Breast Cancer Now Forum

LindaH · ‎10-06-2011

I was interested to read the article titled 'Lifestyle After Breast Cancer' in the latest BCC magazine, especially 'Plant-based Oestrogens. I started to take Red Clover Blossom from the age of 40. I took it for over ten years. I took three tablets every single day. There is no history of Breast Cancer in my family at all, yet at the age of 51, I was diagnosed with high grade DCIS.....which resulted in me having a mastectomy. These 'herbal medicines' are not regulated by the medical coucil in England. Nobody really knows what they are taking because the full information about herbal medicines is not available. These medicines are not tested. I am convinced taking Red Clover Blossom was the cause of my DCIS. Linda

LindaH · ‎30-03-2011

I have been on Tamoxifen for what will be 4 years in July. I had a chat with my GP last night, telling him I hate taking Tamox. He thought if I have a chat with my specialist when I go to see him in August, they may let me come off the drug altogether. When I first started taking it in 2007 for the best part of a year I was so poorly, I could have crawled into a corner and stayed there. The symptoms did ease, but I have undergone two surgical investigations because of intermittent bleeding, other surgical investigations because of blood in my urine and each time I am told it is a side effect of Tamoxifen. I am constantly lethargic, hot sweats, swollen stomach...... I am determined enough is enough. I really cannot take much more, so, watch this space...as they say... It's been interesting reading other peoples views on this drug. Linda

LindaH · ‎15-02-2011

Thank you everyone, I'll have a look at the supermarkets first before I spend money I haven't really got....thanks Linda

LindaH · ‎12-02-2011

Hi 50something, This comment may or may not help you, but there is no history of BC in my family at all. I have never tried HRT. I had my only child at the age of 38. In 2007 at the age of 53 I was diagnosed with high grade DCIS. What I'm trying to say is, it seems to be something that just happens. OK maybe lifestyles can be involved, but there's no real proof. I've searched and searched trying to pin-point why.....but never find a solution, so I've let it go. Linda

LindaH · ‎12-02-2011

Hi, Not too sure which post box this should be placed in, but I thought with the fact that Tamoxifen is causing my night sweats, other ladies may be able to help me. Has anyone tried this duvet? Before I spend over £100 buying it, I wondered if just the duvet alone is enough, or do you need to purchase all the bedding? Plus, can you put a cover over the duvet, or does it decrease the efficiency. Would love to hear other opinions please. thanks Linda

LindaH · ‎12-02-2011

Yes I found I had quite a thirst and also lost my sense of taste *food wise* and I've been on Tamoxifen 4 years. It does ease, but never seems to completely go away. Linda

LindaH · ‎19-01-2011

I can also relate to sinus problems since being on Tamoxifen (coming up to 4 years on Tamoxifen), but didn't even think about attributing it to being a side affect of the drug. My GP gave me Nasonex, but I don't really like using it all the time as it contains steroids. I am hoping to speak to my GP again soon because since having a cough and cold over Christmas I've been troubled again with sinus problems and constantly having to swallow because I feel there is mucus in the back of my throat all the time. Goodness, the things we have to put up with 😞

LindaH · ‎02-10-2009

I wrote to Pals and they have since phoned with an apology. My letter is now being passed on to the Head Of Mammography Dept and he in turn will be intouch with me. I had my Mammogram Tuesday just gone, so just awaiting results now. Thanks to all who replied, I feel I've done the right thing. Linda x

LindaH · ‎26-09-2009

Thank you everyone. You're right, I need to complain, or this will just eat at me and I'll end up getting stressed over it. Thanks again. Linda

LindaH · ‎25-09-2009

Hi, I just don't know what to do, I'm in a bit of a quandary and I guess my real fear is repercussion. I went to see my consultant in May of this year (I had a Mastectomy in 2007 and now see him once a year). At the time of seeing him in May, I discussed the possiblity of a recon, so he said he would call for me to have a mammogram on the remaining breast. May, June, July, August came, but still no call up for the mammogram. I rang my consultants secretary a couple of times during the months mentioned and she confirmed that I was on the list (Must be one hell of a list). My consultant's secretary decided in the end, to give me the phone number for the Mammography Dept. I phoned...."No, you're not due a Mam until 2011"...."Oh! OK" said I. Then, thinking to myself, I was sure the consultant meant me to have the Mam sooner than 2011, so again, I phoned his secretary. "You're on the list" OK, phoned the Mam Dept again....."I'm on the list".... "No you're not".... "Well, I should be".... "Hang on"....."Right, you had a Mam on both breasts in April".... "WHAT!, for a start, I've only got one breast and secondly I did not have a Mam in April"..... "Oh, someone has written on your notes that you had a Mam in April, sorry, yes you're right, you should be having one now, THESE THINGS HAPPEN" If I hadn't kept phoning and insisting that the Mam should have been when the consultant allocated the slot in May, I would still be waiting. I just don't know what to do about it. Should I complain to Pals, but I will admit to being frightened that there will be repercussions for me if I do complain. Fortunately, I am a strong person....a bit like a dog with a bone....I won't stop until I get the answer, but of course some people would just let it pass and this is how the BC screening gets missed. Please could I ask advice? What would you do? Thanks Linda

