Can anyone help, I was diagnosed with three grade 1 tumors in right breast, no vascular invasion but two nodes affected had MX. My treatment plan should be chemo Fec x 3 and Tax x 3, radiotherapy to chest wall and under arm plus tamoxifen. I am so terrified of the chemo I am almost verging on not having it. I know this may be the biggest mistake of my life and how stupied people think I must be, but cant help it the fear is taking over. When you read some of the posts it seems that some poor women have been through all of this treatment and still get mets two or three years on its driving me mad thinking about it all the time. Has anyone been in a similar situation or feels the same way as I do and did you go ahead with chemo or not.
Hope someone can help I like all of us am in a very dark place at the moment and dont know what to do.
I was really, really afraid of chemo (see my handle here!) - but it was never a question of me not having it.
Yes, you are right, and there is a chance you have a recurrence even if you have all that the doctors can throw at it, but don’t forget: there are thousands of women out there, who did not have a recurrence. But they out there living their lives and not posting on this forum!
Chemo is not as bad as you think it would be - I know it is a cliche, but it is true. The side effects are very much controlled, it is not likely that you will be sick. You can even try to use a cold cap so you wouldn’t loose your hair, but even if you do, being bald is not THAT bad!
I was terrified of chemo but was lucky and had very few side effects - the worst was a bit of nausea (but not enough to stop me from eating everything in the fridge) and feeling a bit wired and then down from the steroids - but that only lasted a couple of days each cycle.
I just said on another thread that while this forum is an excellent place for support and advice we do tend to get a slightly warped view as we naturally hear more from ladies suffering than from those doing well. And remember that the vast majority of women are cured after throwing everything at it.
On my first day of chemo I met a lady who was having her last chemo. She saw how teary and scared I was and came over to say hello and give me some reassurance. She has 2 children and worked all through chemo (her chemo was on a Friday, so she had Sat and Sun at home - but with 2 small boisterous boys). I have since met a few other ladies who also sailed through chemo and worked throughout. They never seeked out forum support as never felt they needed it.
So, I can’t predict how you will react to the chemo - but take heart in knowing that there are plenty of women who do OK on chemo. It is 4 months - but not all of it is spent feeling chemoey as once it’s out of your system each cycle you feel normal and can work/go out/shop etc.
Maybe speak to your breast care nurse about your fears (I did and mine was brilliant and really reassuring) or the helpline.
Hi Deb, By the title you have given your thread I would say that you have already made up your mind not to have it, but want affirmation to justify that you have made the right decision. Well, I can’t help you with that I am afraid, only you can make that decision.
What I can do is let you know about my chemo experience to try to balance it all out a bit. I have 1 tumour in L breast, grade2. Was also diagnosed with secondaries in my liver & hip bone. Jan 4th 2011 given first of 6 FAC chemo. Went home expecting to feel dreadful, but never did.The only side effect I had was that I lost my hair. I was not ever sick, didn’t loose weight ( sadly, could have done with a stone ot two loss) and I felt really well. So well that I would go shopping after my chemo on the way home! My family and friends were staggered beyone belief. I did stop all alcohol as I wanted to give my poor liver a chance, but that was the only concession to this disease. CT scan after 6 FAC showed NO TUMOUR in liver, it had healed and dissapeared and my hip tumour still shrinking due to hormone therapy and Zometa ( bone juice) My Onc & the team are extatic and so proud of me,I’m pretty chuffed to!
So, Please try to balance things out, chemo is not always going to make you sick or tired or any other nasties. You are given tablets to counter any side effects, and most of the time it really works. Some regimes are more harsh than others and also depending on your mental attitude will effect how you feel during it. You could lie down and feel sorry for yourself… or you can get off your bum and have a life, I chose the latter!
Message me if you wish, have huge shoulders for crying on! Take care and sending you hugs, xx
Deb, I was petrified! I’m sure I was the biggest wimp in the world, but look, this IS me 14 months later; No regrets, my hair has grown back , the time has fled.
My GP was excellent and gave me some meds to calm my anxiety .
Its not been an easy ride, but like labour pains, its all soon forgotten and now ready to move on with a peace of mind that everything’s been thrown at it as possible.
Deb,
I was so phobic about cancer that I could never even bear to wear a pink ribbon in case it somehow infected me! I am the greatest wimp in the world about nausea and the word chemotherapy could paralyse me with fear up until now.
