Hi everyone. I would really appreciate any thoughts or comments.
I had WLE in Nov 07, Chemo, Rx, Tamoxifen and am currently having Herceptin( no5 next week). I have really tried to be positive, forward looking and looked after myself well in order to get through everything. I am usually a fairly optimistic person and have dealt with things one step at a time and on the whole consider myself to be a balanced and strong person.
However… the last 2 weeks I have felt incredibly angry deep within myself and have become quick tempered,uncompromising and suddenly decided that “enough is enough” and. It isn’t an anger that suddenly explodes or even escalates …it is just there simmering under the surface all the time and it doesn’t feel like me at all.
I have a ton of relaxation cd’s, scented candles,time to myself in fact I have wonderful support from O/H , best friend etc and feel incredibly lucky in a lot of ways.
This said, I just feel that I have absolutely had enough of appointments/waiting around/treatments/ hospitals etc. It is more than “wanting my life back” which I know isn’t going to be as it was before. Things came to a big realisation last week when I had to book an appointment over the 'phone for a heart scan and the receptionist would not give me one in the daytime - only after 5.30pm I completely lost it and told them that in which case I simply wouldn’t go and leave it at that. (I did contact the Herceptin specialist nurse who did eventually sort out a suitable one) .
After this I had a serious think about the lack of personal control,all the things such as being bald etc and all the things that have taken place (medically) , the year that has been "stolen"and I have almost come to the conclusion that what I would like is to say that the minute Herceptin is concluded I would like to make the decision that if I had a re occurence ,to have no more treatment.at all.
I told my husband a couple of nights ago and he was really upset by what I had said and he said I was selfish…what about my family/him/friends etc and that he would never refuse treatment if it meant him dying and leaving me alone. He said he never wanted to hear me say such things again. He is a wonderful man and I love him very much but he has never accepted for one minute that there was a chance things would not turn out right.
I feel bad for causing him this distress and as a result feel I can’t raise it with any of my other close friends/ son etc.
Please has anyone felt the same…did you eventually feel differently…how long did it take to realise that it might be yet another awful phase we all have to go through as I can’t see any other similar threads,
Love V.
Hi V
Just logged on and saw your comments.
I too feel totally and utterly ‘fed up’ (polite words!) of everything that has gone on this year. Unfortunately for me it IS because of a recurrence where the BC has spread to my bones. My treatment for my primary dx was not very invasive, especially as I didn’t have chemo, so I got away very lightly, with an excellent prognosis. It was a weird feeling of not even having had BC as I just carried on after the WLE and rads , basically for the next 4 and a half years. However this time I’ve been hit hard and decided to have chemo even though it wasn’t ‘necessary’ at this stage of my treatment. After 4 months of chemo, which I tolerated reasonably well, I thought I could also just get on with things - albeit with a bald head 
How wrong could I be! Since Sept (when I had last chemo) I have been to see a plastic surgeon (for chemo leak in hand - luckily no skin graft needed), had severe and reoccuring palpitations, spent a day on the cardio ward for this, and am now suffering the after effects of having my ovaries ablated by rads. I am well and truly p*ssed off by all of this and am counting down the days until 2008, the ‘lost’ year, is over.
Having said all of this I would do it over again (except the ovary bit!) if it means it buys me more time - as I have been reassured it will. I really think once you have gone for a few months with little medical intervention (other than Herceptin) I’m sure you will feel differently. I hope you never have a recurrence but can totally understand how you feel right now. All I want to do is sit back with a glass of champagne (which I can’t have because of my bloomin palpitations) and forget this awful year. I expect there will be a lot of us wishing the old year away with more earnest than usual this New year’s Eve!
Just to let you know after my primary dx I worried for the 1st 12 months about BC almost every day. After that I didn’t! It’s always there in the back of your mind but I did what I wanted to do, had fun, drank way too much, had good hols and no regrets. Hopefully you’ll get there too!
