who said no to chemo and y

hi all.
I am totally confused but as read more threads i see people do actually refuse chemo… My story is…I had invasive duct grade 2cancer with 1.4 lump so lumpectomy and sentinel node biopsy and rads after. But they found dcis in margins so advised mastectomy. As no rads needed i could have reconstruction straight away.Lymph was clear. I went ahead on 6th. I went back a week later to see another consultant as mine was away. I need hormone tablets for 5 years as expected and now recommends chemo due to my age 49 and herceptin. Wow what a shock they never mentioned chemo at any stage before .I saw my consultant last week he didn’t think i needed it… I now have apt to see oncologist on 17th Jan so will see what they say, but i would like to hear from people who have refused it and y. I didn’t know this was a done thing. I do have hectic life although don’t work I holiday a lot and look after my grandson while daughter works. They r looking at getting childminder but its all cost etc. thanks in advance to all. TAKE CARE JULIE

Hi Julie
I thought long and hard about chemo, I had a successful lumpectomy, margins clear, no lymph nodes involved but it was grade 3 so advised chemo. My oncologist didn’t tell me the statistical improvements offered by chemo, but when I found out that you could get this info she did look them up and I felt it was significant in that it improves my chances of survival after 10 years by almost 8%. Do you know yours? I am 43 with a one year old and a seven year old, and had just taken on a new teaching post with added responsibilities. I am the main breadwinner as partner looks after one year old, and family are 200 miles away, so I know what you mean about not having time to do chemo. However I reasoned that if I broke my leg everyone would have to cope, and I couldn’t cope with it coming back if I hadn’t taken every precaution. I reason it’s 6 months then we are going to have a fab holiday! Good luck with your difficult decision and let us know what you decide.
Sharon x

I had the lumpectomy first…then 10 days later the mastectomy…didnt have a choice for when it came to treatment…it was chuck everything at me…pick up your life in 12months time…so thought fair one…ill give you 12 months of my life…if you can try to give me minimum 10 years back…which i thought sounded a fair one to me.

hi to you both
Thanks so much for taking the time to reply after reading your replies i think you are right. i will ask oncologist the statistics when i met him on 17th. these survival figs confuse me. is it that the same cancer can come back or a secondary. increase survival rate after 10 years by 8 percent etc. i don’t understand am i thick or will it all seem right on the day… i thought it was gone taken everything and lymph clear. thanks again

End of the day chick…the decision is yours to make…but from my own personal point of view…id take whatever they offer you…be it 7% or whatever…its only a few months out of your life which could give you a bit longer before it might or might not come back. I had stage 3, with 5 lymph nodes involved…so i took the works. Im er pos and pr pos but her2 neg…so i had the works barring herceptin as my test for that came back negative.
Its a tough decision to make, and only you can make it.

Hello Julie

I was told that chemo would improve my chances by only 3% or 4% but I decided to have it . I thought - well if the cancer does come back then I shall know that I have tried everything. Chemo isn’t nice but it is ‘doable’

If they’re suggesting Herceptin for you then that means you must be HER2 positive. If so and you don’t want to miss the chance of having Herceptin treatment - I may be wrong - but I believe that Herceptin can only be given if you’ve had chemo.

Good luck with your decision
Anthi x

Hi Julie,

I saw your reply to my post on the other thread - I just thought I’d mention that I’m HER- so wouldn’t benefit from Herceptin, but I’ve read that you can only have Herceptin in you have chemo.

Going back to what you said about oncs’ differing opinions - my partner and I felt that he had to offer it, whether he thought it was of any benefit or not. I actually said to him “are you screaming at me to have chemo?” and he just said “no, not at all, it’s just one of your options”. As I said, I felt the additional 3% (and this is statistical) was not worth the upset to my partner, children and stepchildren. I feel 87% survival with tamoxifen (and no lymph or vascular involvement) is enough for me.

Good luck with your appointment with your onc and keep us posted - it never ends, does it?!

Love,

Sally xx

Hi Julie
Sorry to hear you are confused - who wouldn’t be!
If it’s any help - I’m grade 3 & ER Neg. Had a mast on 4th Dec Still waiting for my HER2 results & hoping that I will be able to take Herceptin my stats were: 50/50 chance of surviving 10 years without any further treatment. 65% chance if I have cheme & rads which rises to 68% if I have Herceptin.

