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Anyone decided against chemo and Tomoxifan & chosen ovary removal?

21 REPLIES 21
mazza1
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Thanks for your words of support PuffyWhiteClouds and your post Cornishgirl. I haven't been able to log on since the last time as my eye swelled up to twice it's size due to my first and last chemo and now my nails have gone black and did I mention I'm bald and can't raise my arm because of the phlebitis! Obviously, I don't know for certain it will get me but I've known a few women and also read lots of accounts on here and other websites who have had all the treatment and it still returns. I know there is a low risk of it returning in the other breast but there is still a risk and that the cancer can return in the other breast along the scar line as they can't remove every bit of breast tissue. If I hadn't felt so ill with the first chemo, I would have persevered with it. But, I thought do I want to be left with lasting effects of chemo and tomoxifan and it still return anyway. I want to be able to live normally and not be in and out of hospital and have to live with lasting side-effects up until it returns (I know, if it returns!).
This is the right decision for me and I totally understand everyone who has the chemo and the tomoxifan, and good on them for having it. I always planned to have both treatments but the side-effects I had with the first chemo confirmed that it wasn't for me. I know it kills any cancer cells but it also kills everything else too.
I feel like a wait has been lifted off my shoulders now I've made the decision in fact I can even crack a joke about it now and since I was diagnosed I have been so serious and down and it's all I could think about. But I would never say to anyone you shouldn't have chemo and Tomoxifan because it will come back anyway. These are just my views and personal to me.
Sorry I took so long to reply to your posts.
Mazza1
PuffyWhiteClou
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Mazza1 - just to wish you all the best with your appointment tomorrow. There will be people who will support your decision about treatment and those who may never understand it. "This above all to thine own self be true"

All the best,

P.S. I get the sympathy face too (makes me laugh to watch 'em squirm!)

cornishgirl
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Hi Mazza, i would never tell you to have or not to have treatments as that is a decision that you can only make yourself based on your own path results and what feels right for you, what i did want to ask though (if you dont mind ) is "What makes you think that your cancer will return to get you?" i dont know your full DX ,but from what you say you seem to have an early stage and intermediate grade cancer that would most likely respond very well to treatments though of course as in life there are no gaurentees with anything, You say you are thinking of haveing your other breast removed for further protection, im not sure if you know already but the chances of breast cancer occurring in your opposite breast is realy very small ,approx 5%, and a MX while reducing your risk considerabily ,unfortuneately does not guarentee that you still wont get breast cancer again in that side, as breast tissue extends to the clavical area and also the auxcillery so they cannot remove all breast tissue and there will always be some breast tissue left behind.
Like some of the other ladies ive had BC twice, both primarys and in opposite breasts 5 yrs apart (i was the one of the 5% unfortuneatly though it realy is not very common) like you, my first dx i had no lymph node involvement and was HER2 neg though i was grade 3, my 2nd Dx also grade 3 but but with extensive lympho vascular invasion and was also HER2+++ so am now currently haveing herceptin ( 16/18) so only 2 to go and am on Tamoxifen, I just wanted to say that there are a lot of scare stories about tamoxifen on the interenet , but the truth is the vast majority of ladies who take Tamox usealy have very few if any SEs ,we often only hear of those who have bad SEs with treatments as those who dont are usealy off happily liveing their lives so have no need to post.
Tamoxifen since its induction is still today classed as the "Gold Standard" hormone therapy for er+ BC ,and has no doubt saved thousands of lives since it was first introduced 40 yrs ago. If you realy do not want to continue with chemo ,(and that is your choice to make) i would urge you to still consider Tamoxifen, as it can often give you the same % benifit or sometimes even more in some cases for non reocurrence in the future , maybe you could try it and see how you go? ,you could always come off it if you suffered with any bad SEs . I, like all the others ladies cannot tell you what to do, but all i can say is that, The Best chance at beating Breast Cancer is the first one, IF you did go on to get secondaries,god forbid, then there is no chance of a cure ,there are treatments still, but these are usealy more to extend life, sometimes if your lucky for many many yrs ,and sometimes not. Please consider all your options very carefully , as unfortuneatly there realy are no 2nd chances with Breast Cancer.
Good luck to you ,and all the best with whatever you decide, its all rubbish i know, but keep comeing on here for some help and support, we have all been there and know what your going through.
Linda x
mazza1
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Thank you for taking the time to reply to my question LuLu34, DeeDee215, Birgit, Applestreet,Puffy White Clouds and Tors. Am seeing my oncologist tomorrow but leaning towards not having ovaries removed either and just having the other breast removed but am seeing a genetic counsellor regarding the breast. I was adamant about not continuing with the chemo and having researched Tomoxifan not having that either so if my oncologist had suggested lower or weekly doses I still would have refused.
And regarding the comment from Puffy White Clouds regarding children, thank you for that. Although, I had to have a hysterectomy when I was young, I never wanted children and my comment replying to another post when I said "Perhaps having children spurs you on". I don't know if it would make a difference if I had any, may be it would, may be it wouldn't. But thank you for that comment. Nothing to do with breast cancer but when other women with children ask if you have any children and you say "no", you always get the sympathy face!
I know what I'm doing by refusing any drugs isn't a popular or common decision to make but it's right for me as I'd like to be well up until the point when it returns to get me! Once again thank you for your helpful insites and experiences, it really helps.
Mazza1
tors
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Hi mazza,

