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To undergo chemo or not?

20 REPLIES 20

Re: To undergo chemo or not?

Hi Mazza

It seems like you have made a decision that suits you - and I personally think it is a BRAVE but GOOD decision. In 5 months time the chemo will be over and you wont have that 'what if' hanging over you.

I'm still trying to decide if 1% increase is worth doing?????????

Thinking of you x x x

Re: To undergo chemo or not?

Hi Mazza.....have a look at nhs predict and use the tool to calculate and hopefully understand a little clearer the benefits of having chemo etc. it is very useful and although based on historical statistics (and don't forget they are statistics) may help to reassure you. I was borderline for chemo and after my Onc showed me the graphs and explained the potential 5% benefit I went for it. All the best for your treatment

Re: To undergo chemo or not?

Mazza , the 14.5 % is the EXTRA chance of it not returning, not the ABSOLUTE chance
.
The basic chance of tt not returning even if you have no more treatment at all is likely to be somewhere between 50 -70 %, and the chemo and tamoxifen add an EXTRA 14.5% chance on top of that. That's how they calculate it .

Your oncolgist should go through that with you and explain it clearly.
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Re: To undergo chemo or not?

Hi meemoo
Thanks ever so much for replying to my post and your kind words of support even when you have big decisions to make yourself. I'm sorry too for your diagnosis. I spoke to my bc nurse on Friday and have decided to have chemo. I always thought I would have it as soon as I felt the lump and I think when I found out I was Her2 negative I got a bit cocky and thought maybe I didn't need it but my bc nurse said when dealing with cancer it is a high percentage so I am going to have it. And I'm sorry for the decision you have to make, although we have people around us it's ultimately us who have to decide. I really regret not having immediate reconstruction but I didn't think it through and I just wanted the cancer removed from me I didn't think about the way it would look.
Take care, all the best.
Mazza
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Re: To undergo chemo or not?

Hi Poemsgalore
Thank you very much for replying to my post and your kind words of support. I spoke to my bc nurse on Friday and she said that with chemo and 5 years of Toxifen or Letrozole (had a hysterectomy so they did a test to find out whether I am pre or post menopausal) then it would be 14%. I didn't think that sounded very high but with bc nurse said with cancer it is a high percentage. I never thought I wouldn't need chemo and I think when my Her 2 came back negative I got a bit too over-confident! So, I am starting it in a week and a half.
I'm sorry you have health problems plus cancer, that is a lot to cope with and I'm glad you are getting on alright with the chemo.
All the best.
Mazza
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Re: To undergo chemo or not?

Rachel
Thank you so much for replying to my post and your kind words of support. I spoke to my bc nurse on Friday and have decided to go ahead with the chemo. I always thought I would need it but when the Her2 test came back negative I think I felt a bit too confident! And, I didn't think that percentage sounded very high but my bc nurse said with cancer it is a high percentage. Just dreading having it and all the side-effects that go with it.
All the best.
Mazza
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Re: To undergo chemo or not?

Hi Maire
Thank you so much for replying to my post. Like you I have been provided with information stage by stage and I didn't know what Her2 was and after I looked into it when I found out I was negative I think I got a bit cocky! I spoke to my bc nurse on Friday and have decided to go ahead with the chemo. I know there are no guarantees with cancer and it can return anytime any place. I start it in a week and a half time. I am dreading losing my hair so am going to get it cut short and try the cold cap if I can bear it.
All the best.
Mazza
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Re: To undergo chemo or not?

Hi Mandy
Thanks for replying to my post. I spoke to my bc nurse on Friday and she said that with 4.5 months of chemo and 5 years of either Tomoxifen or Letrozole that there is a 14% chance of it not coming back. From the beginning I took it for granted that I would need chemo. I think I got a bit carried away when my surgeon told me I was Her2 negative! And I didn't think that was a very high percentage but was told by my bc nurse with cancer it is a considerable percentage.
I am starting my chemo in week and a half the oncologist said it will be a moderate strength, am dreading going bald!
All the best.
Mazza
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Re: To undergo chemo or not?

