injection!)but i have coped so far.
pigleto being in hospital after an op isn't so bad, you can drift off to sleep in a comfy bed whenever you like, you can read for hours, and there are no chores to do and no one asking you to make them drinks or snacks...
While none of us enjoyed having a mastectomy, it isn't a painful operation and is fairly straightforward and complication-free.
beep I am feeling much as you are with the chemo, they are telling me that when I change drugs next time the side-effects will be far more tolerable, and I hope the same can be said for you.
Hello girls - just a supporter here Good idea for a thread Anorak - my mum went through a mastectomy about 15 yrs ago and she had no-one to talk to about it really. She's fine now by the way
Good luck with scanning and op Pigleto (nice name btw!)
girls, hi. am also a supporter. Have been thinking about you anorak and glad to hear you're bravely (I know you hate being called brave) struggling through your chemo.
Hi dolally, thanks for the support. It's not that I hate being called brave, I just don't think I am! I didn't choose this, I'm just stuck with it, that's all.
Hiya. I have a different sort of cancer and have just started on my second course of chemo. Don't want to crash your specialist thread other than to say "Nah, you're not being brave" to beep and anorak <ducks>.
I beg to differ about hospital. I thought it was vile! My surgery was seriously major, though and I'm still not fully recovered three months later.
Hello, another supporter, great idea for a thread. I'll see if my mum wants to get on here - she's starting chemo in a couple of weeks. I think you are all fantastically brave, mum included, to be able to talk so frankly and face things head on... sending good wishes to you all
Another supporter sending positive thoughts to you all. I'm in same position as JRocks - my Mum was diagnosed with DCIS this last week and am going with her to see specialist bloke on Thurs. Am so impressed at how she has been so down to earth and positive, like all of you. Wish you all the best - hope you don't mind if I drop in for your knowledge in the coming weeks x
I have colo-rectal cancer. As for surgery the short answer is "too much". I was attacked from the back to cut out the blighter and fitted with a fashionable little pouch on the front. I had chemo-radiotherapy beforehand. Then surgery and now the follow-up chemo . They wait until you nicely recovered before they start again, lol. I'll have six cycles over three months then - lucky me - liver surgery for a secondary. I haven't asked what's after that .
I shouldn't lose my hair with my chemo but I get sensitive to cold and an unpleasant tingling called peripheral neuropathy.
Diagnosed with breast cancer in 2004. The cancer triggered off several other conditions with resulted in me spending time in hospital with deep vein thrombosis and a hysterectomy. I then had chemo, mastectomy and radiotherapy.
We found out the cancer had metastazed in 2007 and I had chemo for secondaries in the lower vetebrae and pelvis. Fortunately, it responded and I'm now on hormone therapy. Have to go back once a month for checks and bone strengthening treatment.
We moved to France a year before I was diagnosed, so all this has been complicated by struggling with a foreign language and an unfamiliar health system. I have to say the treatment has been superb but the bureaucracy a nightmare.
Hello all. I've been thinking of you Anorak and wondering how you're getting on.
I had an interesting time with the surgeon a couple of weeks ago. She was weilding a great big syringe, and we were trying to get my new boob down to a better size without all my skin creping up. Anyway, my next op is to get the port taken out of my side. It's quite uncomfortable, right under my bra strap.
The bc art therapy group is good. It's difficult being sort of in 2 places at once - being treated in London, but not living there. The bc nurses here are very kind, but say that unless I am going to have the whole thing moved to where we are, I should keep going to London. It's a real bugger.
There's a good book called 'The Boudicca within' about bc and reconstruction. It has fabulous photos.
I had mastectomy and recon at the same time. I was clonked out for more than 7 hours and coming round from that was awful. I thought that when they talked about pain and morphine that the pain should have been more like giving birth, but it was more of a horrible dull ache. It's much much better now, and I can move my operated side around pretty well.
Hello MM. Glad to hear after all you've been through you're on the mend.
Definitely want to avoid the term 'victim' around here!