Take care
Nicky
Hi V, I was diagnosed stage 4 from the onset so not in your position and only you can decide on what you might do in the future, I’m not questionning your motives, thoughts at all but I only wanted to let you know I have lived with secondaries for 5 years now and my quality of life has been very good. I too had Tamoxifen and then 2 and a half good years with Arimidex. I need no Mac nurse or any other help, no pain killers either. I wasn’t going to reply to your thread at first as I’m not in your position but just wanted to let you know, at the moment, my life is not so changed at all. Thinking of you…Take Care…Belinda…x
Hi Violetta,
It is a hard place to be :(. Now 18 years on from my first dx I would do it again and again. Yes I have had my down times when I just wish I didnt have to go to the hospital, have more treatment, have more scans etc.etc. but other times I am just so chuffed to be here still. I have had it come back several times, and the past 6 years have had extensive bone mets. But I still say life is worth living and am so grateful to all who have kept me going. The past 5 years I have been on herceptin every 3 weeks. I think at this stage in your treatment and dx it is impossible to know how you will feel should it ever recur - but I would say get this treatment over and get out there and live life to the full.
dawnhc
xxx
Hi Violetta!
I do sympathise with what you are saying, as I too feel as if I have “got away with it lightly” - lumpectomy and rads only, finished in September. I suppose none of us know quite how we will react if the bl…dy thing comes back again. Maybe if it does ones reaction is quite different and perhaps people in that situation feel that they want anything and everything going to try and stay alive. I suppose we won’t really know until/unless it happens. But I do think everyone should be able to make their own decisions without pressure from others - I suppose our families just can’t help doing that.
Its so hard to know what we would do if we had recurrences, being smack bang in the middle of chemo at the moment and longing to see the end of this year and treatments, i would say never again could i go through this, but who knows what i would do if i were faced with it in the future and how much tolerance i would have for the treatments against quality of life.
nicky, hope you dont mind me asking, but why do you regret the ovarian ablation? it is something that has been mentioned to me by onc as being preferable to surgery or zoladex, did you have a bad experience with it?
SS
I always say if i am to have a recurrence I hope by the time they find out, that i am near the end and thats it. No treatment just palliative care to ease the pain and discomfort. WHY, because I dont think i could cope living from one treatment to another, the treatment making me ill and quality of life poor.I would hate to have to decide should I or shouldn’t I, Will it or wont it work.
However saying all that, i never thought i would get through surgery and chemo and enjoy my life like i do now.
As has been said above no one knows until they have a recurrence what they will do about treatment.
One thing i do know is i feared getting cancer after seeing friends and family members having breast cancer and sadly most of them dying. I have not found it easy to get on with my life until about 2 and ahalf years after DX, but i have enjoye dthe past 6 months. I am definately not going to live in fear of recurrence.
Just cross that horrid bridge if its one i am unfortunate to have to cross.
I think our choices have a lot to do with our age and circumstances too. A friend of ours is 80 has bowel cancer and has opted for no treatment, its wide spread the cancer, he has enjoyed a few months of life, where as for him chemo would have meant no quality of life.
Now if he was 40 or younger with a young family maybe his choice would have been different.
I just think its so blooming cruel and horrid when people struggle with treatments and the cancer wins in the end.
Rx
Hi Violette
I think you are rasing really imporant issues…which don’t get enough ‘air time’ on cancer forums where the talk to me often feels so relentlessly ‘brave’ and ‘brightsiding’.
I was a pretty healthy 54 year old when I got cancer 5 years ago and I have found the experience of illness which cancer has brought trying, traumatic…in a word ghastly (which isn’t to say that I don’t have good days, enjoy myself, laugh…)
Before my primaty diagnosis I always said that if I got cancer I would never never have chemotherapy(mainly becasue I have a bad vomit phobia and all the media images of chemo which I bought into implied constant vomiting.) And when diagnosed I nearly did refuse chemotherapy…but somehow as you do got swept along with it…and also I wasn’t sick…I was high risk of recurrence and after primary treatment I reckoned that yes I would do chemotherapy again if I needed to.
And so I have…on constant chemotherpay for 15 of the last 19 months for an incurabe and relatively slowly spreading regional recurrence. I have just started my last serious option of chemotherpay…and I daily wonder why. I am beaten up and tired, and the bl**dy stuff isn’t working.
