Loads to update you on, it can really knock the stuffing out of you for a while can’t it. But joy commeth in the morning so I am told…
Had MX 27th Jan (Haxted visited me Bless her and thanks for all your wishes that went with me) After just 2 days I accidentally pulled out my drains ooocchhh … so left Poole Hospital to rest at home.
I suppose this is now called a seroma as within days the boobey I had off (which was part of a 40 DD team) has been replaced with one gigantic (tight) swelling which continues under my arm and provides a bigger cleavage than I used to have, actually looks like I have had a breast enlargement with a nipple removal. Advised at my follow up with surgeon last Monday that best left to go down on its own, but very sore and uncomfortable to sleep. Still taking pain killers 4 hourly. Was not prepared for the total loss of feeling under my arm, breast and upper arm which has a burning sensation which Haxted warned me about as the nerves are tender. I have had an anti depressant that helps with this nerve pain perscribed but not sure if I should so there or bear with it.
Been very tired not yet got back to work which is unusual for me prefering to stay under the duvet most of the day. Never been here before and met my match with this one but still upbeat and positive much of the time.
At the pathology meeting was devesatated to find out that 11 of 13 lymph nodes removed were infected and a 1 inch tumour found (which up to now had no idea a tumor existed as it did not show up on anything previously). Surgeon now doubtful that FEC x 6 worked sufficiently for me so appointment tomoz (Tuesday) for new clinical onc Dr C… at Poole Harbour to decide if radiation and further post mx chemo required possibly TAX and in what order.
The further chemo is another insurance policy they call it as if Fec did not work it may be in micro form in lymph and blood system and go further BUT as all of this is IF and BUT and the cancer at present HAS all been taken out I am assured - difficult decission to make for more chemo as I was so ill will FEC. They tell me the scales are do it now and zap the blighters whilst potentially small or wait and see if anything develops and do it then as can only have the treatment on TAX once only.
I am on Arimidex now for next 5 years as I am HR2 negative and asked if I would take part in a new trial for REACT.
Have to also see Lymphadema nurse as High risk of this occuring too.
Been given follow up date in July with surgeon who has also organised some base tests.
So What’s the Side effects of TAX girls? if I agree to have it now
I had 4x tax and it was rotten - but as we always say doable… like any chemo i think some people have a worse time on it than others - the first cycle was the worst for me as i managed to get every side effect on the list but it did mean from then on i had all the appropriate meds for the later cycles…
Bit confused by the tumour - do you mean there was an unexpected tumour in your lymphnodes…? I know my 5.5cm tumour at diagnosis wasn’t on the mammogram but was on ultrasound and that was how they could guide the biopsy…
I also suffered from nerve pain… and daftly continued suffering for 18 months after the first mx… i mentioned it to my gp last month as i now had both mastectomies doing it… and he has put me presumably on the same tablets your doc has suggested…
I am sorry that so many lymph nodes were involved… to be honest if i was you i would go for the extra chemo now…
Great to have you back but sorry to hear about the nodes. Getting the results post op is always a difficult bit.
The problems you have with your wound and surrounding area should improve with time. You need to give yourself the time and not rush back to work though. Your body needs all the energy you have just to repair itself especially if you have more treatment to come. I had my MX in September with rads afterwards and I’m just going back to work in 2 weeks. You might get the feeling back too as the nerves heal. That does cause some pain so keep up the regular painkillers.
For what it’s worth I agree with Theresa about the extra chemo. Best to nip it in the bud than chance waiting if lymph nodes were affected. Tax can be horrible but it’s only for a short time and most of the side effects can be managed. I had pain in my joints and felt very tired after each session. Also lost my eyelashes and eyebrows but they grew back very quickly afterwards. Nails are brittle but look normal enough. I would do it again if I had to.
Sorry to hear you’re having a rough time of it. I had a double mastectomy and developed seromas both sides. They took quite a while to resolve particularly on the side where I had the axillary clearance but some women find they resolve quite quickly.
I had been a 36 FF and I understand from my surgeon that us women that were larger busted are more likely to get seromas because of the huge space left.
I did have my drained and I think that it yours is very uncomfortable I would contact your breast care nurse and talk to her about it.