Hi MaryAnn - I'm beginning to see that this thread may have some value for those like yourself who have non-mumsnetting friends or family with cancer
I'm having a lazy post-chemo day today. After being disturbed by a dodgy tummy a few times in the the night I slept till about noon and now I'm trying to think of something I could face eating (it's 2.30pm here).
DH is home so I can be waited on hand and foot if I so wish - I am very lucky. I'm tucked up in bed with laptop and remote control
Hello BlaDeBla, glad things are going well for you. Where do you live, and how do you cope with the trips to London?
Books are a good idea. I managed to get a book with pictures of women post-mastectomy and look at it before my op. It really helped prepare me for what I was going to look like afterwards and minimise the shock of it. I was even able to see that my surgeon had done a good neat job because I had other examples to compare it to.
Thanks for the welcome anorak..I mentioned the thread to mum earlier..as I was cutting off her hair in fact (we're trying to be all prepared) - she was really interested, just waiting on her broadband to be set up. Whether she ventures onto MN or not, I find it useful as a helpless bystander to understand some of what you're all going through..I'm anxious to anything I can to support mum through all of this. She's very much not a 'victim' either - it's not in her nature to be, and she's an utter inspiration.
As there are people with experience here..is there anything I can do while she's having chemo (aside from support and love) that will help? Has anyone found anything in particular that's worked to alleviate the stress, physically or emotionally? I know that this is probably a complete contradiction to the very concept of chemo, but keen to leave no stone unturned.
Sorry for rambling, trying not to make it sound all about me!
Things I have found useful during chemo...people willing to take jobs off my hands, as you do get very tired. Having little bits of food that you fancy, rather than big meals. Fruit gums or boiled sweets to suck when you feel nauseous. On days in between chemos when you feel ok, it's nice to be taken out to a restaurant or a place with a nice view, or to the shops, and have someone else drive so that when you get tired they can take you home.
If she does lose her hair it might go fairly quickly - mine fell out over 4-5 days, so to have headscarves or a wig ready before that is a help. The hair will be on every flat surface in the house so extra help with the cleaning is good at that point.
I would like to be a supporter but officially I'm still a breast cancer patient. Dx in Sept 05, surgery, chemo, radiotherapy and a year of Herceptin. Am nearly 2 years through 5 years worth of hormone treatment (I'm on Zoladex and Arimidex). Having a bit of grief with lymphoedema and my weight, but apart from that, all good.
I've just had an unexpected letter of appointment for the breast clinic (not due for my annual mammogram/ultrasound until the summer) and am a little freaked out. But knowing my hospital it's probably an administrative error! Also, seeing the geneticist on Monday - have been on waiting list since Sept 06!
hello maryann! <waves and remembers that must phone to arrange holiday meet up>. <dd most annoyed that the little boy who i mentioned will be at her swimming party on friday is not your ds, just another child she goes to school with who has the same name>
The Haven offers a lot of support and help to women undergoing treatment. There's one in Fulham in London and one in Bristol. I think they want to expand.
Breast Cancer care is really good,not just for sufferers. They also have support for carers and family.
MacMillan Nurses are another source of help of all sorts.
Citizens Advice is pretty much essential if you want to find out about benefits and they are vital if you are struggling with DLA forms (disability living allowance).
CAncer Research has lots of information and a really good website.
The Breast Care Nurse should be able to direct you to the nearest cancer centre, which often offers a retreat from everything and sometimes complimentary stuff like massages and councelling.
I hope this helps.
Anorak, I've changed my name and haven't changed it back - I've posted as Hellobello before
Hello lalaa. Can you tell me a bit about lymphoedema please? I have a raised vein in the crook of my elbow at the moment, feels like a taut piece of string, on the side where I had surgery. Should I be worried about it?
Hello anorak. Glad to hear that things are going well for you. What you describe sounds like you either need exercises for post-surgery to make sure that you get the full range of motion back in your arm, or you need to do more of the ones they've given you!