Hi Lola
Thanks ever so much for replying to my post. My tumour was Grade 2 and was strongly oestrogen sensitive and I am Her2 negative. I spoke to my breast care nurse on Friday and I told her that I'd had written all the percentages down but no took anything in! She said that with 4.5 months of chemo and 5 years of either Tomoxifen or Letrozole (as they don't know whether I am pre or post-menopausal due to having a hysterectomy) there is a 14% chance of it not returning within the next ten years.
I didn't think it seemed like a very high percentage but my bc nurse said with cancer it is a high percentage. I start my chemo the week after next.
All the best.
Mazza
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Re: To undergo chemo or not?

Hi Deborah
Thank you for responding to my post. I spoke with my breast care nurse on Friday and there is a 14% chance of it not returning with 4.5 months of chemo and 5 years of tomoxifen or letrozole (have had a blood test to see whether I am pre or post-menopausal as have had a hysterectomy.
I thought 14% was quite low but my bc nurse said in cancer that is quite high. So, I've decided to have chemo.
Thank you for your kind words of support.
All the best
Mazza
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Re: To undergo chemo or not?

Thanks Lucy,
I spoke to one of my breast care nurses on Friday and things are a bit clearer but I think I will ring the helpline on Monday.
Mazza

Re: To undergo chemo or not?

Hi Mazza,

I am in a similar position to you really. I was 40 last week. I had my Mx 4 weeks ago - 2 tumours one is ER+ HER2- still awaiting hormone status on the second.

So far I was told that chemo would only give me a 1% increase in survival - and I've driving myself crazy thinking that is such a small small difference but could I live with the 'what ifs' of not having chemo. BUT, If I had been told it would increase my chance by 10% I think I would be begging them to give it to me.

To chemo or not to chemo is a very tricky decision for some of us to make.

Thinking of you, and good luck x x

Re: To undergo chemo or not?

Hi Mazza,

Hope you don't mind me putting in my two pennyworth. I was disgnosed with Ductal Invasive, ER+, PR+, HER2- and had a mastectomy in December. Tumour was 3cm, grade 3, stage 2b, three nodes removed, one affected with cancer. I was given the option for chemo, and with other health problems (RA, Bronchiectasis +psudomonas colonies on lungs, Sjogren's, the list goes on) they didn't think I would go for it. But I did, and I'm doing rather well on it, probably because I know it's one more piece of armour against the disease. I realise all situations are different and this decision can only be made by you in the end. Good luck with whatever decision you make.

Poemsgalore xx

Re: To undergo chemo or not?

Hi Mazza
Ag age 53 I was given a choice of having Chemotherapy or not for a Grade 3 tumour that had not spread. The percentage benefit for me was 3 - 4% and I have decided against. However, I am in absolutely no doubt that, if the percentage benefit had been 10% I would have decided for. There are risks involved with Chemotherapy but there are also risks if you don't have Chemotherapy and these are very clear to me, having followed the posts on this forum of those who are living with secondaries. Ultimately, however, as others have said far more eloquently than me, you have to make a decision with which you are happy. I am so sorry you are in this awful situation and wish you very good luck with your treatment.
Rachel

Re: To undergo chemo or not?

I am about to sign up for the supremo trial would appreciate any words of wwisdom thanks pam

Re: To undergo chemo or not?