LindaH · ‎03-09-2009

Hi Ruby, Sorry I've not been able to get online since August. This is it really, I don't know what kind of recon to have. I'm bothered about LD because my back is bad enough - pain wise, without adding to it. But, I had a caesarian section 17 years ago, so I kind of get the feeling I may not be able to have anything taken from my tummy, plus, my other boob is large...ish, so I guess I might be better having that made smaller.....it seems to go on and on. I just wondered how far I would have to travel away from home or are there some good surgeons in my area? Thanks again Ruby

LindaH · ‎15-08-2009

I'm two years past Mastectomy now and wanting to have a recon June / July next year (I say june / July because I work in a school and don't want to take too much time away). As anyone had a recon in the Lancashire area? I live in Blackpool and don't really want to travel too far away from home.

LindaH · ‎09-05-2009

I totally agree with the idea of a support group. I could not for the life of me understand why I was losing a breast when I hadn't found a lump.....it was crazy to me. I do understand the need for a Mastectomy ...well...I think I do, or is it just a case of the cheapest option ie; would radio be too expensive to give someone with DCIS. Mine was high grade DCIS and more was found in the breast tissue, but I cannot help wondering if the breast could have been saved....I'll never know. I had to find out all my information online, all I was given was a leaflet telling me about Calcifications at the main breast screening unit, thank goodness the hospital I actually attended for my Mastectomy were more helpful, but I still couldn't help feeling that everything was taken out of my hands, I was given a path to follow and because of my state of mind at the time, I followed that path, without disagreeing in anyway shape or form. Yes, I do think DCIS needs to be more supported, especially when we lose a breast because of it. Linda

LindaH · ‎09-05-2009

Hi, Mine was high grade DCIS in 2007. I had a WLE with no clear margins so the Mastectomy was performed within a week of the WLE. My Oncol said he was satisfied that removing the breast was the right thing to do, but did not want me to even think about removing the healthy breast. I rang the BC helpline and asked to speak to someone who had, had DCIS. They put me in touch with a lady from Scarborough who had her DCIS .....TEN years ago.....She had also had a recon a couple of years after her Mastectomy. The thing is, if she was ten years down the line with no problems on her remaining breast, well, that gave me hope that DCIS need not be a complete fear. New facts and figures are being reported all the time, so I am just getting on with life and trying not to worry about BC at all. I've been on Tamoxifen for two years now and hopefully that will help me. Linda

LindaH · ‎03-03-2009

Dixarit Clonidine is thought to reduce the responsiveness of small blood vessels to stimuli which would normally make them contract (narrow) or dilate (widen). This prevents the changes in the blood vessels of the brain which are associated with migraine, and thus prevents attacks. It also prevents the dilatation of blood vessels and subsequent increased blood flow to the skin, which causes hot flushes in post-menopausal women. This medicine is used to prevent migraines and to treat menopausal flushing, though it is not fully understood how it works in these conditions. It may take two to four weeks before this medicine is fully effective. I only take a very low dose 25mg

LindaH · ‎20-02-2009

If anyone is interested, my GP has given me Dixarit for the hot flushes and I'm pleased to say, they actually work. I'm on Tamoxifen, so was 'flushing' every night. They are ideal for women who cannot take HRT (not that women with BC can do anyway) but for anyone who is oestrogen positive they are absolutely fine. 25 microgram tables, two in the morning and two at night. Linda

LindaH · ‎20-02-2009

Since I've been on Tamoxifen, two years I've been struggling with cystitis off and on. I was prone to bouts of cystitis before Tamoxifen, but only rarely. Long and short of it is, I had a rather bad 'do' two weeks ago to which my wee contained blood. I went to my GP, she gave me Trimethoprim antibiotics, but as-soon-as I had finished them, I was back to square one.....blood in wee again. The results of the sample of wee I took didn't have any infection in it, so now I have to go for a camera in the bladder - I can hardly say it without crossing my legs....ouch! and I have to have a scan and xrays. Having said all that, my GP does think it's the Tamoxifen causing my hormones to go 'rife' but can I just ask, has anyone else been in the same position? And this camera in the bladder thing is not done under anaesthetic, they just numb the area....I am numb with fear already..... Thanks Linda

LindaH · ‎13-02-2009

I've been on Nolvadex-D since 2007 and it's been fine apart from recurring attacks of cystitis. This latest 'do' has kept me away from work, it was so bad. Does anyone else have this problem? Linda

LindaH · ‎20-11-2008

I changed to Nolvadex - D last year. I was so poorly on the generic Tamox, now I feel fine. Linda

LindaH · ‎20-11-2008

Mine is mainly on my neck and my hair is dark, so I have to bleach it fairly regularly. I am thinking of buying a laser machine, but it's going to have to wait until after Christmas now. Mine has definitely been worse since starting Tamoxifen a year and a half ago. Linda

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