Breast Cancer Now Forum

Hi Karen, I would love to meet up. Why don't you pm me with some ideas of when and where. SJB, how are you doing? How's the docetaxol going? Hopefully you can see the light at the end now. If you fancy meeting up too pm me as well and we can pick a date and venue to suit everyone. ... View more

I am on tamox having been diagnosed 2 yrs ago aged41. I was recently found to have low vit d, and never knew it was linked to breast cancer! MyGP said because my calcium levels are ok she couldn't prescribe anything as the prescribable tablets all contain calcium. I found a brilliant product available online from Amazon or Holland and barrat which contains high dose vit d, it's called d-lux and comes as a spray which you spray under your tongue. It comes in 1000, 3000 ( which I use), and 6000 iu strengths. you can save quite a lot by bulk buying too. I am pleased that this is something I am doing that may also help reduce recurrence! X ... View more

Theres always a choice, you dont have to do anything you dont feel comfortable with. It was put to me like this: As it stood my rumour was to advanced and I would need a mastectomy. I had already accepted this in my head although having read about reconstruction I knew that not having any breast tissue would make reconstruction surgery more difficult. My main concern was delaying the removal of the tumour by having chemo first, I asked directly whether this would effect the outcome and the surgeon said there was no difference in outcome whichever way round you have chemo and that they try to encourage women to have breast conserving surgery weheverer possible. He said also that if it was his wife or sister he would recommend this option. I was told I would need chemo and radio whatever way round I had treatment because I had multi-focal disease and at least 3 nodes involved. I don't regret having it done although 18 Months from finishing treatment I can give you more info with the benefit of hindsight. The good things are that although my chemo didn't quite shrink the tumour enough to get away with a lumpectomy i have still got a reasonable breast, if a lot smaller than the other and completely different shape. To symmetrise this would be a simple breast reduction to the other breast rather than a more major reconstruction which might involve implants or removal of flesh from other parts of my body. However to have any breast conserving surgery you need to have marker coils inserted pre operatively and I also had marker wire inserted the day before surgery, which was similar procedure to the original biopsies I had. So If you don't like having things like that done under local anaesthetic it's something to bear in mind. No markers would be needed for mastectomy. Also one thing they didn't tell me was that If you have chemo first your cancer staging is what they call "clinical staging". This means that it is an estimate only because they can only really know the true extent of your original disease once they do surgery and it is examined under a microscope and looked at to see it's actual (rather than what the scan says) size and spread. This goes for lymph nodes too because they don't always show up on scans so they can never really tell how many are truly involved until they are removed and tested. In my case because I had chemo first which may have wiped out some of the original cancer in the breast tissue and nodes, they can never be sure of the true extent of the original disease. This makes my staging uncertain, it could be stage 2 or 3, they are not sure, and as a result I had more extensive radio. I may have needed this anyway but they gave me neck radio and boosters just to be safe. I don't regret my decision at all, I just need to pluck up the courage for the surgery to the other side!!!!I hope this helps. It is difficult to know what to do. I was 41 at diagnosis, so similar age to you. If you don't understand anything I have said or want to ask more please do, I am happy to talk about anything. Xx ... View more

The main Side effect I got with the steroids was facial flushing and puffiness. Just be warned about aches and pains and have some decent painkillers at the ready. Mine used to be that I was fine first few days, them on thirds day ashes and pains would start, but painkillers helped. Just take it easy, rest up and look after yourself. You shouldn't feel sick though, I felt so rough on FEC, thata fee aches and pains were nothing. I didn't feel ill at all with docetaxol. Good luck. Let us know how you go. Xxxxxx ... View more

I actually found the taxotere easier to cope with as the FEC made me so sick and I just had pain and muscle weakness with taxo. If I gaff to do it all again Iwould rather have taxo. Xxx ... View more

Hi linserella, your story is almost identical to mine. I was diagnosed Feb2012 aged 41 and had fec-t chemo first. I too had scans which showed no change and possible increase in size half way before I switched to docetaxol. However after the 3 docetaxoli had another MRI which showed that the affected node in my Axilla had dramatically reduced and the one in my chest had completely resolved. I went on to have partial mastectomy, 4 weeks of rads about 7 weeks post op and now on tamoxifen. So fingers crossed the docetaxol will have a good effect for you too, and even though the scan said it hadn't shrunk the tumour, at surgery the surgeon was able to preserve enough breast tissue to leave me with a passable, if much smaller, breast. ( he wants to reduce the other one to match but I can't quite facethat just yet!) so good luck, and remember just because the scans say nothing has changed when they get in there and have a look it may be better than they thought. Xxxxx jo ... View more