The way I see it is that I would like to see my daughter married & have children before I ‘pop my clogs’ & any increase in % has to be a bonus.

If i’m rambling - i apologise, probably 1 too many whiskeys. Life is precious make the most of it.
Take care everybody
Love Thelma xx

Hi Julie, if you are her2 + they will want to give you the chance of herceptin and therefore I think you have to have had chemo first, or alongside it. Grab it with both hands I couldn’t wait to start on chemo I was so scared I would have drank rat poison if it gave me even a 1% difference. But… that is me. I was a busy busy person too but sod all that. Nothing is worth your life. Chemo is horrible stuff but when I was going through it I had the small satisfaction that I was hopefully zapping 'owt that was lurking. Good luck and I hope you make the right desiscion for you. This is only my opinion lots of love to all of you out there happy new year as well Love Eileen

8% increase in survival after 10 years means:

8 more people in every hundred will be alive rather than dead. The 8% on its own doesn’t tell you whrther 50 people in every hundred will be alive anyway or 80 in every hundred or…or… I think you kind of need to know both figures. I think those of us who do chemo do it just in case we are the 1 person whose life might be saved.

(and the 10 year survival figures don’t tell you who’s alive after 11 years.)

Jane

Hi Julie

I had grade 2 and 1 lymph node affected, I am also her2 and ER+ - my onc told me that if stopped treatment at the lumpectomy stage, I would have a 50% chance of it coming back within three years. He then told me that if I added chemo the equation, my stats when up to about 65/70% of no recurrence within ten years, then he added herceptin, rads and tamoxifen to the equation and my figures were up to about 93% of no recurruence within ten years so for me, anything, ANYTHING they can do to help me is gratefully accepted. If you need herceptin which you wll do if you are her2 then you will need chemo - herceptin really does help us her2 women. But this is something you have to weigh up for yourself if you’re only gaining a tiny percentage, it’s for you to decide as chemo does take it out of you there’s no denying it, but… it’s what you get back that you have to focus on. Good luck to you and happy new year, hope it’s a better one, Carrie x

Hi Carrie
Thanks for taking time to reply. i am her2 pos but what is this er plus i don’t know about this one. all the help you ladies are giving is gt and i know a bit more to ask when see oncologist and the two together will make up my mind… i though about it last night and maybe its because i am her2 pos that they want to give me chemo then i think again and think its gone and clear… must try and do something to stop me thinking. i feel i have made gt progress today as i have managed to wash and hair dry my hair first time since mastectomy and recon although hairdryer seemed heavy and new boob still swollen so got in way hanging over bath.x juliex

Julie,

Er+ means that your tumour reacts to oestrogen (the ‘e’ is because Americans spell oestrogen without the initial ‘o’ so er stands for something like estrogen receptor). About 80% of breast cancers are er+. This is treated with hormone treatment - either tamoxifen or an aromatase inhibitor (such as Arimidex) - depending on whether you are pre- or post-menopausal. As you say you will be having hormone treatment for five years, this means you must be er+.

You say you are due to have herceptin. Herceptin positive tumours are much more aggressive tumours, and much more likely to recur, especially in the first three years. BUT - if you have herceptin, it brings the recurrence rate down to the rate of herceptin negative tumours. ie it is wonderful stuff! However, as others have said before, I understand that you cannot have herceptin if you haven’t alrady had chemo.

The herceptin test takes longer to come back than other tests - it is possible that the result has only just come back which is why they are suddenly talking about chemo for you.

I think you are confused about the cancer having ‘gone’. The surgery will have removed the lump, but there is no guarantee that there aren’t some microscopic cancer cells lurking somewhere else in your body. All the other treatment (hormones/chemo/herceptin/rads) are aimed at zapping those, if they exist.