I may well decide to say ‘enough’ soon but the problem is that won’t stop the round of hopsital appointments, the sense of being out of control and having my life ‘stolen’ from me. As cancer spreads it does strange things to your body which you could chose to ignore but its hard…so in my case I’ve had an opertaion to restore my voice(partially) after cancer took that; today I had to rush to hospital for an anti-coagulant injection following the possible sighting of a blood clot in my neck on latest CT scan; on Friday I had to see a physiotherpaist about my ever swelling lymphoedma arm…and so it goes on and it is horrible.
After my injection today I went out for a lovely lunch with some friends who asked whether I thought all the treatment I had had was worth it (I’ve had well over 30 sessions of chmemtherapy now). And do you know I don’t know the answer. I really don’t. In my case I think my survival this far is more to do with initial surgery and a slow (well slower than anticipated for a grade 3 triple negative, spread to loads of nodes kind of cancer) growing cancer than all the chemotherapy I’ve had. In some cases though cancer treatment does extend lives…I’m just not convinced its extended mine in any meaningful quality way…but i don’t know…cause I don’t know what would have happened if i hadn’t had the treatment.
I think so often refusing treatment is equated with ‘not fighting’ and ‘giving up’ and I think those assumptions are so wrong. Treatment for advanced breast cancer is always pallaitive…and that means that it can actually improve quality of life…and for some people for a very long time…for others it worsens quality fo life…and may well not be worth the candle.
With or without treatment I know I’m going to die…just no idea when…today though I had to wryly remind my partner that my DNR (do not resucitate) instructions did not apply to today if I suddenly collapsed with a DVT. (deep vein thrombosis.) I didn’t want to miss lunch in a nice French restaurant.
I remember my 2 and a half years of NED after primary tretament as a blissful time now…and yes I found that feelings shifted and changed all the time.
Personally I find recurrence and the prospect of dying the pits and nothing about cancer redeeming or uplifting. I am sick of sickness, hospitals and appointments and of limited choices and my anger also simmers below the surface but so does my dark sense of humour which I guess is all that keeps me going.
go gently with yourself and thanks for talking about what is sometimes unspeakable of in cancerworld.
Jane
Hi All Found this topic very profound. I always say if i have a recurrence I would not go through chemo and rads again BUT so far it has done the trick for me personally ,Hell though it was . People say for get about it and get on with your life . You cannot do that , due to the fact that there is always a hospital appt to consider or the next mammogram to think about, I personally am sick and tired of it and I have not felt well since finishing treatment. I suddenly feel a very old woman at 62!!! Violetta you are not on your own !!! Always remember that. OH is very scared of losing you and like mine tries to rid me of what he calls my negativity… I call it b/dy fear. WE are all as one on this site never forget that.
Thank God for it. Lots of love Bobbie
Oh Jane
You write so well, just so real and we need more people like you.
Actually i think the people who say ‘no more treatment’ are amazing and I hope i have the courage to say that, as i am not afraid to die. Wont get into the religion, after life eternity etc etc. Also its easy isnt it for me to say i am a primary BC.
Like the lunch in the French restuarant.
Rx
Jane, thank you for your comments, as Liverbird says you write so well and articulate so many people’s feelings.
Hi Violetta,
although I am not having herceptin, I have often wondered how people face up to another year of treatment and admired their stamina and perseverance. I have just finished 3 x surgery ( 2 were minor), 12 visits to the chemo unit, scans galore, rads planning, started nolvadex this week and rads looming ahead till new years day. I think I would feel exactly like you if now going on to more 3 week interruptions and demands on my life. It is a great drug and we are lucky to be offered it now but it is such a big commitment for those taking it. My husband is like yours, never admitting any possibility beyond sailing into the sunset at an old age, which makes it tough when you want to scream maudlin thoughts every now and again. Most upsetting for me was when he said he would never go through what I have and would refuse treatment for himself. This has troubled me a great deal and was like a slap round the face. Does that mean he doesn’t think it is worth it and I should roll over and let it run its unchequered course through my body? I think I have hidden most of my worst thoughts and the gorey bits. He has never seen any of my treatment itself but has taken me to every appointment and had a book over his head for every IV treatment. So he has not seen the worst bits. I think they see us as brave and think why go part way and not finish it. There is also a selfish part that they want everything done so we are there and giving them the hope of normality returning. Also the blissful ignorance that following doc’s orders guarantees a happy outcome. I guess we know too much.
