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Original poster

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

558 replies

anorak · 14/03/2008 21:25

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.

OP posts:
Original poster
anorak · 07/05/2008 23:28

huffpuff I really do understand - you just want the cancer out of you, don't you? But the doctors won't preserve your breast if it makes it riskier for you.

You might end up having chemo after your op anyway if you don't have it before. So why not have it before and see if you can keep your breast?

I remember being told that the survival rate for those having lumpectomies is just as high as for those who have mastectomies - so if you don't have to have a mastectomy, don't have one!

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pigleto · 09/05/2008 16:58

I understand how you feel huffpuff, I was definately of the mindset that they should chop off anything that might have cancer in it straight away.

I thought I would be more bothered by loosing my breast but I have been fine. You can't tell when I'm dressed and lovely dh has been all over me as usual which has helped me to feel normal. The nurses keep talking to me about reconstruction but I secretly think that the wierd malformed lump you get from reconstruction looks worse with your clothes off than the flat patch and scar I have now.

Have you had a second opinion on your treatment? I have spoken to four different consultants so far which has made me more confident that I am having the best treatment I can get, they all gave slightly different advice though.

Anorak I am on epirubicin and cyclophosphomide x4 followed by taxotere x4.

pigleto · 09/05/2008 16:59

Julezboo, the waiting around for test results is really terrible. I hope you have good news soon.

beingpositive · 09/05/2008 22:57

I am sorry to read the number of gals going through this. Being diagnosed at 36 myself, I felt alone and too young to be going through this. Often now i hear of more and more women under 40 being diagnosed. I was diagnosed whilst pregnant. I gave birth to a healthy baby despite all the treatment. I hope there are no other pregnant ladies going through this but i just wanted to say that it is possible to go through this and still have a healthy baby. My support to all those fighting cancer x

Original poster
anorak · 09/05/2008 23:47

Thank you beingpositive. Great that you had a healthy baby

Yes pigleto you are on the same chemo I started with. It made me very sick - by the end of 4 cycles of it I felt ready to give up. It was followed by taxol x 12, which I am just over halfway through. I am finding this much easier to live with. No more sickness.

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pigleto · 10/05/2008 10:57

I was only sicky for the first 6 days with round one. I feel fine atm. Hopefully I will sail through with little side effects (touch wood). I am usually revoltingly healthy, which is partly why the cancer has come as such a shock.

Thanks for the post beingpositive, it is nice to hear from someone who has made it through this. It must have been unimaginably awful to be diagnosed while pregnant. I hope you and your dc are doing well now.

beingpositive · 10/05/2008 12:47

Thanks pigleto and anorak. Yes my little one is just perfect. It was a hard decission when being asked if i should continue with the pregnancy,to the possibly of giving birth to a disabled child through treatment and then on top of it all consider the fact that i may not have been around to bring her up...... Miracles can happen and both I and my dc are well. The only previous comparisons to my diagnosis were that of a handful of women in America.This treatment was given to me and I am so so grateful for modern medicine

pigleto · 10/05/2008 16:45

I have been having these headaches, they are really bad when I get up in the morning and fade to almost nothing after breakfast. I was really hoping that they were a side effect of the chemo. I have just googled. Which I should not do, especially when I am alone in the house.

shit shit shit.

and I was just starting to believe I might live to see christmas. I don't even want to tell my oncologist. I don't want it to be real.

Original poster
anorak · 10/05/2008 16:58

You will live to see Christmas pigleto. Don't google - if you want info stick to the proper recognised sites.

I had dreadful headaches when I was on the chemo you're on. It turned out to be the kytril (anti-sickness medication) causing it. Try a different anti-emetic.

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Vev · 12/05/2008 08:10

Pigleto - I too suffer from horrendous headaches - presumably a side effect of the meds I'm taking! I've been advised to take codeine when they're bad, which is usually first thing in the morning. I try and not google 'cos it turns every niggly little thing into something scary.

lalaa · 12/05/2008 12:55

I had big headaches with chemo too. Epirubicin is a pig of drug (but does the job!)

Tickle · 12/05/2008 22:23

Hello girls - just checking in

Good to hear most of you are soldiering on without too many side effects - I can sympathise with bad headaches as I used to suffer from migraines when younger... ouch

Keep it up

xx

TheMadHouse · 13/05/2008 13:29

Hi Ladies

Just thought I would pop in and check how everyone is.

Pigleto - I hope the headaches are better

Anorak - How is the arm

Bladebla - good on you

Anyway little update I saw consultant re anemia yesterday and I am having a colonoscopy nad gascoscopy tomorrow which might explain things.

I am also seeing the plastics team on Thursday am to discuss reconstruction.

Once my iron levels are above 10 I will be booked in for my ovaries and tubes to be removed.

pigleto · 14/05/2008 09:03

Thanks all. Dh disabled the internet so that I couldn't go around scaring myself witless . My hair is starting to fall out and I am shedding everywhere.

