69230members
363466posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Anyone thought about not having chemo?

6 REPLIES 6
Member

Re: Anyone thought about not having chemo?

Thanks Jan, I think you might be right they were definitely pushy! However I've accepted this needs to  happen and have a covid test tomorrow, PICC line on Tuesday then 1st EC chemo on Thursday. I wanted to go the dentist and have my hair cut but they weren't happy postponing.

Thanks for the advice & wishing oyu all the best with your treatment too xxx

Member

Re: Anyone thought about not having chemo?

Hi Jo

It’s probably too late to add that NICE regulations state the chemotherapy must begin within 90 days of surgery for it to have optimum impact (I only just squeezed in by having my first of Christmas Eve!). You mentioned you’d had a long journey compared to others n the forum so maybe this is why they are in such a rush for you to decide and why they have your dates ready? My delay was caused by transferring from the private sector to the NHS.

I hope you’ve been able to make an informed decision and wish you all the best with whatever treatment lies ahead. Jan x

Member

Re: Anyone thought about not having chemo?

 Hello Jan,

Thanks so much for responding so quickly.

I really appreciate you sharing your story, I am so sorry you are on diagnosis 4. To some degree your message highlights my fears that chemo is destructive of the whole body and not always that successful. But you hit the nail on the head about recurrence. If you don't take it you will always question your choice. 

I truly am 50/50 on this at the moment so lots of thinking today. I might ask if they can push it off by a week. I have to say my oncologist was like a car saleswoman pushing this "only available today" offer.

Thanks again Jan, really appreciate it. Best of luck with your treatment xxxx

 

Member

Re: Anyone thought about not having chemo?

Hi Kitkat,

Thanks so much for your fast response, time is certainly of the essence here !

I really appreciate your message and yes I will ask for the rationale behind their recommendations. I guess they are are also restricted by what they are allowed to recommend, as you say there are a lack of clinical trials for any alternatives but that's probably because no-one would pay for them as there's no profit in the final product. Sorry I work in the pharma industry and I'm feeling very cynical...

I'm not at a dedicated cancer hospital but I think I will have a chemo nurse assigned to me.

I'm sorry that your cancer has come back for the 3rd time. I hope you are doing ok, that sounds like quite a treatment path. Again you having taken tamoxifen for 2 years and yet it has still returned makes me question the success of such treatments. 

I know we have to trust that our teams have only our best interests at heart and I do believe in my team, they are lovely. 

Lots of thinking to do...

Thanks again Kitkat and all the best for your treatment xxxx

Member

Re: Anyone thought about not having chemo?

Hi Jo

I don’t think you’re the only person to have considered skipping the chemo - but 24 hours isn’t enough to make an informed decision. My initial diagnosis required a full mastectomy and hormone treatment or a partial and radiotherapy so, by the 4th diagnosis where chemo was essential, I felt railroaded. However, once I met with the oncologist, I understood why it was necessary, even though statistically it made only a small difference.

While I was struggling through (and I really did have a tough time) my other oncologist told me that many of them aren’t convinced about the evidence that chemo makes a significant difference but there was no doubt about radiotherapy. That didn’t make me feel any better as I still had to crawl to the end of treatment lol. However, even though it’s not done me great favours in terms of my health, I am cancer-free and I’m glad I had all of the treatments. It’s quite hard for some people after treatment finishes to stop thinking about the possibility of recurrence. If you’ve had chemo and it’s worked, that fear is reduced. I don’t think I’d be in as strong a place psychologically if I’d skipped the chemo when they’d recommended it. 

I think your concluding comment indicates that, deep down, you know what you’re going to opt for? Whatever you do choose, I wish you all the best,

Jan x

Member

Re: Anyone thought about not having chemo?

Hi Jo

I dont think you are being negative or overstepping....just unsure about what options you've been given and what decision to make and that's only natural.

I don't know much about turmeric but I know my friends oncologist said there is a lack of clinical trials.  Maybe ask yours about their reasoning ??

I asked my oncologist about fasting benefits and was told it could make side effects worse, weaken my immune system and make me more vulnerable to infection .... a d even more of a risk in covid times... I lost 10kgs before starting chemo so need to eat well...but you are not me so again, maybe ask for a rationale ?

I have had dcis twice vefore; 2012 and 2018....the second time a recurrence in exact spot....as it was low grade first tine I was not offered radiotherapy....maybe it would not have come back if I had pushed for rads?? Who knows?  ..but now I have BC for 3rd time I am certainly taking no chances....my new cancer( in opposite breast)  is ER + 7/8 ( even tho I have been taking tamoxifen for 2 years to reduce chances of developing further BC )  and 12mm, grade 2 , 1 lymph node affected.... even without the lymph node I would have asked for chemo option due to my history and my fear of cancer spreading other than lymph nodes eg vascular.

So im having everything they've offered; surgery ( done) , 2 lots of chemo ( 3 months in ),....then 15 rads, biphosphonates for 3 years and 5 years of letrozole.  But that's me , and everyone is different and has a unique diagnosis and it cant be nice for you feeling hurried into a decision.

I have always felt that my team have made descisions about my treatment plan at MDTs, as a collective, which were evidence based, I have always been given rationales a d never felt backed into  corners.  

I find my chemo specialist  nurse really helpful. She phones me every week before treatment and will take time to answer all my questions....are you at a dedicated cancer hospital .  .if so there should defo be a chemo nurse. They know far more than BCNs a out chemo and it may be helpful to speak to yours??

Make sure you get time to make the right decision, because it's a big decision to make either way and i wish you well and send a hug 😁

x x

Member

Anyone thought about not having chemo?

HI,

I, at 48, was diagnosed in June 2020 with IDC grade 3. ER/PR + but HER-2- in left breast. Poor mammograms due to dense breast tissue led to MRI which showed a grey area of indeterminate size. II asked for a mastectomy, they wouldn't recommend it.  Underwent 2 lumpectomies (and 2 nodes removed in surgery 1) as my margins weren't clear after surgery 1 but nodes were clear but they had found DCIS which was the grey area they saw before. The 2nd surgery revealed positive margins so mastectomy was suggested. Asked for an oncotype test which they weren't planning on doing and my score was 46, 20 above the recommendation for chemo.

However in my meeting today the oncologist revealed we always offer chemo for your type of cancer (IDC) for over 50s not usually under and we don't offer chemo for DCIS. Therefore if it weren't for the oncotype test they would have kept with mastectomy and left it at that. They told me that all my sessions had been booked but that it was still up to me and I should make a decision in 24 hours...

Did anyone else feel backed in to a corner or were you all happy to accept/trust that they have your best interests at heart? I felt my oncologist was against any kind of complementary treatments including dietary influences like turmeric and fasting during chemo.

Sorry to be negative and maybe I'm overstepping the mark here but I've had a very long trip from diagnosis to here (with many friends from this forum and other places moving on to recovery quickly in relative terms) and this is only primary breast cancer. God knows what will happen if it comes back 😞

Jo xx