It's a very big decision you've made not to have the treatment which your oncologist and medical team had discussed and agreed was the best thing for you. I wonder what the oncologists view was after your first chemo? Did he suggest reducing the dose? Or swapping to a different chemo? Or tweaking your medication to deal with side effects? Or putting you on a weekly chemo? All of these are options which have helped numerous ladies who I know to continue chemotherapy after a bad first cycle. I'd be surprised if your oncologist hadnt suggested this and would urge you to get a second opinion.

Have you been given your statistics for survival? If you are making such a massive decision, you need to have every possible bit of information at your disposal to make a balanced choice. Your stats can tell you the likelihood of survival with just surgery, and then the added benefit of chemotherapy, and then the added benefit of hormone therapy. Do you know how oestrogen responsive your tumour was? It's scored out of 8 and the higher the score, the more benefit tamoxifen and ovaray removal will have been to you. How large was your tumour? Tumours over 2 cm are more likely to have spread than under 2cm tumours. Was there vascular invasion around your tumour? Hats another indication it may have spread. What grade was it? What was the K67 score? Why exactly did your oncologist think chemo was the best option in the first place? I think you need to be absolutely clear on all of this information before you male such a monumental decision. Yes, it is your decision at the end of the day, but you owe it to yourself to have all the salient information at your disposal whilst making it. You need to be sure you know how breast cancer works, how likely different types are to spread and what type yours was, and knowthat different markers in a tumour can indicate likely propensity to spread, and these should be in your pathology report, which it would be very useful for you to read. This is your best shot at being cancer free. Cancer cells can travel from the main tumour through the lymphatic system and can leave traces in your nodes, but cancer doesn't always leave evidence it has moved on from the original site, it can move through your blood stream. There are, sadly, many cases of women who have been node negative but have still died from their breast cancer because it spread, and the younger you are, the more likely it is that you will fall on the wrong side of statistics.

I urge you to ensure you have all the information before making your decision, ad to go get it if you haven't already got it all. If you already have got it and have considered it, and your decision to not have chemo and tamoxifen is based on that, then fair enough, it's totally up to you, but just don't go into this blindly.

PuffyWhiteClou
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Thanks Apple, yep, I believe that, armed with good, reliable information, we all have to do what we feel is right for us individually.

All the best.

applestreet
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Hi everyone..puffy...you have made me think..I posted that I owed it to my family to take all treatment but in reflection..I would've done all that for me as well..my personal opinion is that we have found ourselves on this course and have to do whatever is comfortable for ourselves..Mazza...hoping you have found some advice in these posts and whatever you decide I wish you all the v best...apple

Birgit
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Mazza, SO sorry that you have to make all these very difficult decisions. I think MG's post was helpful in that she explained all the pros and cons. Sadly, cancer is so unpredictable, some ladies have every treatment possible and it still recurrs, others go without and have years of no problems.

I fall somewhat between those two extremes. Like you, my first BC was garde 1, stage 1, so no chemo was offered and I just took Tamoxifen for a few years. But I developed peripheral neuropathy to my eyes, and they stopped it. At the time (1999/2000) there was still a lot of debate about eye damage on Tamoxifen, but now they do agree that it can be a side effect. I had a reconstruction at the same time as my mx and had many years without problems. Then developed a recurrence in 2005. Lost the implant, had total mx and auxillary clearance, and all nodes were affected. Nobody said whether not staying on tamoxifen for 5 years would have made any difference, they just don't know. Then had (like you) 1 cycle of chemo, but ended up in hospital with severe side effects and it was decided not to continue, but I did take Arimidex for several years. I managed to cope with my prothesis and thankfully have a very caring and loving husband, who saw me no differently then before the operation, so that was an enormous help.
Then sadly was dx with secondaries in 2012. Chemo is not an option - and has not been offered, but I am on Letrozole and have 4 weekly Denosumab injections.