Lovely day, which I am spending with my toddler in the garden with a sandpit.

BlaDeBla · 14/05/2008 10:51

Well, it looks like a bit of lymphodema for me... It's not very nice and really quite uncomfortable. I also have some fluid on my back which needs looking at. I hope it can be treated locally.

I spoke to the national domestic violence helpline yesterday, about my mum, because my dad has been threatening her. Today I spoke to her and she said that my dad apologises for his behaviour (till he does it again). Anyway, he has never apologised for anything before, so perhaps that's not a bad thing.

Our living situation is so awful, what with my dad being so badly behaved and my uncle interfering too, and most recently some neighbours who are turning out to be really aggressive. Not good for cancer I don't think.

Original poster
anorak · 14/05/2008 12:17

Lymphedema is a complete pita. BlaDeBla, prepare to be swaddled in bandages night and day and unable to make a sandwich or do any housework. I am typing this with one hand.

pigleto, I didn't bother to clean my house till all my hair had gone, it's not worth it.

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misdee · 14/05/2008 12:19

Anorak, i want you to know, that despite being with child i will still be taking aprt in RFL next month, and I am going to be filling in my message thingy for my back soon.

Original poster
anorak · 14/05/2008 20:01

misdee, that is wonderful of you, but if you didn't feel up to it it would be quite understandable you know.

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BlaDeBla · 14/05/2008 20:32

Oooh anorak, I can't wait!! I've been quite upset about it today, and to boot, I also have a seroma on my back - 7 months after the operation. I didn't know it could be so painful, but I've only got lymphodema-lite.

Original poster
anorak · 15/05/2008 13:29

I've just googled seroma as I didn't know what it was. Is the seroma painful or do you just refer to the lymphedema?

It's interesting, I was chatting with my lymphedema therapist. She says insurance companies wouldn't pay for lymphedema treatment until recently because they classed it as "purely cosmetic" Those of us experiencing that know very well how wrong this is! Anyway they do pay now, even though half the doctors still don't seem to understand much about the condition and its treatment.

I don't want to depress you more BlaDeBla, but (forgive me if you know this already) I have learned that lymphedema is for life, and that the sleeve will have to be worn every day, and the bandaging done most every night for life just to keep it under control. It's a big adjustment.

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TheMadHouse · 15/05/2008 14:03

Afternoon all

I am back from the hospital regarding the mastectomy and reconstruction and the platics consultant was lovley. If I love 18kg then I can have the transflap one where they take it from your tummy and give you a tummy tuck at the same time. He said due to my body shape I am an idea candidiate. He also reconds that I will lose another 2kg from each breast during the surgery.

If I do not manage to lose the weight then it is implants. I can not have the back muscle ones done as my body shape is not ideal for it.

So it looks like it will go ahead october time ish if I start losing now.

I am back to see him in 4 weeks and he will take photos and show me how I might look - scars and all.

I am going to try and lose the weight as it is going to be a long operation at least 12 hours so being fitter is better.

Also had my gascoscopy and colonoscopy yesterday and colon adn bowels are perfectly fine. I was a little worried as the BRACA gene increases risk of bowel cancer. I have a large hernia, which i was possibly born with which seperates my stomach, which explains why I am easily sick, but it is also fine.

The doc took some biopsies of my duodenum, but just to check as it is a little swollen.

lalaa · 15/05/2008 14:07

Blimey, TheMadHouse, that sounds extensive! Feet up and relax......

On the losing hair issue, I can't remember if I said this before, but we were advised to shave off my hair in front of dd (who was 3 at the time) so that she could see that Mum and Dad were OK with it. So we did, and, it was fine.

huffpuff · 15/05/2008 14:16

hi all - hope you are all doing well.

I am off to hospital next week to have lymph nodes taken and then will start chemo.

Doing Race For Life on 28th May - will probably walk it though!

Am feeling so so so so tired and not even had any treatment yet!

Have been invited to join a young woman's support group at my local hospital which i think i might go to. Feeling a bit lonely atm even though i've never had so many people text or phone me.,.................

Original poster
anorak · 15/05/2008 20:13

TheMadHouse would you mind telling me your height and weight please? So I can get a rough idea if I'm going to need to lose any weight. Do CAT me if you'd rather not say on here.

huffpuff the stress alone will tire you out and chemo will make it worse. Please don't do that race if you don't feel up to it. Wait and see how you feel on chemo. Your health is more important than doing the race.

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lalaa · 15/05/2008 21:07

huffpuff, i remember being completely knackered after my op - it's the general anaesthetic.

good on you for signing up to race for life. although, as anorak says, listen to your body on the day. I finished chemo in March 06 and did the Windsor 8K (Running for Women) in mid-September. Gave me something to aim for, and a reason to get back into doing some exercise. That training was the toughest training I've ever done, but it was worth it when i finished the run! and i found, having been through all of the cancer treatment, i had masses more determination. Still find that now, actually.