I did mine pretty religiously after I met someone who could only get her arm up to 45 degrees (and nowhere near her head) a year after surgery. I don't have any problems now, but you do need to keep up with them while everything is healing (and I mean a few months rather than weeks).
It doesn't sound like lymphodeoma - that's more a feeling of fullness/swelling, in my experience anyway.
I just wanted to say that you are not cancer sufferers, pantients you are all CANCERSURVIVORS.
You are all amazingly couragous and this is a great thread.
I was diagnosed as having a faulty BC gene, which leaves me with an 85% Lifetime chance of BC and a 60% chance of ovarian cancer. I made the decision this week with the help of the BC specialist to have a double mastectomy and am awaiting an appointment with Plastics to discuss having a double reconstruction at the same time. I am also going in to surgery in May to remove my ovaries and tubes.
I know that this is no way near as serious as cancer, but I hope that you will allow me to join you on your journeys.
Breast Cancer Haven websitemacmillan cancer support Here are a couple of links - I hope they work! The Haven have a lot of helpful information about Lymphoedema. I haven't checked if it's online, but if not they have a free dvd.
Thanks lalaa. I actually do have the full range of movement back and have done since a couple of weeks after my surgery. I don't think it is lymphoedema, you're right. Maybe just one of those things. Maybe a bit of phlebitis that will go away on it's own.
TheMadHouse that must have been a tough decision to make. It's relatively simple to say yes to these operations when you know that without them you will die. In your case you must have had a whole lot of pros and cons to weigh up.
TheMadHouse, you are very important to this thread. It's a major operation, and a major decision to make. I've had a single mastectomy and reconstruction, and for now, no further treatment. I was diagnosed with DCIS in August last year.
I have met women who have done what you are having done. Please keep posting!
I am 34 and have two boys the eldest will be three tomorrow. I look at them and I can not imagine not seeing them growing up.
I have already lost people I love to cancer and would not wish it on anyone. I have been given the oportunity to reduce my risk massivly.
I have a loving DH and feel that I am taking positive steps rather than having the screening and wating for the big C to get me and have to take even more drastic measures.
I have been lucky in the councelling I have received via MacMillan , therefore, although it is a major decision it feels like the only one I could make.
I was in so much pain before treatment that I was referred to my local hospice as they are specialists in palliative care. I was offered reflexology as I was having problems sleeping and it really helped. I also have a specialist nurse there, in addition to my specialist nurse at the hospital. They are there for me for ever if I need/want to talk to them.
I think any form of relaxation can help - whether massage, meditation or something you've not yet heard of.
I live near Bristol and have recently made an appointment at thePenny Brohn Cancer Centre. They offer residential sessions to people who live further away. I'm interested in art therapy too.
I'm also getting counselling from a local cancer counselling charity but I don't really want to go to the bad places when I'm feeling OK .
I know what you mean, ThingOne. I have the phone number for a breast cancer support group but I haven't phoned them. I've got visions of coffee mornings where everyone sits round in a circle talking about their aches and pains and it's put me right off. I should phone them though.
Good morning all. I am going in for an ultrasound on my lymph nodes to see if they look dodgy on Tuesday and hopefully then I will get a date for the mx. I am not sleeping well and keep waking up with gruesome nightmares, I really just want the surgery over with now. I mostly just want to know exactly where I stand.
Nice to meet you thingone, I am sorry about the circumstances. Your treatments sounds very frightening and uncomfortable.
Madhouse - you are very brave to make this huge step, but as you say the alternatives are unthinkable. I am only having one mx, but I'll let you know how it goes.
I have mostly decided against immediate reconstruction as I need to get better quickly with a two year old who needs me, and the surgeon thinks that I will almost definately need radiotherapy which would cook the implant if I had it done straight away.
My family have all moved in and are desparately trying to keep me entertained and to keep my mind off things. Everyone has been great but I keep bursting into tears in the middle of conversations though which is probably due to no sleep.
Sending out ginger and flat coke vibes to all those feeling sick with their chemo. Have a nice Sunday.