At the end of the day you have to make a decision that is right for you. You may well decide not to have any further treatment now and just take 'your chances' and see what happens. As long as you don't blame yourself or others do, then go ahead with what feels right for you. Take care.

PuffyWhiteClou
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Interesting thread.
Your choice entirely. Effectively no-one is told that they "must" have any treatment because we all have to give consent to any medical treatment, major or minor.
Worth bearing in mind that removal of ovaries does not remove all oestrogen from the body. I have had my ovaries removed (because of family history of ovarian cancer) and having had ER+ breast cancer I am still on hormone treatment (AI) as oestrogen is still synthesised in the body even without ovaries.
By the way, as a childless person (by choice) I take issue with the "having children to consider" assertion. Those of you who have children, imagine if you didn't, would you really be less committed to trying to stay alive for as long as possible after a cancer diagnosis? Personally I want to throw everything I can at this disease because I want to stay alive for me, my future and for all the people I love.
Mazza - I wish you luck with your decision. Do what you feel is right for you.

deedee215
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Hi everyone, I had a lumpectomy and snb on the 3rd of may there, Before I went down for surgery my doctor said there was a high possiblility I might need chemo along with radiotherapy and hormone tablets. I go back to hospital on the 16th for my results of the surgery. I am so scared as I really do not want chemo and seriously considering declining this but my family have said no I shouldn't. I will probably get told on the 16th what stage and grade it is. Would I still need chemo even if it is stage 1 or grade 1. Chemo would change my life tremendously as it does with everyone. I would need to give up my job as a fostercarer and have had two kids for 2 years one from birth long term so would be totally gutted by this. Also I have had operations on my head when I was younger so have massive scar on my head so loosing my hair would be devastating for me. Sorry for giving yous all my worries, just at a very scarey stage at the moment. So mazza I can fully understand how you are feeling All I know is that my bc is invasive and is living off my hormones. Well done to everyone who has came through treatment you are all very brave.

Doreen
xxx
Lulu34
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Mazza nothing will guarantee that it wont return but theres a better chance that it wont return or at least delay its return if you take the treatment but really its your decision..... Like rattles i carry a brca mutation and iv had bc 3 times.... Once in each side and one in my chest lymph nodes, iv beeen on amoxifen from 2006 and 2013 and now on letrozole and ad very little in the way of side effects from the tamox.... Iv had chemo twice (14 cycles) and radiotherapy 3 times (70 lots). my first cancer was hormone pos and next one was triple neg and my recurrence was triple neg. but i am still on hormones o the first one and to reduce my risk of a new one.

i yes the chemo was evil but the tablets are fine and i dont allow the side effects to take over.... Just means i have more potions and pills to take along with my tamoxifen.... I take 10 tablets at bedtime..... Some are completly unrelated to bc.... But if it helps me stay around longer and see my kids grow up and do all the fun things i wanna fit into my life then ill just get on with it.
I also had my ovaries out as a gene carrier and had more SEs from that than from tamox.

everybodys priorities are different and i realise that its a very personal choice but if you never take treatment you wont know if its bad or not and you can always stop the treatment if you decide you cant cope with it but if you change your mind you may not be able to start having it in a years time if you have declined it now as it may not be so effective.

let us know what you decide

Lulu x
mazza1
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Thank you for replying Applestreet and Rattles. I'm glad you feel okay now Applestreet and I'm sorry that you have had to have your ovaries removed Rattles because of bracc 1 mutation. I had my mastectomy in mid-March this year. I don't think I'm brave, in fact I think everyone that has all the chemo and tablets are brave. I have read so many accounts of women going through all the treatments and Tomoxifan living with the side-effects and it still returns. Once I have spoken to the counsellors and my oncologist again I would love to take you up on your offer regarding questions regarding ovary removal once I have spoken to the two counsellors and the oncologist.
I am so grateful for this site. Yes, you are right it really does help to get different women's perspectives on situation.
Once again thank you for replying.
Mazza1
Rattles
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Hi mazza1,
I am sorry you have to face some difficult decisions, and although my situation sounds a bit different I wanted to share a few thoughts with you. I've had a few difficult decisions to make myself and it can feel a lonely place. I also think that it helps to get different perspectives as it can help you work out what is right for you.
I have had breast cancer twice, but both times triple negative, so I haven't taken tamoxifen. Its taken me a long time to see the positives in this ie not having to cope with the SE's etc. However, I have just had my ovaries removed as I have a brca1 mutation- this was as a risk-reducing measure for ovarian cancer, So, if you have any questions on this aspect, would be more than happy to help. I just wanted to highlight that many of the side-effects of having oopherectomy are the same as taking tamoxifen. As I understand it, this is because of the loss of oestrogen. So, I am sitting here nursing aching bones and hot flushes etc I also gather I have just increased my risk of developing heart-disease- great!! Once your ovaries are gone, there is no going back.
I completely understand your reservations about treatment. The first time I had chemo, I was very much 'bring it on', the second time around, I was much more fearful of the long-term effects. I have also now come across other women who have declined aspects/all of their treatment.
Ive made some diffiuclt decisions myself along the way and I have found that there is a 'facts and information' component and then there is 'how do I feel.' Both are important esp as science only takes us so far, esp for someone like me.
The other thing I would say is not to rush into anything, you have been through a traumatic and diffiuclt time and you might be surprsied to find your position and feelings change quite dramatically.
Have faith that you will make the right decision for you.
Good luck, Rattles

