Breast Cancer Now Forum

Like everyone will say only you can make the decision, I am supposed to take Tamoxifen as I was er+.  I tried it and it was horrendous, it made me feel worse than the chemo ever did, so I made the decision to stop it.  I couldn't live with the side effects for 5 or maybe 10 years.  But if I am every unlucky that it comes back I know that I won't blame not taking Tamoxifen, because it could come back anyhow, just like hopefully it won't come back.  Its all about risk and what we are prepared to accept risk wise.  I felt happier giving up Tamoxifen partly because I knew I had had the chemo and Herceptin and for me that was more important.   ... View more

My tumour was huge, it started at 5cm so I had chemo to try and shrink it first so I could have lumpectomy rather than mx, which I did.  It was grade 3, er+ and pr+ and HER2+, so I also had a year of Herceptin  and radiotherapy.  It hadn't gone to my nodes and I have no idea if it was in the blood as I never asked anything like that.   I had my chemo from Nov 2010 to March 2011 - 8 sessions (1 every 2 weeks), I then had surgey and then radio and went back to work full time in August 2011 and just went for Herceptin every 3 weeks then before work. ... View more

Just thought I would jump in here - obviously no-one can make your mind up for you, only you know how you feel, but what I would say is don't refuse chemo just because you think it is going to be horrible.  I had chemo 4 years ago and it is no-where near as bad as people think it is going to be or was in years gone by.  Apart from hair loss and tiredness there are medications to combat every side effect.  I didn't even want to try cold cap - the thought of sitting with a freezer on my head was one step too far.   I had very aggressive chemo (every 2 weeks instead of every 3), I never felt sick once because I took all my anti-sickness meds, yes I was tired but it only stopped me doing things for a few days.  I even went to Paris for the week-end just before my last chemo.   Its not pleasant, granted but if it were me and it was invasive in my blood vessels I would be having the chemo - I wouldn't want the risk of it staying there and popping up somewhere else at a later date.   It really isn't anything to be frightened off these days. ... View more

There's probably nothing I can say that will make you feel better, but as someone who is now 4 years out the other side what I would say is that chemo isn't as bad as everyone things it, it isn't as bad as in the so called "bad old days", and you will get through it. You will find that the staff will be very helpful and once you have had the first session you will know what you are in for with the others.  I know what you mean about wanting everything to go back to how it was, but unfortunately that never happens and the trick is to find a "new" going forward and you will, you probably don't think that now, but you are stronger than you think and you will deal with it.   Take care.   ... View more

Like Naz says a difficult one.  I don't have endo problems so haven't been in that position, but I know when I had chemo 4 years ago, it looked like it put me in the menopause and the flushes, mood swings, aching joints, thinning hair etc were horrendous.  I also gave up Tamoxifen because I couldn't be doing with the side effects and for my sanity went for quality of life cover quantity of life.   Interestingly recently my periods seem to have come back, and with it every side effect has gone.  I feel all of sudden back to how I was when dx (I am 46 now by the way, was 42 at dx).   I haven't told my onc, both about the periods or giving up Tam as she will go up the wall.  I may tell her when I see her in May next year (not sure yet).   What I would say the best decision will be the one you can live with yourself, personally I would go with the gynae team.  The cancer team will always say no to HRT, even though some things you read now say that it poses no risk, but  they won't even entertain it.   Don't know if that helps - hopefully it will. ... View more

Sounds like you have got a very sensible consultant, as you will read from my post yesterday, that is exactly what I had.  My lump initially was 50mm and by the time I had finished chemo it had shrunk to just scar tissue so that made removing it incredidly easy.  I them had rads as insurance. As the consultant has said the chemo will also mop up any stray cells anywhere else and also give you a few months breathing space without having to deal with the whole treatment plan and decisions in one go. You can then make a more informed decision/choice after the chemo has done what it is designed to do. ... View more

Don't know if this will help/ease your mind etc, but when I was dx in 2010 the lump was huge.  I had chemo to shrink first but was told I would need mx as wouldn't be able to shrink enough.  However it did shrink and then my surgeon said I would only need lumpectomy.  I was very cynical because at that point had got my head round a mx and having recon etc. My husband actually asked the surgeon outright - "what would you recommend if it was your wife as we want the best long term survival" and he said he would recommend lumpectomy followed by radiotherapy as it was the same survival outcome. I think we are all geared to think along the lines of chop it out as quick as possible so it can't come back, but that isn't always the case and can sometimes cause more trouble.  As my surgeon said to me, you wouldn't have all your teeth pulled out just because one needed attention and he could have made money out of my treatment as I had all my treatment privately. Remember also that once you have had a dx of BC you will always be monitored closely so if anything does appear later down the line it should be picked up very early indeed.     ... View more