Heat the garlic and shitakes in 1 litre of the water. When it comes to the boil, turn down heat and simmer for half an hour. Then add rest of the water and the miso and simmer for a further half hour. Strain, discarding the garlic and mushrooms.
A batch of this stuff usually lasts several days and it can be kept in the fridge. I would drink a mug full every evening before bed.
Hello pigleto, good that your family are there with you, that will be a great help for you. You need to try and sleep to prepare you for surgery - how about a long walk and a couple of glasses of wine?
TMM I will try your recipe - I'd probably leave it unstrained and have it as a soup.
Pigleto - have you spoke to anyone regarding your diagnosis. I am receiving councelling and have been offered something to help me sleep, which has made a marked differnce to life in the Madhousehold.
I hope your appointment goes well on Tusday.
I am at the doctors in the morning as my iron level is 9.7 too low for sugery and we need to find out why. It was low after the birth of DS2, but came back up.
My eldest was three today - I can not believe how time flys. It seems like only yesterday that he was a tiny wee thing in my arms. I am currently finding it difficult to asign my breats which could feed and bring pleasure to me and DH, as such a dangerous part of me - strange isnt it
the Boudicca Within. TheMadHouse, it's got great pics of reconstructions and lots of information about what the docs can do.
I had a muscle taken out of my back and put on my front, and I also have an implant. We talked about not having an implant, but the surgeon decided that there wasn't enough to make it look ok, so there it is! It's very strange having all sorts of doctors admiring my new boob. Then of course there are decisions to be made about nipples... I haven't done anything about that yet, but you can get ones that stick on the front, or are more permanent, or you can get a tattoo.
Some people have a tummy-tuck to make new boobs out of and there are all sorts of procedures.
I went out with a friend the night before the operation. Oh silly silly me! When I came round, I was so dehydrated! I hadn't drunk all that much, but the operation is long. It takes at least 5 hours. Anyway, for what it's worth, it's not a good idea to drink the night before!
The intention is to do both sides at the same time, so the operation will be about 12 hours in length - so I am aiming to lose some weight, although I will lose at least 2 stone when they come off (I am a 36 H or HH).
I am hoping for the tummy one, but as I have had two c-sections we will see what plastics agree to. I am also thinking about nipple tatoos.
I would like to avoid implants, but just because I would not want to have to have replacements, but what will be will be.
I am just thankful that I do not have to have chemo and have been given this change to make a positive choice.
Are you going to be able to move after 12 hours?! I had a terrible time with the morphine and it made me very paranoid. I didn't want implants particularly either, but I thought that ultimately the surgeons should know what they're doing! You sound as though you've already done a lot of research.
No to the movement, need to lay still for an additional 48 hours. I am ususally quite good with recovery and healing. Back to work 4 days after gall bladder surgery when 20 pregnant with DS1, 2 sections back driving after two weeks and feeling great.
Currently my biggest issues are recovery and weight with a 21 month old and a 3 year old life is pretty active to say the least. I really need to lose 3 stone
I do have the advatage of being able to plan for the surgery and have decided to have the ovaries and tubes removed first becuase screening is extreamly ineffective for these cancers and I have already lodt one aunt to ovarian and one is currently in remission for ovarian even though she was on the screening programme.
I have been seriously looking in to this since the possibility arose of the gene mutation. I also have one of my cousins going through it too. We have been increadably lucky as a family - most are testing negative for the mutation - it seems to be dominant on the female side.
Anyway enough about me. How are you feeling at the moment?
Hi ladies.I hope you don't mind me posting on here. My friend found two lumps last week.One about the size of a golf ball but not round in shape and the other smaller.She has an appointment for next wednesday,to have a scan and maybe a biopsy.Of course it may not be cancer but if it is i want to able to help.I have offered to look after her ds whenever she need me to. Her dh is going with her next week so was thinking maybe offer to take them and pick them up. Also was thinking about having some flowers sent to her house the day before.But not sure if that would upset her. Any ideas please.