applestreet
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Hi Mazza...can I just say excellent post MG as well..Mazza...you are a braver lady than me..I wanted to throw everything I could at my gremlin..and I did..6*FECT..and tamoxifen for 5 years..1825 little tablets..4 yrs and 2 months to go..they make me hot..give me insomnia..weight gain..and peace of mind..I have had right Mx and was glad to be rid of my cancer containing boob..no recon on the horizon as I can't face more surgery..I don't feel any less of a woman for having one boob..I feel damn grateful everyday for being here...you don't say how recent or not your surgery has been but as MG says with time you may change your mind..my first chemo was nasty but the docs dealt with my symptoms and I continued on my unwanted journey of treatment..I would like to ask how you know your cancer will return..I hope not..I do know that I have done everything in my power to beat this little s*d that dared to intrude on my life and I know I want to stay with my OH and kids.. I felt that I owed it to my family to do all this...today is exactley 12 months from my last chemo and boy am I glad that I had it..I wish you all the best with your choices but urge you to talk it over with the experts..apple

mazza1
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Thank you ladies for replying to my post and especially MG. Mine was Grade 2, no cancer in my lymph nodes and Her2 negative and all the cancer was removed with the mastectomy and I am the first person in my family to have had cancer. I wasn't told to have the chemo but just told what it was, what it does and the percentages over the ten years that the chemo and Tomoxifan gives and I could decide whether I wanted it.
I had to have a hysterectomy when I was young so I don't have any children. I was hospitalised twice with just the one chemo I had, but as I said I was having second thoughts before it. Unfortunately, I am the type of person when taking drugs always get most of the side-effects. I did with the drugs I was given before my hysterectomy and I get severe migraine and get all the severe side-effects with the different tablets I have taken for migraine over the years. I don't mind having my ovaries removed in fact I wanted them removed when I had my hysterectomy but the surgeon said it would throw me into an early change, but I had hot/cold flushes before I had the operation and after I still had them, had memory loss and hair and skin was awful. It's just that when I was researching on the internet there are studies in America that state there is a link with young women who are pret-menopausal and have their ovaries removed develop Parkinson's Disease and Alhziemers.
I think if you have children to consider it probably spurs you on.
I just can't get my head around the fact that if I have all this treatment together with the side-effects it can still come back. They said in all likeliness with the type of cancer I had it is more probable that it won't return than it will but it still could. As cancer doesn't play by any rules. And I just don't know about the reconstruction. My oncologist has made an appointment to see a genetic counsellor and I am going to see a counsellor just to talk over stuff. But sometimes you just get sick of talking about it. I hope I haven't depressed anyone!
Anyway, many thanks for your reply.
Mazza1
Mary_grace
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Thanks Morwenna. I just remember how I nearly refused radiotherapy and worried about tamoxifen and now it seems quite surreal as they turned out to be so little of a problem for me. I know other people have worse experiences and I am lucky x

Morwenna
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Excellent post MG!!
Mary_grace
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Hi Mazza, bc brings a whole lot of tough choices and in the end we have to decide what is right for us. I saw my mum die of bc when I was young and was quite clear that I would take every treatment to nip this in the bud now in the hope that there is no next time. This seems a very random disease, and whichever treatment we do or don't take or prevention afterwards doesn't offer any guarantees. You might refuse it all, I might use it all and still be the one to get a recurrence. In the end we can exercise choice and you have a perfect right do so.

I would, however, just say a few things if I may. I didn't have chemo because I was grade 1 and stage 1 and not considered to need it. As you have stopped the chemo, we are probably similar in that neither of us had a systemic treatment. I did have radiotherapy though with absolutely no after effects that I can tell, and that might be an option to zap the area of your mastectomy and ensure that there are no rogue cells left. it is a month out of a lifetime and only a few minutes treatment per day.