Just to reassure you a bit , I developed lymphoedema about 9 months after surgery, and I also had a lot of pain and heavy aches feeling, and my wedding ring got so tight I couldn't wear it, so had a new one made to fit over my swollen fingers. I rang the BCN who told me to come straight in, and she thought I had lymphoedema and cording as I couldn't,t lift my arm high or fully straighten the elbow. She sent me to a specialist lymphoedema clinic where they measured it to be 15 % swellinG, mild but significant enough to treat. THey fitted me with sleeves and gloves but because I am an ICU nurse I was not allowed to wear the sleeves/ glove at work due to infection control. I wore them outside of work, and particularly when exercising, but was only really wearing them 3 days a week. I then went to see a private lymphoedema specialist who used deep oscillation therapy on my arm. Gradually I wore the sleeves less and less because I found them so uncomfortable, and when I went back a few months later for a follow up assessment at the lymphodema clinic, I wasn't wearing them at all. My swelling was now down to 5%, and that was without wearing compression garments, so I think either it got better on its own, or the oscillation therapy did the trick. Either way, my point is, that no matter what you read or are told, lymphoedema can get better. I was told it would never go, it could only be prevented from getting worse, and my new wedding ring is now hanging off my finger!!!!! Xxx ... View more

Hi, I had a red/purplish blotchy rash start in my radiotherapy area, particularly under the operated breast and round the nipple where I had 3 boosters, which started about 6 weeks after my rads finished. I had gone through the predicted skin soreness and peeling that they said might happen during and just after rads, and my skin had healed perfectly. My surgeon biopsied the rash and found it to be caused by chronic deep dermal ( the deepest layer of skin) inflammation. It was very sore and I got a heat/ burning sensation coming from it. I was also getting a lot of breast an axillary pain, so they referred me to a dermatologist and a chronic pain specialist. The dermatologist was baffled and sent me to two different London specialist dermatology clinics for second opinions and tests. The consensus of opinion was that I had a chronic radiation dermatitis, the initial flare up of which would be the worst, followed by less intense flare ups indefinitely, possibly for the rest of my life. They gave me steroid creams and a natural menthol cooling cream. I now have milder flare ups, as they predicted, and don't need the steroid cream any more. I use something called " derma cool" which is very soothing. My onc initially said it was nothing to do with radiation when I spoke to her on the phone, but she eventually saw it in the flesh and had to agree that , though rare, people did sometimes have chronic reactions to radiation damage. Hope this helps, good luck with sorting yours out. Xxxx ... View more

Excuse all my spelling mistakes, am sending from my phone which keeps making strange words up!!!! Where are you getting treatment by the way? At Maidstone? X ... View more

Sorry you're finding the taxol difficult. I found i was fine for the first few days then on day 3 post treatment the pains would come. Made worse by the filgrstim injections. I got my onc to reduce the dose in the end add my blood counts were all ok. I also took voltarol as well as paracetamol and codeine but then needed omeprazole to counteract the heartburn and stuff to help with constipation from the codeine!!! I remember living each day from one pill to the Next as all that was on top of the anti sickness pills and steroids!!!!!! All completely alien to me add I Garr popping pills usually! Anyway good luck. Hope this cycle is more bearable for you. Xxxx ... View more

Yes I read that too about tea and I am cutting it out, just drinking herbal and fruit teas and the occasional decaffeinated ( well you got to dunk your biscuits in something!!!!) I am taking something called spatone which is naturally iron rich water which they say is much more highly absorbed than iron tablets and yes you have to Mix it with Orange juice. I am due to have bloods done mid April some time so we'll see if it's worked!!!! Xx ... View more