I wish you peace with your decision and it need not be right now. You have broken the ice about stopping so if you do further on he might see it that you have tried to follow his wishes. You could consider asking the onc exactly what benefit you are getting from it and how it would change if you stopped part way through. They might for example say that 10 doses would give you nearly as good a prognosis. I am not sure on this at all, just a thought that entered my head while typing.
I can’t wait to finish and feel like this has gone on forever so I feel for you having such another really long stretch. You will always have support on here and there have been quite a few threads on here about partners insisting on ladies continuing treatment if you want to look them up.
Big hugs and hope you get the right result for you
Lily x x
Hi Violetta,
I have extensive secondaries and when I hear of people like yourself, who have been on Herceptin and other treatments for years,it inspires me to carry on.I’ve been on Taxotere and am now on Herceptin,Xeloda and Zometa and none of it has been as bad as I’d expected.All my tumours have reduced in size since being on the Xeloda and my breast lump is nowhere to be seen! I’m not ready to die yet,there are too many places I want to see! So not carrying on with treatment isn’t an option for me.
Jane,I’ve also got DVT in my shoulder and take daily Fragmin injections.Have done since April with no problems.
Love and best wishes to you all,
Alli x
Hi all,
A very honest and realistic thread. I can understand completely the pressure Violetta is under, as my OH did it to me when I wanted to stop the taxotere. I have since had several discussions with him about the possibility of secondaries, and made it very clear to him that should I develop them, my treatment or refusal of it is my business and he is never to pull the emotional blackmail stunt on me again as it would make no difference if I had secondaries.
Violetta, check out my taxotere thread -Search Results | Breast Cancer Now_5 I must say now that I am glad I did the 4 Taxotere. I know I’ve given it my best shot now, and can only hope it was enough. My NPI is 6.9 though, so we’ll see. If I develop secondaries I know I won’t be thinking “what if I’d just had that last one?”.
Hi Still Standing
Just to answer your question about ovary ablation (sorry it’s going off track of this very open and useful discussion). I’m suffering with bowel problems some 10 days after last ‘blast’ to the ovaries. So not the 2 days of diorrhea (sp?) I was expecting! Please PM me if you want any more details
Nicky x
Hi Violetta - can relate to what you were saying - and for me that’s how I felt for a while but it passed with the passing of time and gradually getting my life back. I also thought maybe I wouldn’t seek further treatment - but in the event of recurrence happening found that my determination to live as long as poss, putting up with a fair amount of stuff, came back with a vengeance.
I do think it takes quite a long time to get over the treatment, after the treatment has finished - physically and also psychologically (and also for your family too) … once I’d got my energy fully back (probably a year after end of mx, chemo and rads had taken a year) and I had a crazy wonderful summer of a lot of activities and travelling on weekends … I then had a very angry and upset phase as did a couple of other friends. Two of us found it helpful to go back to the alternative centre attached to our hospital (Fountain centre in Guildford) and have some counselling which really helped to gradually get some perspective back. (which includes ambivalence, as well as the positive thinking. I don’t think there’s anything wrong with ambivalence, it seems a sane - balanced? - response to a very mixed world/life experience).
A friend who is a dr, was telling me by way of understanding/comfort that she had a period of deep anger and depression two years after a very difficult situation, that in a sense you hold on when you need to and then let go and express stuff later on - a healthy counterbalance if you like.
When I’m feeling down or angry about it, I try to take it in smaller chunks at a time - just one day (or even half an hour) at a time - works for me anyway, also knowing there are other people going through the sheet…
One of the things I did at the alternative centre when I was going through the year of treatment for primary, was art therapy (and music therapy) - I found it helpful to make a lousy picture of when I was feeling angry or down - great at the time, really tearing into that anger, and FEAR, then later actually tore them up, again more healing for the next stage - resolving it.