I think different medical people have different views on this just as patients have different views.  My medical team use the phrase cancer free after surgery has removed the lump, whether that is before or after chemo.  My onc and surgeon also use the term "cured" as my surgeon said to me that you are cured unless or until it comes back, just like any other illness, and I know a lot of people find that quite controversial. ... View more

My ER and PR weren't quite as low as yours but everything else in my treatment was the same.  My onc gave me Tamoxifen and said to try it which I did and had horrendous side effects, so I stopped.  My surgeon however said that in his experience the Herceptin was more of a wonder drug along with the radiotherapy for preventing a recurrence than anything else.   I think what you need to ask yourself is would you feel better mentally if you took it or would be quite ok not taking it.   I was happy with my decision not to take it, I know it could come back, but then I am quite philosphical in that I could take Tamoxifen for 5 years, 10 years and then it could still come back.   Main thing you have to be happy in yourself with your decision.   Don't know if that is of any help to you, but hopefully it is. ... View more

Like I say I think the main thing is, YOU have to be happy with the decision.  My husband just said that it was up to me, we are both very pragmatic and well aware that you can do everything they tell you and it can still come back, there are no guarantees.  He has never given me a hard time about it.   I was 42 when I was dx.  I have never told my onc or surgeon that I stopped taking Tamoxifen, I see her and my surgeon once a year, and when they ask how I am getting on I just smile now and say, yeah fine, everything's fine and then just go on my way for another year.     ... View more

I don't know if this will help both of you, as it is not really advice, more my experience. I was dx in Nov 2010 and had the full works, chemo, surgery, radio, herceptin for a year and was then expected to take Tamoxifen. I tried on and off for a few months, but within days of taking it I felt awful and it was really impacting on my daily life.  So after around 6 months I stopped.  I didn't tell my onc as by then I was only seeing her once a year, I just stopped ordering my repeat prescription. That was in 2011.  Yes, I know I have increased my risk slightly by not taking it, but on the other hand I had every other treatment, more than some people have, and I am happy with my decision.  And I think that is main thing, you have to be happy with your decision, not what someone else says.  Yes the cancer may come back, but there again, I could take Tamoxifen for 10 years and then the cancer could come back after another 2, there are no cast iron guarantees. I don't do anything special or take anything special other than vit D, but that was because I was diagnosed with a vit d deficiency.  I still eat all foods in a balanced way, and I still have a drink when I want one.  For me it is quality of life over quantity.  I don't see the point of going through all that treatment to be miserable.   ... View more

I don't post often now but thought I would reply as you are having the same regime by the sounds of it that I had back in 2010/11, and at the time I didn't come across anyone else who was.   I had 8 sessions of AC Taxol dose dense chemo from November 2010 to March 2011.  I had my last chemo session middle of March and then had surgery 4 weeks later.  I could have had it the week before but if I remember I wanted it the Thursday before Easter so that my husband would be off work to be at home.    I had all my treatment privately so the waiting time was purely medical and nothing to do with waiting lists.  When I had surgery I was fully recovered from the chemo in terms of bloods etc, and in the event my surgery was only an overnight stay because the chemo had shrunk the tumour to scar tissues only so it wasn't a big thing at all.   I then had another 4 week wait to start radio and then 4 weeks after that I was back at work full time, returning to the hospital once every 3 weeks for Herceptin.   Hope that helps you. ... View more

