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to have chemo or not

11 REPLIES 11
LottieLou80
Member

Re: to have chemo or not

So happy to hear about your mum,what great news.

 

I have decided against it, my head and heart say no and my mind just isn't in the best place to be able to go through it now anyway with the loss of my dog, its all just to much. I'm happy and feel a massive weight has been lifting off my shoulders by saying no. 

 

It would have been nice to not have felt bullied into having Chemo just to have herceptin. Maybe one day we can get given the choice of having it just on its own, fingers crossed as it does sound great! 

 

Thanks for replying

 

Hope you are well xx

budcat
Member

Re: to have chemo or not

Hi all
Lottilu80 I too found myself in this position and I decided to do chemo mainly because of the her2+ . I started chemo yesterday with herceptin and to day I'm fine.
As people saying you should take chemo I would think it only because they believe it to be best for you. But the only person really you can listen to is yourself and instinct.
On a positive note my mum had breast cancer when she was 48 she had mastactomy but no rads or chemo and shes still alive and well at 85. I wish you well and im sure you will make the right decision for yourself.
Budcatx
LottieLou80
Member

Re: to have chemo or not

Hello

 

I'm in the same boat as you, I literally can't stop crying and stressing myself out about it. I was diagniosed on NYE, I have since had a double mast and immediate reconstruction (feb 4th) since the operation I have lost my job through redundancy (nothing to do with my cancer) and I had to have my dog put to sleep after being with me for 11 years. I have never felt so low in my whole life, I used to be such a different person but now I'm a wreck. The thought of losing my hair after loosing everything else in the last 4months feels me with dread, I made the decsion NOT to have chemo and I was happy with that but I feel guilty because everyone tells me I should have it. It has gone past the 12 weeks now where Chemo is effective so I think to myself whats the point in putting myself through it all if its not going to work. Its only because I have been told to have the Herceptin that I keep telling myself I should have it. 

 

I'm HER2 Positive, Grade 3 but my nodes were clear but I also carry a TP53 gene which is a cancer causing Gene. My mum has just had a mastectomy 3 weeks after me (she has had cancer 3 times and also sarcoma once)

 

The word Chemo makes me feel sick, walking to the hospital for appointments I sweat, clam up, turn into a horrible nasty person, getting an appointment in the post makes me cry for the rest of the day.

 

I meant to be having the Chemo talk and the first session on Wednesday and I just don't know what to do

 

Is there anyone who has decided against Chemo out there and never looked back??

 

Thanks for reading xx

EAM28
Member

Re: to have chemo or not

Hi budcat,
Everyone has pretty much covered it here but just thought I'd say that mine is also ER & Her2 positive,10mm,grade 3,1 out of 8 nodes positive & they gave me my treatment plan from diagnosis - chemo,herceptin,rads & tamoxifen for 5-10 years & never really questioned it. Just want everything thrown at it xx
budcat
Member

Re: to have chemo or not

Thank u for all your comments. You have helped a great deal.
Wildpurl
Member

Re: to have chemo or not

Hi budcat, my tumour was 22 mm, ER + 6/8 and I had one node affected. I was also asked to discuss benefits of chemo with the oncologist and in my case adding chemo to the hormone therapy would result in a 5% further reduction in the risk of recurrence. For me this was worth doing, so I have just started a course of chemotherapy this month.
I would also say that there are other things you can do in the way of diet and exercise which are shown to reduce the risk of recurrence and I intend to do those things as well. I took the view on chemo that I would rather go through it now while I can still be cured, but it is a very personal decision and when you know all the facts I think you will be able to decide what is right for you.
kerelene
Member

Re: to have chemo or not

Hi it is a big decision, my cancer was also ER and HER2 positive, the Dr showed me my stats in adjuvant online and predict software.

The stats (for my age) were 74% survival rate at ten years after just surgery, chemo and radio therapy etc increase this to 85%, for just an 11% benefit I might not have put myself through chemo, but as lakeslover mentions you can't have herceptin without chemo, and the risk of recurrence without herceptin if you are HER2 positive is 45%. This was the deciding factor for me to have the chemo. And yes chemo is gruelling. But you can get through it.

I explored lots of 'alternative' treatments but none of them had large scale trials to back up their efficacy though there were many anecdotal stories of people who succesfully overcame cancer without chemo through diet etc, but these were different individuals with different cancers from mine. I felt it was too big a risk not to have the chemo and herceptin though I really didn't want to.

I have found that complementary therapies such as those offered at the Haven (if you are lucky enough to live near one) really help, they do counselling as well.

why not prepare a list of questions you want to ask the oncologist, work out what you need to know, and ask for time to decide after the appointment if you need it (they will probably be keen to get you started on chemo).

Very best of luck whatever you decide.
budcat
Member

Re: to have chemo or not

Thank you ,I will bear that in mind although I'm not to clear on the drugs they are going to give me.
budcat
Member

Re: to have chemo or not

Thank you for your comments. I see my oncologist on 8th may hopefully will of made up my mine. I went on this predict site which I'm not sure helped .
Good luck with rest of your treatment. You brave lady just hope I can be that brave I'm not so sure.
Lakeslover
Member

Re: to have chemo or not

When you talk to the oncologist they will be able to tell you the average survival with and without chemo if you like. That helped me make a decision. In my case the benefit was around 1% and I decided not to have chemo.

However I think in your case there will be much bigger benefits. I was not her2 +ve. I believe if you are you must have chemo in order to also have herceptin, and there are likely to be significant benefits from having herceptin.

Mrs_Moomin
Member

Re: to have chemo or not

Dear Budcat Of course the final decision is down to you but here is my experience. I was also stage 2 but had a larger tumour and 1 cancerous lymph node. My oncologist explained that, whilst surgery had removed all the detectable cancer, chemotherapy attacked any undetectable cells around the body, thereby minimising the chances of recurrence. I therefore saw no option other than to have chemo. In addition, like you, I am hormone positive and after being told HER2 negative have been told that I am positive after all. My understanding is that HER2 positive cells can also cause cancer to spread more rapidly. So again, there was no doubt in my mind about having chemo. I am about to have my 2nd treatment and can't pretend that chemo isn't gruelling but I feel it is worth it if it prevents or at least significantly reduces chances of recurrence. Good luck with whatever you decide.
budcat
Member

to have chemo or not

I have just been told that my small cancer 8mm stage 2 with clear nodes has been removed
And I will need radiation but they want me to see oncologists before decision is made for chemo or not my tumer is Her2 positive and was hormone receptor positive. How am I able to make a decision weather to have chemo or not I'm so scared of mailing the wrong choice
Help?