I had 9 out of 17 lymph nodes infected and had 4 x FEC before surgery and then 4 x Taxotere after and then Rads. I was very will with FEC too and in fact lost two and half stone in 8 weeks as I was so sick. I totally agree with Theresa and Jan that’s it much better to go for the full works now. I wouldn’t hesitate in having taxotere. I had 4 lots of taxotere and it was hard going but I kept thinking to myself that it was for a limited time. I gained a lot of strength from knowing that other women had been through the same.
I had a lot of burning and shooting pains to start with after the operation. These gradually settled. Now nearly 8 months later I don’t have sensation in parts of my arm, under arm and chest but my surgeon had told me that it was very unlikely that I would. That’s okay though.
Your body has a lot of healing to do so do take care. The exercises are really important in helping to keep the shoulder mobile and I still do those 3 times a day as I stiffen up quickly when I don’t.
You will get through of all of this. It’s such a long slog of treatment. I do feel very glad though that there is so much treatment available to treat breast cancer.
Thanks for the replies and info - Jan take it easy yourself going back to work, is it a demanding job ? I already have no hair, eyelashes or eyebrows from the FEC ended Dec 31st - apart from a thin layer of grey fuzz on the top of my head I would not yet call it hair as the first lot rubbed off on my pillow - this seems a bit stronger now - but I will try not to get used to it if the Tax takes it all away again.
Its good to witness you guys moving on Jan working again, Haxted having a break from hospitals and a holiday at last, cant wait till its my turn but you guys deserve it - its difficult to imagine the treatments ahead but you have done it - well done
I went to the new onc Tuesday and he drew off 1000 cc YES one litre in fluid from my seroma - he said it was a record unless you know different ?
Its now confirmed they are doing rads first in a few weeks time then 6 x TAX after as there were so many lymph nodes infected. And 6 x makes it sound scary that they think I need this many as its doubled from the original multi meeting.
They agree its best for me to take the anti depressants for nerve pain (not for the depressing feeling that my tummy now looks bigger as I can see it now) took them last night and could not get up this morning are they designed to get you to fall off your perch.
Really Hope you guys are enjoy the time feeling better
Elinda45 - thanks for the reassurance too - gosh both sides you are brave - how long did it take for the nerves to stop hurting can you remember ? Gonna take your advice and keep up the excercises - thanks
Gentle hug to all as it still hurts a bit. Dee X
Going to be just Dee from now as the other Dee has gone, (originally called by my double dee’s)
Dee - glad to see that you now have the next stage of treatment planned it does sound daunting at the start but we will be here every step of the way if you need us… x
Did they say how many rads you are going to need? It seems to vary so much from hospital to hospital… I had 20 with the first 15 using the bolus (a special jelly like covering they use to direct more of the rads to the surface layer because of us having IBC…)
Interesting what you say about larger busted ladies having more problems with seromas…
so pleased to hear you had that seroma drained. That is a lot of fluid. The most I had was almost 600 and I know how uncomfortable that was.
I’m trying to remember about the shooting pains and also a sense of burning in my upper arm. I think it went after about 2 - 3 months with the odd shooting pain after that. It was gradual so it’s difficult to remember. It was definitely worse in the first month or so post op. I took painkillers as I couldn’t cope with anything else as I got too spaced out.
I did also have trouble lifting my arm until about 6 weeks post op when all of a sudden it got better.
I remember someone posting that taxotere was a rolls royce of chemo and I did cling on to that during my treatment.
Wow! 1000cc is a lot. It must have been very heavy and uncomfortable. You do have a long haul ahead of you but it will be worth it and then it will be your turn to move on too. I hope you manage to get some good days in between treatments where you can have nice days out. I found it helped to have something to look forward to.
It is interesting that we IBC ladies were all big busted. I was a 32FF so being single breasted takes a bit of getting used to. Finding bras was bad enough before but it’s a nightmare now. I have a very small frame so being flat wouldn’t look too wierd. If it didn’t take so long to recover I’d ask them to take off the other one too and I could choose what size prosthesis to wear. (Sorry Elinda you must think I’m crazy)
I’m feeling guilty now because I know I’ve been very very lucky getting treatment before it managed to get to my nodes and now I’m well enough to go back to work but I’m dreading it. My job IS very demanding. I was struggling before this illness and I’m not sure I’ll be able to cope. If I could afford to I would give up the job and look for something less stressful but I’m the main breadwinner and we still have a huge mortgage. There’s also the fact that I’ve got 33 years service and if I resign now it will have a massive impact on my pension. Unfortunately I’m too young to retire now (48yrs). I’m also pissed off that the odds are against me being well enough at 60 to enjoy a retirement. Sorry for the moan ladies. I know many of you would be very happy to be in my position. Just having a bad day. Tomorrow I’ll pick myself up and get on with it.