First of all, you will cope with the chemo side effects, its really not as bad as everyone says it is (those people who say that usually haven't had it in my experience), and secondly I think personally it is immaterial whether you are 74 or 44.  Who's to say we all won't be still kicking when we are 94!!  I certainly intend to be and I was only 42 when I was diagnosed 4 years ago.   I can understand you may not want to tell the world - I really didn't care who knew I had cancer, the problem I couldn't be bothered dealing with was how "everyone else" felt, everyone seemed to have an opinion as to how it was affecting them.  As I ranted to them I didn't care how they felt, I was the one with cancer, not them.   You need to lean on your husband though as he is going through it with you, mind was absolutely fab, he looked after me single handed and still managed to go to work most of the time.   As to the side effects, my onc told me that the only thing she couldn't control was hair loss and tiredness, everything else she had a remedy for.  And she was right, I had enough anti-sickness so  that I never felt sick, and anything else that came along she dealt with.   The hair loss never bothered me one jot, I didn't bother with cold cap (this is an option to try if you really can't face losing your hair), I didn't bother with a wig and so I became a dab hand with scarf tying. I didn't find this forum until I had finished active treatment, but you will find support if you join one of the monthly chemo threads as it is a good way to touch base, so to speak, with others that are going through the same as you at the same time.   I would also say that don't worry about keeping in contact with other people, I was quite selfish I admit it, if I didn't want to come to the phone my husband would say I was sleeping or even that I didn't want to talk to anyone.  If they are true friends they won't mind and if they do mind, do you know what, they aren't worth keeping in touch with.   The only people you need to talk to and take notice of are your medical team and your husband and with their help you will come out of the other side.  In the whole scheme of things it is such a short period of time.   Take care ... View more

Personally I do think they know sometimes.  When I first went to my GP she was convinced it was fibroid tissue as it was a spead out lump/area and again when I had the first mammo they could only see that too.  It was when I went for the ultrasound and biopsy that I could tell from the radioologist's face she was looking more worried and kept looking closely etc. I asked her straight out what she thought it was and she said that she couldn't say and that I would get an appointment with the consultant if it was worrying. I said "should I be worried" and she looked at me and said "I would be worried if it was me".  That said everything to me.  And then she said "but don't worry too much, they have great treatment these days". Like you I was on my own and by this time completely shell shocked. I know this doesn't help you much in your waiting, but what I would say is that 4 years later I am still here and I survived everything I had to go through to get to this point. You will too, and believe me when I say that the waiting is definitely the worst.  Whatever the results, you will deal with everything as and when needs be. ... View more

Can't particularly help with the specific insurance companies concerned, but maybe I am stating the obvious or being naive here, and correct me if I am wrong, but if you are only on Tamoxifen you have now finished active treatment, so surely you don't have to declare anything currently to do with the BC, as you don't actually have it anymore.  Surely you just need to say you had it in the past?   I have travel insurance with my bank as general cover and have never mentioned anything re my cancer.   Am sure that others will correct me if I am wrong here! ... View more

If you have private insurance I would give them a ring and ask who is the best person they recommend and who they cover for treatment in your area. I was diagnosed 4 years ago whilst living in Ireland but I wanted to come back to London for treatment.  I too had private insurance and gave them a call, explained the situation and they gave me a list of who they covered for treatment.  I then looked them up on the Internet and contacted who I thought would be best for treatment. I then went on to have all my treatment privately in Harley Street. You may find that having just moved to the UK you aren't eligible for treatment on the NHS, so having private health insurance will be a god send and you will get better treatment than the NHS. Hope that helps. ... View more

I very rarely post now, being 4 years down the line so to speak but I can relate to you because like you I can't abide being sick.  When I was told I needed chemo that was all I was bothered about.  My onc was very good, she specifically asked me what I was worried about the most and I said being sick and her words were "no-one has to be sick nowadays, not even nauseaous".  She gave me a whole raft of anti-sickness meds and I took them religiously - I wasn't even going to risk not taking them.  I had Emend before the chemo and for 2 days after and then I had another 2 sets for 5 days after chemo and them general anti-sickness for as and when and I took everything for the whole 4 months I was having chemo.   Make sure you tell them that that is your phobia as if you do they will ensure they give you enough meds, if you don't tell them they don't know.   Hope you get on ok. ... View more

Firstly well done on getting through treatment and back to work and fitness.  This happened to me when I returned to work after treatment in 2011.  I was still having Herceptin when I went back to work and there was never any problem with taking time to go for this.  But I found like you for around 18 months I seemed to catch every sore throat and bug known to man.  I don't think it helped working in an office where bugs were and travelling to and from work on the train with people coughing and sneezing. I was told I had to see the firm's OH doctor when she came in as I had over stepped the 10 day sick policy.  She was excellent, told me that of course I would get bugs etc as my immune system was basically "shot at" with all the chemo etc.  She did a very stern report to HR telling them this in no uncertain terms, and also suggesting that they needed to improve their treatment of cancer survivors.  Needless to say I had no more problems with HR. As time goes on you will find you get less and less bugs etc.  I am now 4 years down the line and this year I haven't had one sick day from work, so you will get there. Remember, OH is there for YOU, not the company.  They are there to make sure that the company don't overstep the mark with you.  Go in there all guns blazing!!   ... View more