Hi everyone, hi lisa. Why should your flowers upset her? It shows you care and are thinking of her. Looking after her DS is the kind of help that is the most important of all. You sound like a wonderful friend.
I'm feeling a little better since chemo on Thursday, and very happy that it was the last dose of the harsh drugs and that I will be changed over to something easier to tolerate next time.
We have gales and storms today in Bermuda so I am having a sofa day with duvet, laptop and tv. Might make hot choc in a minute
Anorak, could the problem with your arm be cording ( from breastcancercare site) You may develop pain that feels like a tight cord running from your armpit, down your upper arm through to the back of your hand.
Cording is thought to be due to hardened lymph vessels and can appear six to eight weeks following surgery or even months afterwards. Cording usually gets better and the symptoms go away, though you may need physiotherapy to stretch the cords and you may be given antibiotics.
madhouse - I am going through a bit of a hard core health food thing this week as a reaction and a distraction, so I don't really want any extra drugs in my system, I don't fancy councelling as I am not up to speaking about this to a stranger at the moment (apart from you lovely ladies).
I am going to the spa with my mum tomorrow for a pamper treatment which should help me relax a bit.
Lisa I think your friend will be happy for some help with her ds. I am drowing under a heap of flowers at the moment which is lovely apart from when people do the sympathetic face at me, because I know what they are thinking and I don't want them to think that.
Hi pigleto, oh yes I know what you mean abou that face. You say the word cancer to people and sometimes it's as if all they can see is a skull and crossbones but we're not having any of that, are we?
Health food thing definitely makes a difference, I've found if I miss my minimum 5 fruit and veg I can feel the difference. I drink juice once or twice a day for when it's hard to eat, and vit and mineral supplements help too. I have found I can't drink booze while on chemo, it upsets my stomach so I have cut that out too.
Hi everyone, Just found this thread. I was diagnosed with Breast cancer Xmas 2005. I had a mastectomy with immediate reconstruction from the tummy and a reduction on the other! I then had a six month course of chemo.
I'd just like to say it does get better. I'm now on tamoxifen which is causing big problems with my ovaries and have had alot of ops over the last 12 months trying to avoid a hysterectomy.
I can fully recommend the reconstruction surgery and the nipple reconstruction and the nipple tatoo. I have to say I look in the mirror and feel really positive. I love my boobs even if one is not completely real.
I look at my two daughters every day and remember the the awfulness of chemo and 12 hour surgeries was definitely worth it.
MadHouse my dd's were 6 months and 2 when I was diagnosed and they were key to my decisions too.
My one recommendation! If you can try to alternative therapies (often offered at the hospitals) to complement your treatment. I found reflexology helped me with the tiredness and constipation!! of chemo.
Evening everyone... I'm really cross today. Took mum to one of the hospital listed wig places this morning- the woman running it could not have been less sympathetic if she'd tried, in fact she was bloody rude. It seemed too much trouble to help to find something even partially suitable, she practically huffed and puffed her way through the whole thing. Aaarhh..why are some people so useless? She knew exactly why we were there, so it wasn't accidental insensitivity either. My lovely mum came away quite distressed and even more unsettled by the whole thing.
Am actually wondering if I should go back there and say something.
JRocks - I would complain too. My aunt found the whole hair loss and wig thing one of the mopst traumatic experiances of her whole illness.
But the shop could not have been better, she and my two cousins (one who is a hairdresser) went together and had a ball. I received 7 text pictures of them all in various wigs. They had coffee and biscuits and she came away with a great wig that my cousin custmised and a much better attitude to the whole hair loss part of her treatment.
This is another reason that I was the one to take her, rather than dad (he's a bit lacking in useful things to say) as I am a hairdresser and thought I'd be able to find something with potential. The blardy woman all but said that there was nothing you could do with the wig once you had it, you were stuck with that style. A bit traumatic for mum really, but she's content to go down the headscarf route for now anyway.
JRocks that is totally untrue. I went and bought a wig and was told to take it to my hairdresser and have it cut and styled to my liking. Which I did.