I was scared witless by the list of contraindications both on radiotherapy, and tamoxifen which I have taken for the last two and half years. The oncologist said that if I hadn't had chemo, tamoxifen would be particularly beneficial to me because it also acts as a systemic. Like you, I didn't like the sound of it, but agreed to give it a go and see whether it had terrible side effects. Despite the horrible sounding things on leaflet, it really didnt have any nasty effects on me at all and I would be very happy to take it forever should someone say that would help to prevent bc coming back.

I guess what I am saying is, you might give tamoxifen a go and see whether it affects you. It might well not? They also told me that most benefit is gained in the first couple of years, so even if you only took it for a while, help offers you protection for a long while afterwards.

I reckon getting rid of your ovaries is probably sensible. It would presumably cut down on the level of oestrogen in your system and that can only help. I would happily have got rid of mine. I have had my children, I don't need them any more. As to bilateral mastectomy, there isn't a great hurry to decide what is the right course of action. Lots of women have delayed reconstruction because of radiotherapy. It took me a fair amount of time and counselling to come to terms with my new - and altered self. I totally understand and remember that feeling of bc having stripped away my femininity. I just wonder if, with the passage of time, you might prefer to go the other way and have a reconstruction, or even a bilateral mastectomy and double reconstruction as one younger friend did to protect against recurrence.


it all happens so quickly and unexpectedly that I look back now and it all feels surreal. I am now a couple of years beyond diagnosis and having not - so far - had a recurrence am in the process of reconstruction which makes me feel much more like my old self.
Whatever is right for you, you must do it, but you are at a very scary stage and in your position I might just give yourself a little time and maybe even some counselling before making any decisions until you have absolutely decided which is the right route for you.

For me, that route is everything possible to help me beat this. I want to be around to see my children grow up and that made my choices clear. Sending you hugs whichever way you decide to go.

MG

VJ1
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Make sure you talk this through with lots of expert people and don't make any hasty decisions.

My first chemo was awful too - but at my second chemo when I explained how sick I'd been they changed all my meds, gave me stronger anti-sickness drugs and after that is was bearable. It never going to be good, but you have to concentrate on what a good job it is doing in saving your life and killing all the cancer cells so it won't come back. Ask and see if they can do anything to make it better.

Likewise I was a bit scared of Tamoxifen, and yes when I started on it I had some hot flushes (I'm 39yrs) - mainly at night, but again after 6 months it has all settled down and I vertially have no side effects. Is it not worth giving it a go? If you are ER+ it is such a good drug.

Whatever you choose, hope you find some strength to be positive and get through this. There is life on the other side,
VJ x

Wattie
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Hi Mazza
Well that's an interesting thought on things, I suppose it depends on what your diagnosis was, if you had lymph node involvement, etc.
I personally would not go that route, I have children to consider and I want to watch them grow up and see grandchildren. I want to throw everything at this cancer, and think positively about it not coming back. How do you know yours will come back?
Side effects of chemo are different for everybody and some people manage it very well, also it is such a short time for having it and it can save your life!
Having your ovaries removed would be a chice I would make after a long discussion with my drs as oestrogen is stored and kept in fat so having them removed is no sure way of getting rid of oestrogen in the body.
Just my opinions on things, but you of course are entitled to yours.
Good luck and think really carefully
Karen x
Jo_BCC
Member

Re: Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Hi Mazza1,

Welcome to the BCC discussion forums, I am sure your fellow forum users will be along soon to offer their support. Could I suggest that while you are waiting for replies you give our helpline team here a ring and have a chat with one of the staff, they are here to support you through this. Calls are free, 0808 800 6000. Lines open Mon-Fri 9-5 and Sat 10-2.

Take care,

Jo, Facilitator

mazza1
Member

Anyone decided against chemo and Tomoxifan & chosen ovary removal?

Hi ladies
I hope this post doesn't offend anyone as everyone seems so positive regarding chemo. I am 42 and I have had a mastectomy and I was in two minds whether to have the chemo because of the side-effects and the percentage of safety it gave me. I had one chemo and had such bad side-effects decided it wasn't for me and decided that I want to feel healthy up-to the point that the cancer returns. I researched the effects of Tomoxifan and have decided not to take this either and my oncologist suggested having my ovaries removed. I had a hysterectomy when I was young due to gynecological problems not cancer, so would be okay with having my ovaries removed.
Are there any other ladies out there that have gone down this route?
And regarding the mastectomy, I no longer feel like a women. I don't know if I can go through reconstruction and don't know whether to have the other breast removed, to give a bit of extra protection and just to look symmetrical.
Any comments much appreciated.
Thanks.
Mazza1