Like many, my own diagnosis was drip fed to me as more info became available. I had a 2cm tumour, grade 2 with no lymph node involvement, though one breast node was affected. Initially I was told I was borderline for chemo. I knew I would have radiotherapy and would have to take tamoxifen. I was very anti chemo but as my appt with the oncologist drew nearer I had decided that I was going to have chemo as I didn't want to be sitting back in that office in 1,2 or 5 years time with secondary cancer not knowing whether chemo could've averted spread. When I met the oncologist she told me the tumour was her2 +. This was the first time this had been mentioned and I didn't acutally know what it meant. Apparently several test were done on the tissue before a positive result appeared. The appointment with the onc was pretty scary as i had no idea that chemo could actually kill you. Despite all that i decided to go ahead. Chemo was nasty but I got through it one day at a time knowing it was finite and that I would feel better unlike people who have to live with chronic conditions for the rest of their life.
I have met a number of women who have had their cancer recurr very shortly after going through all this horrible treatment. I have gone from someone who felt quite optimistic about today's prognosis for people with breast cancer to someone who realises that there is a chance it will kill me one day. So I'm glad that I have done all I can to fight it.
Other people decide against chemo for very good reason.
No-one can really advise you what to do. It's your decision. I'm just sharing my story to give you my own perspective.
Good luck.

Re: To undergo chemo or not?

Hi Mazza
Like you my surgeon removed my (the!!!) tumour and it wasnt in my lymph nodes. As mine (it!!) was Grade 3 and over 2 cms it didnt occur to me that I had a choice. It was suggested that I have FEC T and I agree with Lola that 10% is enough for me. I'm 47 with three young children and frakly I will throw anything at this b**tard disease. so much so that I am also on the Supremo trial (radtiotherapy). I'm sure that if it comes back it will, but it wont be because I didnt do what I could to stop it.
Chemo wasn't a walk in the park by any stretch but I'm done with it now.....
I think it's a very personal choice, you must make your own decision....so just sharing what I've done and would do, hope that I never have to but would.....
Good luck with your decision....
x

Re: To undergo chemo or not?

Hi Mazza,

10% is one hell of a big improvement with chemo! You don't say what grade or size your tumour was, what type, or whether it was hormone positive or negative. These facts are important when making your decision. Your nurse may be able to tell you what your surgery histology report said, but my advise would be to ask for a copy of it - these professionals can filter out bits of information that later you wish you'd had. If the nurse is awkward about giving you a copy, you can get one from your GP.
As far as I am concerned, and on just a personal level, having chemo was a no-brainer. OK it could be 6 months out of your life where you have to put everything on hold, but if that means you have a 10% more chance of it not recurring in 10 years, then snap it up is my opinion! However, it is obviously your own choice and you must do as you see fit after speaking to the professionals again.

Good luck!

Re: To undergo chemo or not?

Hello Mazza1
I'm not in exactly the same situation, as I've not been given a choice about chemo, but I can emphathise about being given these big decisions to make. I've also been sat in meetings thinking its all fairly clear, and the realised afterwards that there's something I'm not sure of. I hope that your BCN is able to help clarify things, or if she's not able to she may at least be able to pass your qestions along. My experience to far has been that where the consultants give you a choice, they do actually want you to have the support to make it, so I hope that's the same in your case.

On the chemo itself, 10% seems like a sizeable advantage to me, but to be honest I don't know how the figures stack up really and I haven't had that sort of information in my own case yet.

Wishing you all the best!

Deborah

Re: To undergo chemo or not?

Hi Mazza1

Whilst you await replies please feel free to call our helpliners to talk through your concerns, lines are open 9-5 weekdays and 10-2 Sat on 0808 800 6000

Take care

Lucy

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To undergo chemo or not?

Hello everyone,

I am new to the forum so bear with me! I am 42 and had a full mastectomy (without reconstruction) 4 weeks ago. No cancer was found in my lymph nodes, I am Her2 negative and the surgeon who was brilliant and said that he had removed all the cancer with the mastectomy and I don’t have a family history of cancer. As soon as I felt the lump I had made my mind up that I would have chemo. When I saw the oncologist yesterday I had a terrible migraine and had written things down on my notepad and I can’t remember what the figures refer to, so I am going to speak to my nurse tomorrow to confirm, but I think the oncologist said there was 10% more chance of the cancer returning within ten years if I don’t have it. I am well at the moment so now I am thinking should I undergo chemo or not? Is anyone in the same boat? I really regret not having immediate reconstruction and I don't want to make another bad decision.
Mazza1