In the past I’d been a very negative person - the counselling helped me find a positive person - tho it has wavered a lot from time to time, I am happier in my own skin to find that positive person, and it has been good to live with that experience and helped me better cope with some really difficult stuff in my life since then.
So, I hope, for you … hang in there babe (or actually, hang in HERE, because you CAn discuss all of this with us, and being neutral other people, maybe we can ‘be there’ for you here. You don’t have to make a hypothetical decision about something for maybe the future, right now…
Hugs…
Caro
Hi,
Though I haven’t got secondaries and am still undergoing treatment for my primary I have thought about dying and even dreamt last night that I woke up and saw myself lying in bed a complete skeleton, just bones, and in my dream I asked my OH whether he was okay with it, to which he replied “yes”. Trying to speak to him when awake about my fears of this killing me he is annoyingly upbeat (as is everyone else) and seems to just think that once the chemo is done I’ll take tablets for 5 years and BC will be done for us. My fears (perhaps the fact that I had a grd 1 with 1 lymph node involved) seem silly to him and the fact that I might die is ridiculous. Given his approach I dread to think what would happen if I do develop secondaries and feel I can’t carry on with treatment.
I dont imagine its ever going to be a right or wrong decision that someone else can tell you is the right or wrong one to make, only you know how you feel and what you want, but the pressure of other people’s expectations for your life/decisions must be horrendous and I don’t envy you. I hope you can make a decision that you are comfortable with and that you can gain support from everyone around you, here and at home, xxx
Hi Violetta,
Yes, the herceptin treatment is maddeningly long. At times I came close to snapping on it because it felt like the straw that broke the camel’s back. The thing to keep in mind is that the time you spend in treatment now could save your life, so it is an investment in your future, not completely lost time.
As to what you would do if it came back, I don’t know if it is worthwhile thinking about, especially if it is causing tensions with your husband. The cancer might never come back or come back many years from now when there might be more non-toxic treatments.
Hello
Like some here I haven’t got secondaries and am still having treatment for a primary BC. The thought is with me most of the time about secondaries developing, yet like most people everyone says be positive, you’ll be fine, you won’t get it again - and this is so irritating, like burying their heads in the sand.
At dx my bone scan, liver scan and lung xray were all clear, and after the mx recently the surgeon said he “got” everything, and out of 13 nodes NONE had been affected - so my prognosis is 5% of a recurrence. Yes I know that means 95% it won’t but then how the heck does it return when people have just as good a prognosis?
I found the taxotere was horrible and would HATE to go through it again. I just hope I won’t have to, but realistically if I developed secondaries I think I would do whatever was necessary because I don’t want to die!
When the time comes I hope I can be brave enough to say “no more treatment” except for pain relief.
I think we are all scared, so your feelings are normal and also it is difficult to say now what may or may not happen. Our partners and families obviously want us to take as much as we can, but hey its our bodies not theirs going through it.
If the time comes when you have to make this decision (hopefully it won’t) you will do what you feel is right for you and your family must respect that. I know what you mean though, at this stage people around us just don’t want to hear what might happen and how you will deal with it.
xxx
Hi Nicky, everyone has to deal with this disease as best then can, there is certainly no right or wrong decisions or approaches we can only make our minds up based on how ‘we’ feel and what ‘we’ want.
I have just be rediagnosed with local recurrance, which has already begun to spread into my lymph system, so feeling pretty down. I was 40 when diagnosed, and when I finished my treatments last year for the primary (dx March 07, mast, 4 FEC & 4 Tax, 20 rads) I thought thank god that is over I dont think I can ever do it again. But I am. Right now I am facing doing it again and again for the rest of my life, until there is no choices left, until I know it’s time to say enough.
I hope very much that you are never in the situation where you have to make the decision to do it again, and if you are, you will make the decision that is right for you, at that time. What more can we do than that.
Wishing you lots of luck
Nikki