hi i just joined today, had a visit from my sister this aft and she said no way would she take tamoxifen as it causes ovarian cancer! I have already been told I am er pos so i will have to take it! Surely it just increases chance of ovarian in some peple? Not very helpful when she has a choice!
I feel like I have enough to deal with without adding this worry to it…
Hi Jacquie08,
I’m ER+ and on tamoxifen. Like all treatments I was made aware it does have some side effects and possible effects on other organs. As far as I’m aware the beenfits are far greater than the risks but it is a personal decision. I think your sister was probably trying to be helpful and didn’t perhaps realise just how mcuh will be going round in your head and how many decisions you will have to make. Your expect sister is just worried for you. Perhaps you could go through the risks to you with your oncologist or breast nurse so that you feel you are making informed decisions based on the facts as they they are known today.
Good luck. Thinking of you.
hi, thank you for replying, I was probably overreacting which
I do seem to have a tendency to since this diagnosis! You are right there is so much whizzing round in my head. Got to go to my auntie’s funeral today and then resikts of my mx and anc tomorrow!
I do feel talking to people who know exactly what is like is so good
Hi
I am led to believe that the risks are minimal & the benefits of taking Tamoxifen far outway the risks. They wouldn’t be considering giving it to people without bc, who are at greater risk, if the benefits weren’t worth it.
I’m 8/8 ER+, so for me it’s a no brainer, but thats my personal choice.
Dyane
Hi,been told exactly the same as Dyane, benefits far out way risks x
thanks girls, I had seen it on the news last week about giving it instead of mx for at risk patients. My sister just took me aback a bit, I will see what surgeon says with my results tomorrow but as they have already said her2 positive as well as the oestrogen I think I will throw everything offered at it!
I don’t like taking it either and some women have dreadful side effects. That said it has been considered a wonder drug for some and I remember the time when a woman had to buy hers from USA as NHS wouldn’t fund it. Now 10plus years on we are lucky I suppose that we get it for free. She had to fight for the right to have it. There is no doubt that for some women tamoxifen has extended life or put women in so called remission. Each of us are individual so unfortunately we have no idea if we are going to be one of the ones where a positive outcome is achieved. Maybe your sister will change her mind once she has digested everything and has all of the options and facts explained to her. X
hi yes maybe she will, she is 49 so has asked for a mammogram in view of my dignosis. She is also having genetic testing which may also influence her! Too late for me though just have to get on with treating it now. I do feel better having had the mx but am dreading chemo and losing my hair. am I the only one who has more of an issue being bald than losing a breast? Maybe cos it is so visible even to strangers, plus I look a devil in a hat!
,
Hi there is a slight risk of developing cancer of the lining of the womb if Tamoxifen is taken over a long period of time, but the benefit from Tamoxifen far outweighs the risk. I don’t think there is a risk of ovarian cancer . I’ve finished 5 years of Tamoxifen now and although I did have side effects I’m glad I lasted the 5 years lol and am greatful that I was able to have it.
Wishing you all the best of luck Melxx
Jacquie08 - Hi dropped in as I was interested in views on Tamoxifen, although I’m on Letrazole. The doc said that when a woman is told she has cancer and will need chemo, they nearly always ask if they’ll lose their hair! I was just the same as you in respect of losing hair, didn’t help when onc said that ‘most ladies find it very liberating’!! I changed oncologists after that!! I started chemo in Dec and finished end of March. I did try cold cap for first one, but once was more than enough!! Couldn’t stand the cold, plus the extra 3 hours it would take for each chemo. When I started losing my hair, my hairdresser came to the house and cut it very short, it was less stressful when it fell out then. I never lost all of it and funnily enough kept my fringe, albeit a light one. I never wear my wig around the house and its the first thing I remove when I come back home! I now have a covering all over, very grey, which I am not used to, and it does seem to take ages to grow, but WE WILL get there, like many others who have gone before. Good luck with your treatment, take care x
hi thank you, I was thinking of trying cold cap didn’t realise it added 3 hours though! I have already had it cut short and as you say will have to get used to the grey as it grows back. Can you ever have it coloured again after chemo? My hubbie says we can buy wigs with the money saved on having it coloured, every 4 weeks! I am very grey at the front but dark at the back
Bit nervous but glad to be getting results today, least then I will know what the plan is definitely, suppose it will be the onc that decides on the type of chemo though?
Hi, just reading all the above, one of my biiiiiig worries is losing my hair. Awaiting date for chemo, having further wle first. So dreading hair falling out. Got hairdresser calling tomorrow for normal roots and cut, will prob have layers put in and some weight taken off, long thick , blonde and curly at mo. gonna try cold cap but havny much hopes. Was in maggies centre yesterday and it scares me to see all those lovely ladies with no hair, but at same time I feel proud of them, and they were all so nice. This can and has to be done I suppose , this disease changes us all so much, we will all come out the other side stronger and a damn site wiser.