And when I went to chemo a couple of weeks ago the nurses were talking to another patient about her wig, saying every week it gets shorter and shorter as she kept having it cut. Perhaps you should try a different wig shop and hope for a better attitude. The woman who sold me mine couldn't have been nicer.
I do wear a scarf quite often though as I find it more comfortable than a wig.
Hope you had a nice anniversary TMH.
pigleto I woke up thinking about you this morning, how are you feeling prior to your op tomorrow? Have you had results from your axillary ultrasound?
I've heard from quite a lot of women that wigs can be uncomfortable. I used to work with a woman who was completely bald. She had alopecia (sp), and everyone thought she had cancer. Her hair hasn't grown back - perhaps it's like that woman on telly.
I've been very tired a lot of the time. I don't know what the problem is and I am hesitant to go to the docs and get diagnosed with any other horrible diseases. The doc suggested that it may be my thyroid. Oh well, I need to have a kidney function blood test soon because of the drugs for colitis.
My arm has been quite uncomfortable on the side of the operation. For most of the day it has been feeling very heavy and achy. I don't think it's lymphodoema.
Must get kids to bed. Hope all goes well, pigleto.
Pigleto I will be thinking of you tomorrow and sending you positive thoughts.
I remember the night before my mx as though it was a week ago. I had to check in the night before the op and after the surgeon marked me up with the black marker I persuaded him to let me leave hospital and go out with my DH for a meal. I was given two hours to be back on the ward.
My DH found the whole thing surreal - watching 3 male surgeons discussing his wifes breasts and how big or small the reconstructed ones would be!!
Take the time in hospital to rest and accept all offers of help. I had my parents around to help but still made sure DD1 went on playdates, went to pre-school etc. Remember there will be a time in the future when you will be well enough to help out those who helped you - so don't feel guilty!
JRocks - the hairdresser who sold me my wig styled it to suit for me. The whole occasion was great fun - chosing the wig and getting it styled. Hubby said I looked 10 years younger. You should definitely complain. You received very bad service.
seb1 - that site is fantastic! I'm actually thinking about looking into the course on cutting wigs...if Trev Sorbie is still doing it. The site only gave details for a course in 2005, but there's a number. Maybe I can help some other people too then...and no-one will have to experience dragon wiglady again. grrr.
I had the ultrasound which unfortunately found two suspicious nodes which they biopsied. The surgeon wanted to wait for the results before he operates so that he can do a clearance if that is what is needed.
Which means that instead of having my op today I will have to wait for two weeks because it is easter and everyone is going on their holidays. AAAAGGGHHHHHHH!
I have gone into denial slightly as it all feels too unreal.
Does anyone have any top tips on what to pack in my hospital bag?
Sorry to hear your news pigleto, I know my mum found the waiting particularly hard, she just wanted it all over with as soon as possible. I hope the fortnight passes quickly for you (if that's what you want).
Hospital bag - mum was told to pack tops that open at the front as it's too sore to lift your arm(s) to put them through armholes in tops that don't. And her Ipod was a godsend apparently when she wanted to block out hospital noise, and/or her own thoughts. I'm sure someone else will be along with some more practical advice soon.
Hello all, hello pigleto, I'm sorry about your nodes - I had one positive and the surgeon took about 10 out, all the ones surrounding it and they were clear, which was a big relief. I guess this will mean you will have to have chemotherapy
At least you will be well to enjoy Easter, I had my op a week before Christmas and Christmas is all a bit of a blur. Don't be too worried about getting movement back in your arm - it only took me a few days as I was religious about exercising it in hospital - and although it was uncomfortable it didn't really hurt.