Jan - please don’t worry this is the one place where we can all say how we feel and be honest… do you work somewhere that it would be possible to take early retirement on health grounds…?
I had my second mastectomy in sept and it was so much easier because no lymph nodes were involved i had full arm movements back after only a fortnight… (basically as soon as the drains were out…) and i’m also hoping that if i can get the nerve pain sorted with the meds i am now on i will also be able to start wearing a prothesis and bras again… (i havn’t been able to since the first op…) i was a 42d before all this happened and would go for a smaller size now both have gone…
Hi Dee
You have surely been in the wars, don’t expect too much of yourself as it is early days yet but, you will get there and you can do it. WOW what a seroma record you have.
I had 6 Taxotere so I can comment and say that it’s doable, I suffered from every side effect going whilst others found it much easier, but ALL my side effects were managed with other medication and it was only for about 10 days each cycle. With Theresa, Elinda and Jan, I would say go for it, better to get it now than later in my opinion. It will be only for a short time, although for you it will seem like longer. Taxotere is considered the “gold top” of chemo’s, and now I can say that I am glad that I was able to have it as I feel it gave me a good chance of getting rid of this IBC.
I was warned about the nerve pain, and unfortunately I still have it to a degree now along with various other aches and pains (ribs and arms especially) but we manage as best we can, and again for some it might not be like this. I had my mx in Nov 08 and still have numbness underarm, I don’t think this will ever change but have learnt to accept it, it isn’t really a problem.
The Tax may not disrupt the hair growth again, some on this forum have found after finishing FEC and starting Tax that their hair was growing.
I am also a big busted lady, at 36/38 E/EE/F (depending on the maker of bra) it is difficult to cope with one boob and I have OCD regarding symmetry – well that’s my excuse but I now look so odd – can’t wait for reconstruction. I barely wear a bra simply because it is too uncomfortable with all the folds of skin which look like sausages that they have left me with, presumably for reconstruction. If I wasn’t going to have reconstruction I would need another operation to get rid of all this and make me flat.
Jan you must try to make the most of your weeks left before your return to work, is it not possible for you to cut down on some hours? I know sometimes this is difficult and is neither financially or convenient.
Hi - went to London during half term to see my parents with my 13-year old daughter so missed all this!
Sorry to spoil things but I’m not big-busted so that rules things out for a common feature for IBC ladies! I’m only 34A & at present, my remaining boob has shrunk so that the prosthesis they gave me is bigger than it! Mmmmm.
Dee - you must do as you feel led regards Taxotere chemo - but would suggest they have your best interests at heart and wouldn’t propose it if it wasn’t your best chance. Everyone’s reaction is different but even if you were unlucky and reacted badly, it’s not forever… Most of us here have had it and here we are afterwards!!
Try giving yourself a goal, a treat (a really goood one!)to aim for at the end of treatment (whatever that may or may not include!)? It gives hope for a future even when the present underneath the duvet seems glum and feels hopeless (it’s not!). I had MY mind on the carribean…for now, 4 days in Warwickshire next week will do 'cos at least I can go SOMEWHERE. I appreciate it all the more after the last nine months…And Jan - what about building in a treat for yourself after re-starting work? You deserve it after the nine months or so you have had too!
My son has dreamed up a Virtual Carribean for me - a warehouse kitted out like the Thomson TV ad with sand, palm trees and loungers etc. Not sure how to manage a warm, turquoise sea - paddling pool might have to suffice… but No airports, no insurance just warmth, peace, privacy and pina coladas. Perhaps we should create it as a post-treatment Retreat Centre…
I hope you enjoyed your half term visit. Your virtual Carribean sounds like bliss! Can you invite friends along? lol. My OH and I are settling for a week on the Isle Of Arran in the short term, taking the pooch with us for some nice walks in the hills. Long term I still hope to visit my friend in Philly and later this year we plan to visit my cousin in Spain.
Hi Peacock - Do you have long to wait for your reconstruction? You sound very uncomfortable the way things are at the moment.
About returning to work, I’m consoling myself with the thought that if full time doesn’t work out I can have one rest day each week without losing too much salary. I’m very conscious now of the need to have a life outside work and don’t want to work so hard that I have no energy left for anything else.