I’ve been told you can colour your hair after chemo but about 6 months after, il be grey then!!! But perhaps there are gentle dyes eg veg extracts etc, will ask hairdresser tomorrow.
Hi Lols,
Sorry to hear of your worries re your hair. I have put for you below the link to BCC’s publication on BC and hair loss and hope you find it helpful. Also one of BCC’s services is ‘Headstrong’ which you also may find helpful, I’ve put you the link below.
www2.breastcancercare.org.uk/publications/treatment-side-effects/breast-cancer-hair-loss-bcc54
I hope these help. Take care,
Jo, Facilitator
jacquie08 and lols - as i said yesterday losing hair was for me the worst part of all this, but i got a great wig with highlights for around £70 through nhs hairloss clinic, and everyone said how they couldn’t believe it was a wig. i got my hairdresser to trim it and even chopped some off the back myself, which seemed to make it more realistic, not so ‘perfect’. You can use colour mousse and also certain wella products to colour hair after chemo. obviously have to be careful and probably best to go through hairdresser for best info. but hey go for the wigs, there are some great synthetic ones out there and you can’t tell they’re not real hair, real easy to care for, cold water and wig shampoo wash every two weeks, leave to dry over night, shake out and hey presto! Look forward to seeing some photos later on complete with wig. good luck with cold cap lols, one of our ladies from december thread persevered with it with good results. 
hi girls thanks for all your replies, my onc appt not until the 23rd I was given it today so it is prob going to be Aug before I start chemo! 1 more colour and cut eh? I think I will have to go for a wig, hats are really not my thing, it doesn’t sound too bad and I don’t think I can go bare headed, vain though it sounds. My hairdresser said she would go with me to buy a wig though bless her, I will look into the NHS one though, presumbably they tell you in oncology out pat appointment?
I am pleased today though as full ANC and only ONE was positive! I was so convinced there would be double figures, so I do feel I can get through chemo with a bit more of a postive attitude now!! 
hi jacquie great news ref nodes. i had 2 pos out of 20, so was quite pleased. they made my appt for hair loss clinic just after my first chemo, by all means take your hairdresser along, i took a friend with me. they have lots of choices and if they haven’t got the right colour in stock will order one for you and they only take a couple of days to come. i think if you go into chemo positive it helps you cope better. i used to imagine my cells had shields and swords and were gathering together to fight the cancer, when the bugle sounded they all charged!!! Amazing what the mind does, but i found it helped. i never thought of myself as ‘ill’ just thought of it as a bl…dy nuisance that was stopping me doing what i normally would. i play lawn bowls, am right handed and had mx of right breast and anc of right arm. had op on 5th nov and have been back playing bowls outdoors since april. today i played 25 ends, 4 wood singles, so that was 2hours i played for and sent up 100 bowls, not bad for 8 months since op and 3months since end of chemo! just goes to show that a positive attitude helps! i’m sure you’ll be fine 
hi I love your shield and sword analogy! I have just signed up for a haven introduction day and part of that is visualisation and relaxation. Coincidentally it is my right side too! It is still very numb 2 weeks post op and a lot of fluid. Have had seroma drainage twice now and around 200 mls each time. Does the numbness improve quite soon now? I am a bit worried that it means I am more likely to go onto develop lymphoedema? you sound like you have done so well, I think it is all about getting our lives back, it is such a shame if cancer stops us from doing things ( like your bowling) that we enjoyed before. My bcn gave me the details of the wig shop in our area been and had a look, they are very good, so feel a bit happier now, maybe do that Lols they are much better than I thought!
off out for a walk in the lovely sunshine now takr care all xx
To you ladies thinking about the cold cap, I finished chemo in January as used the cold cap. My hair thinned during treatment but I always had enough to not wear hats, wigs etc. it was painful at times when the cap was on and it does prolong every treatment but my hair grew back so quickly and now 5 months on I have had it cut and coloured 3 times, it’s thick and shiny and no-one would ever know I’d had chemo. You have to work quite hard at protecting your hair during treatment, sleeping on a silk pillowcase, only washing it once a week, gentle comb once a day and it doesn’t look wonderful but I am reaping the rewards now as my fellow chemo mates who lost their hair are certainly getting it back but very slowly.
it is a personal thing and lots of people I know we’re fine with losing their hair and others couldn’t bear the thought of the cold cap but just wanted you to know that it can work very well.
if anyone wants cold cap advice, PM me.
Good Luck!
Jayne x
hi Jayne thank you so much for that! was beginning to wonder if there was any point at all in the cold cap, I have already bought baby shampoo but I didn’t know about silk pillowcase…have to treat myself. I do think it is worth a go if only that it gets your hair back to normal quicker as you say! Do have real issues with being bald as I said before more so than losing a breast which I seem to be coming to terms with quite well, so far so good anyway!
thanks again Jayne I will message you once I have seen oncologist on the 23rd and have a date and what regime I will be having.
J x