No-one has made extravagant promises about what chemotherapy will do for me - the oncologist simply said " We can’t promise miracles". But my GP said " Tell them to throw everything they’ve got at it" and that’s what I did. Three months and four treatments later, I have no regrets. Nausea has been well controlled by tablets, the nurses administering the meds have been endlessly patient with my fear of needles and any worries have been dealt with instantly by the helpline.
Be guided by your oncologist. No-one is offering us any guarantees, just the best chance they can give us. I’d rather do something than nothing. I just keep thinking of rich, high profile people who tried alternative therapies and didn’t make it. What we are being offered is the best that can be had and many thousands of women are living happy,healthy lives because of what their doctors could do for this disease that used to be a death sentence. Take all the professional advice you can get.
I wish you all the best in making the decision that is right for you.
Hugs,
Kathleen
Deb, I feel so sorry for how you are feeling now - I’ve been there & know how awful it is.
Chemo is not fun, but some find it easier than others (& remember they are less likely to be posting on here) and there are more drugs which will help with the side effects if you need them. I never even considered not having it, to me it was a small price to pay for getting my life back - and I still have that opinion 3 months after finishing it.
I also felt that I was taking control of the situation, and that by having every treatment offered, I was giving myself & my family the best chance of a positive future.
If you do decide to have it, you will find so much support on this forum that will I’m sure make it all easier for you - from women who have been through it and from those at the same stage as you.
Nobody on here will be able to advise you from a clinical perspective, as everyone’s situation is different - but your oncologist will be able to tell you how much benefit they believe you will gain from the treatment, and you personally have to weigh that up against the side effects. However I am sure that they wouldn’t be recommending chemo if they didn’t think it was worth it.
I hope you make the best decision, feel free to PM me if you need to “talk”.
xx
Hi Deb, it is true that the people who seem to do ok on chemo do not post much on here. I’m one of them and have been surprised at how little the side effects have been. I’m not saying I’ve sailed through, I’ve had tired days and achy days but considering everything I think I’m doin well. I had my first taxotere this week n was petrified after readin all the posts abouts about side effects, but u know what, it effects us all so differently. You have to remember the way it effects on eperson will be totally different from another. I’m fat, n bald n bright red but I’m still smiling and loving life. I hope you make the right decision for you. The main thing is to focus on YOU and try not to worry about what has not yet happened
Well you asked the question and the answer for me is a definite no - I can’t help you to decide not to have chemo.
I know that chemo is unpleasant, and I appreciate that some people still have progression after enduring months of treatment, but it is still better to be safe than sorry.
In addition to the support you have here it may help to talk things through with one of our helpliners, the lines are open 9-5 during the week and 9-2 Sat on 0808 800 6000 and they are here to offer you a listening ear
I think that every women on this site who has been offered chemo will have been as scared as you currently are regarding the prospect as prior to our diagnosis we only seem to have heard horror stories about chemo. I’m afraid that the only person who can make this decision is yourself. Perhaps it would help you if you sat down and listed all the reasons For and Against you having chemo and then see what conclusion you come to when you have put your reasoning down on paper.
Following my mx with reconstruction I was offered chemo, rads and a year on herceptin as my insurance policy against a re-occurence and I decided to take the lot - the more I threw at it the better in my opinion. I was being given a chance and if the treatment didn’t work then the NHS wouldn’t waste the huge resources that it takes to provide it.
Nobody can give us any guarantees in life and that extends to re-occurences of breast cancer. Try not to think about this and cross bridges in life when you get to them - don’t put them in the way beforehand for they may never be there to cross.
Just remember that chemo is different things to different people, but most of us who have undergone it will agree that it is ‘doable’. Just let your oncologist know if you really can not put up with any of your treatment as they can always find a way round any problem, but you must let them know and don’t suffer in silence. The side effects are what you MIGHT experience, but then again you MIGHT NOT.
Take a look at what is already in your bathroom cabinet and the chances are even a headache tablet has side effects listed that didn’t stop you from taking them and that you never experienced either.
I think that the fear of chemo is worse than the experience so try and take it in your stride and mark each chemo session off as you have them. I had to have 6 sessions so after 2 I was 1/3 through, after 3 I was halfway, after 4 I was 2/3 through and then after 5 it was just the last one. This bite-sized approach worked for me.
Good luck with whatever you decide to do and remember that you have a whole army of people on this website who will be there to hold your hand and help you through the experience should you take all the treatment that you are being offered.
I suggest you discuss it as fully as you can with your oncologist - they will be able to give you an indication of what the percentage benefit would be for you (they use Adjuvant Online but you can access Predict which is similar). My oncologist said she did not recommend chemo if the survival gain was <3% as the treatment risks did not warrant it. I wouldn’t take a straw poll of friends and family as they do not have the knowledge to help you make an informed decision although they will want the best for you. Whatever you decide, believe in your ability to make the right decision for you and I wish you all the best.