I took books into hospital, dressing gown, any toiletries you like to use, I spent lots of time reading. Baby wipes are handy too.
for hospital: don't forget ear plugs and button up tops (rather than ones that you need to pull over your head). and check out local info regarding food - our hospital has terrible reputation so I took supplies. music is good to get a bit of privacy if you want it.
i saw my genetics consultant this week and it looks as though i probably warrant testing. although, of course, in my area, there's no money for it......it does make me so cross that time and effort has to be spent fighting for funding rather than concentrating on staying/getting well. i went through all sorts of hoops to get herceptin (before it was approved for primary breast cancer) and now it looks as though might have to do that all again to get funding for genetics testing.
Hi. Yes anorak I will be having chemo this summer. My tests came back positive.
I am not sure how I am going to cope with the dcs. I have a two and a six year old and a dh with major spine problems who needs a certain amount of nursing. It is weird because I am not yet feeling ill but I have to plan to be. The family have all been great and they live fairly near to us so will be able to help out a lot.
Thanks for your tips on the hospital. I will be in there for five days so I have splashed out on an ipod. I will fill it up with some good tunes.
Another tip my friend got for when you are in hospital is take a empty toiletries bag with handles, she put her drains in there, she found it was easier to get mobile as she could carry them around and when her kids came in it helped stop the kids from noticing the drains.
Pigleto - I hope the wait is managable. Regarding things for hospital I find eye patches are great, as they never seem to turn off the lights, ipod and charger , lip chap (I also seem to get really dry lips), reading material
my hospital recommended that i stay in hospital until the drains came out due to having a 2 year old at home. pigleto, i think it's worth talking to your bc nurse about how to cope with your family during chemo. i had childcare in place, and a dh who cared for both of us, and it was, i'm afraid to say, a massive struggle for all concerned, even with help at weekends from family.
genetics testing involves a blood test and months of waiting while they look for a mutated gene or two. unless we pay for it, in which case they can turn it around in 3/4 weeks. at a cost £2K. hmmph.
You sound very organised anorak! I was told that some people like shoulder bags for the drains. I took a loverley hospital bag with pictures of drains on the front (yuck!). My arm still hurts and I am really tired. It's horrible and I'm longing to have a bit more eneryy to do stuff with.
sorry about yuor results lots of good advice here. like anorak I made sure I did the exercises religiously as I had limited mobility in my shoulder before the op due to arthritis( i have alot more now as the chemo has helped with the artritis, and incidently I have no psoriosis for the first time in 30 years).
Yuo need to make sure you have lots of help when you come out of hospital,I found I recovered quicker than I thought I would, but I did stay at my sisters house for 2 weeks.
the chemo has been pretty dreadful<but having said that I had my 4 lot last tuesday (yippee half way through!!) and it has been the best so far.The first three times I didn't get dressed til sunday and I 've been up and about every day it feels fantastic as I was dreading it so much after the last round when I only had a handful of good days due to catching a cold.
maryann, it's both. if positive, i'm more susceptible to further bc, and to ovarian cancer, and if positive, it will mean that my dd and my sister & brother have 50% chance they have the gene too.
mary ann, well, our very crazy NHS system means that it is possible that my sister's hospital trust will pay. i'm waiting to find out. otherwise, i have the choice of waiting for my hospital trust to sort it out (consultant has been waiting for over a year and remains pessimistic) or paying for it. if it comes down to the choice, i will raise merry hell with the hospital first.......
I had the genetic test - My aunt was offered it by the centre for life in newcastle as her cancer was extreamly rare. It took 5 months to get the results, initial testing always takes longer, as they do not know which spe,lling mistake they are looking for or which gene they are testing.
She came back positive then it was offered to other individuals with direct links to her ie siblings and daughters. Then when my mum tested positive I was offered the test. We have been lucky in the family as most people are testing negative.
Mine leaves me with a 60% chance of ovarian and a 85% change of breat cancer. I have boys so they will be eligable for testing at 18 - the mutation ios boys is for testicular nad prostate, but in a much lower percentage.
It is worth also pointing oput that the mutation is incredably rare only 1% of all initial tests in people who already have a cancer find it.
Good idea for a thread Anorak - my mum went through a mastectomy about 15 yrs ago and she had no-one to talk to about it really. She's fine now by the way 
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