Would love to meet up sometime Sue. There's another lady I met through a look good feel better session who was going through treatment at the same time as me who lives in tenterden, so not far from you. I know I found it a tremendous support to meet up once a month or so during treatment to compare notes and talk to someone else going through the same things. Good luck with your final chemo session. How have you found it? Have you had many side effects or any problems with it? I hated FEC. Made me so sick and therefore found taxol easier to deal with as I just got pain and extreme muscle fatigue ( could barely walk after last one). But felt that was easier to deal with than vomiting!! How come you had to have chemo first like me? Mine was that way round as my tumor was multi focal and too big and they thought that if I had chemo first i might get away with lumpectomy. It didn't work well enough for lumpectomy but they managed to preserve a decent amount, so now I gave one Big Boob and one small one! I am supposed to have the other one reduced to match but can't face any more surgery at the moment. Look forward to chatting on here for a bit and maybe a meet up when you're feeling up to it. Have you met any one else going through treatment? Like I say, I found it really helpful to have someone to talk to about it all , any way take care and look forward to hearing from you. Good luck. Xxx ... View more

Hi all fatigue sufferers. Like many of you I too have had chronic fatigue, which varies in intensity. I had fect chemo march to july 2012, then quadrantectomy and reduction surgery july 2012, then 4 weeks of rads and now in my second year of tamox. I have had recent gynae issues with tamox, no periods for almost 2 years but they seem to have decided to come back this week as I am now having the mother of them all at the moment! some times the fatigue is not too bad, and other days I can barely function.   as a tip, my GP did a load of blood tests and I was found to be severly iron deficient and vitamin d deficient, both of which cause fatigue and muscle weaknes and general aches and pains. it is worth getting these checked out at the GP if you haven't already, especially the ferritin (iron) as you can be iron deficient and not anaemic ( low ferritin, normal haemoglobin), and still have all the symptoms of anaemia.   Hope this helps. i am now on high dose vit d and iron supplements. i take liquid iron as the tablets really upset my guts!   xxjo ... View more

Update on the periods! I seem to be bleeding as of this afternoon but it's weird cos there is nothing on the pad but loads of Clots when I wee. Sorry for the graphic description but I am not Sure whether this is normal or not? I was also having the most horrendous return of the hot flushes up until about 3 weeks ago then they just stopped. I thought it was because I had cut out caffeine by swapping from black tea to Green tea, but I just found out Green tea gas as much caffeine in it as black tea, so it's not that! So I am now worried that a sudden cessation of flushes together with return of bleeding could mean tamox is not working? Unless the bleeding is coming from somewhere else? X ... View more

I had vascular invasion and lymph node tumors, one quite large, but no one ever mentioned checking tumour markers!!! It never ceases to amaze me the difference in treatment and surveillance offered at differnt hospitals. You would think it would all be as standard nationwide wouldn't you? ... View more

Hi Bobbie, Sounds horrible. Just when you think all the anti sickness pills are behind you!!! I really feel for you. I am not too bad at the moment. Had a really rough end to last year and beginning to this but the past 10 days or so I have been feeling a bit better. I had a resurgence of the most horrendous hour flashes after my laparoscopy in January. Couldn't sleep, kept feeling like I was going to explode. Add that the the pelvic pain and nauseai was getting And I got really down. But following advice from one if these forums I cut out tea(don't drink code anyway) and touch Wood the hot flushes have stopped. Still get the pains and nausea but even that's improved a bit so there's hope for me yet. Really hope Docs can sort something out for you. Xx Jo xx ... View more

Poor you bobsicle. It's not surprising you are depressed. It's horrible when you just seen to get one thing after another, as if treatment isn't bad enough, then getting lots of other little things on top just add insult to injury. Out of interest, has the Doc prescribed you stemetil ( aka prochlorperazine or buccastem)? This is an anti sickness drug which is also used for dizziness and motion sickness which are some of the effects of menieres. If not it might be Worth asking for it as it is quite effective. Hope you feel better soon. Xxxxx ... View more

Hi Penny I finished treatment Oct 2012. I think it's tamoxifen that's causing the problem but the good news is my little cocktail of goodies plus the iron supplements I am on seem to be doing the trick. I too had taxotere (FEC-T) but I was constipated with theFEC bit too. Its also interesting to read that you have osreopenia as I too had a dexa scan which showed thatas well. But they gave me vit d not calcium as my d levels were low but calcium was ok. I have recently also been found to be extremely iron deficient so I am now on iron too. X ... View more