Hi Deb, I was terrified of having chemo and was then told that rather than the usual 6 chemo, I was going to need 8 sessions. I did have a very hard time on chemo I won’t lie but did not for a single minute think of stopping treatment. Before you know it treatment is finished and you can think to yourself you’ve done all you can.
I took a huge amount of comfort from knowing that so many other women had got through chemo. I also thought to myself that if I didn’t have chemo and the cancer spread how would i feel? The answer was easy, I would have bitterly regretted it. I wanted to do everything possible to keep myself alive.
Okay so chemo isn’t a guarantee but even if it just offers you even a slightly better chance of survival, isn’t it worth it? Also worth remembering that most women do not go on to develop to mets and many of those that do still lead fulfilling lives.
There is tremendous support on this forum and you can ask anything you like or have a rant or whatever you want - there are always others who understand.
Deb what you don’t see is the many more women who have chemo and don’t get mets and are busy getting on with their life so no longer post here… And the ones who have got mets following treatment may have got them a lot sooner if they didn’t have chemo.
Some people find it awful but not everybody does and without you having experienced it you might find that although it’s not enjoyable it’s maybe nowhere near as bad as your expecting.
Generally speaking you wouldn’t be recommended it they didn’t think it was going to be beneficial… Chemo is very expensive treatment so they wouldn’t give it to you unless they thought you needed it.
But it’s maybe worthwhile giving it a try even if you don’t have the full course… There is now some evidence that 4 chemos is just as effective as six.
this is a terrible journey but i am sure you have the drive within to put everything you have into fighting this terrible disease. I guess you would have to make what they call an informed decision
which means that you are aware of any consequences of not having chemo are fully understood
I dont know how scared you were before surgery. I went for excision then needed re exciscion and sentinel nodes both were wiyhin 3 weeks
I was terrified and didnt know how i would do it but i did and you know it wasnt as bad as i thought it would be i didnt enjoy it but i got through it
i have been advised of pros and cons of chemo and left to make up my own mind however i only have a small grade one cancer and micromets which makes me bordeline. not having chemo is not a soft option i beleive living in fear of the consequences of not having chemo is difficult
call your breast care nurse talk it through and you will get the support you need fear of the unknown is normal
Just remember Deb that most, if not all of us who have replied to you, have decided to have chemo and have come out the other side alive and kicking.
Life was never meant to be easy, but if we can do chemo then you will be able to too. We will all be behind you cheering you on - of that you can be sure of, if nothing else in life.
Talk it over with your BCN and your oncologist - as Lulu says, at least give it a go and see how you get on. Some is better than none, and who knows - perhaps you will get to stay the course like the rest of us have.
Deb the main thing is whatever you decide have no regrets about your decision.
Good luck either ways … Chemo is no picnic for some if it was we wouldnt be having this discussion but I wasn’t confident enough to reject it.
Magda
It sounds like you have decided to “bite the bullet” as you say. So am wishing you all the best, and hope you won’t find it as bad as you fear. Remember we will all be here to support you through it, and talk to any time.
I had chemo because it was no-brainer for me (eventually diagnosed as grade 3 HER2+) but even before I’d had my full diagnosis, was supposed to be grade 2, I was intending asking whether it would be worth doing and I would have pushed for it. However, I know one lady at a local support group who had declined chemo despite having affected nodes. I think it’s about 3 years since then for her, and she’s still going strong and no sign of recurrence. So sometimes it IS the right decision. The only thing is, none of us know whether it’s the right decision for us.
As has been said, you are the only person who can make the decision, and you have to be happy with your decision because you’re the one who has to live with the consequences. If you felt yourself pressured into chemo but weren’t happy with that choice, you’d find the whole chemo stuff even tougher than it is. If you decide not to go for it and then later get scared about the "what if"s, or even have a recurrence or secondaries, you wouldn’t be happy with that either. So YOU need to be happy with the choice you take because this is YOUR life, not ours, not your onc’s, not your BCN’s. By all means get expert opinions from the professionals, have a chat with the people on the helpline, talk things over with your GP (I concur with the advice not to take a straw poll of your friends and family who really don’t know about BC other than through you) and reach a decision that you can live with. My friend who decided against chemo felt that she really couldn’t face it, and has been happy that, for her, it was the right thing even though her onc really wanted her to have it.