Hi Julie

I agree with what roadrunner just said above, but my onc said to me i may well be lucky and the cancer may well be gone now, as it may well be gone for you, there is a chance your own immunity can kill off any random cells… BUT the treatment we are being offered is called ‘adjuvant’, which i think is like precautionary treatment - to higher our chances of the cancer not coming back. He said to me, you may be lucky and in the 50% group that has no recurrence but did i want to take that chance, no way, it was too high for me, 1 in 2 chance of it coming back. I was amazed and felt so much better when he showed me what my chances were if i added herceptin (for her2 cancer) and tamoxifen (for ER+ oestrogen positive) and radiotherapy - it made so much sense for me to go the whole hog and have whatever they felt was best. I was pleased when I first learned I was her2 because like many women at first i thought oh great that means i can have that amazing new drug… but when i learned her2 cancer was more aggressive adn spread more rapidly, that put me on a massive downer. I spoke to my bc nurse and onc and they assured me that with herceptin i will have just as good a chance of no recurrence as those who are her2- But the downer is it’s another 12 months of treatment… still, small price for no recurrence. I still worry obviously, like we all do, i had a small lump and it had already got into the sentinel node by 6mm, no others nodes involved, so i sometimes scare myself i’ll be in the unlucky group and it will come back. It is living with this that is hard i think. I love this board and get some amazing advice from the incredibly supportive women on here… but sometimes i find it makes it even harder being on here because i read lots of other women’s stories who have had such terrible times with secondaries and well… then the fears come back. I guess you have to remind yourself what your specialists have said, but even then, you take the treatment, you do your best to be healthy and stay positive, ultimately that is all we can do… try to take it a day at a time and stay positive and and as focused as you can be. There are lots of wonderful opportunities and days out there for us all to experience… i guess the best thing you can do is to try to live for now and not dwell too much on what might happen… none of us know! Sorry for waffling on here… hope a little of this helps in some way. Hope you have a good day lovely, carrie x

Hi Everyone,

I feel I have not been off this computer for hours and I have replied on several threads yesterday and today. I have gained so much information and strength from all you cancer babes.

If it was me making this decision I think 1/2 percent statistically in your favour you should grab with both hands, but only you can make that decision, be strong and make the right choice for you. Nobody knows whats in store for you in the future and nobody can give you any guarantees of future outcomes. Cancer is the most feared condition known in my opinion and frightens the s…t out of me. So live for today and have faith that you will make the decision best for you and your family.

Big cyber hugs and strength ((((((((x))))))))

GillMc xxx

Just to balance things, I went the other way - with metastases identified I refused surgery and am concentrating on controlling with chemo, hormonal treatments and supplementation. At the end of the day, it is what you yourself are comfortable with that matters.

Hi Julie
I’ve finished all my treatment except for ongoing herceptin. My tumour was over the 2cms and was a grade 3 so i was in the group which might benefit from chemo before surgery and I had differing views from the oncologist and the surgeon about which way was the right one for me. I found this quite difficult because in those early days of diagnosis i was looking to them for certainty that they couldn’t provide. in the end, I felt so much more confident about the oncologist’s explanations of the neo adjuvant chemo that I opted for that. it worked really well for me and so I’m confident that i made the right decision. If, however, it hadn’t worked so well, i’m sure that i would now be looking for someone to blame - it’s only human nature after all.
My biggest regret is that I didn’t understand how they worked together as a clinical partnership. it turns out that the onc and the surgeon meet every week to discuss cases and agree on the course of treatment. Had I known that i would have felt more confident about asking the surgeon why he was still recommending surgery and the onc why he was still recommending chemo. in fact i think i would have liked to see the notes from their discussion of my case.
I’m not saying that you’re going to get the same issues coming up, but if you do get conflicting views about having chemo or not, I would suggest that you find out whether the consultants talk to each other about individual cases and if so what the discussion has been about your options for treatment. Don’t worry about asking them about how they work - inmy experience they love to talk about it!
Hope this helps - good luck!
Sarah
XXX

Hi and thanks to all
I on reading this am sure its right to go through it. then i wake up next day and think its a lot of time and inconvenience going through it. so basically i still don’t know perhaps when i get stats it will help. i just want to go back to normal if ever i can i know its different now but it seems like a lifetime and only been since Sept. how brave everyone is on here i am not very good at being ill and i don’t want sympathy or people asking how i am and thetas getting hard in a small village. even more so if i loose my hair… but i have to think of me… now something i am not used to do either. thanks again…