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Struggling to complete adjuvant chemotherapy

29 Nov 2019 07:18

Hi, I'm reaching out to anyone who has experienced this: I'm 45 years old, diagnosed in June with early stage invasive breast cancer, had lumpectomy in August, strongly advised to have chemotherapy after Oncotype DX results. Started chemotherapy early October and have reached  the half way stage but am having a massive wobble. Feel like I cannot continue with it. I have massive issues with the whole procedure, anything medical is a real challenge for me. I am a massive  over thinker and need to know the ins and outs of everything but having this knowledge makes me feel worse about the chemotherapy. Knowing what it is doing to my healthy cells is a devastating thought. But the worst part is not knowing if the chemo will have actually done any good. I always had doubts about going ahead with it because of the uncertainty of ever knowing if it has worked. But I managed to keep a lid on that doubt up until now. And now my head and my heart are shouting STOP! I've spoken to the specialist nurse who was amazing and reassuring and supportive. She suggested posting on a forum amongst other things. So I'm giving it a go. Ultimately I know there is only me who can make the decision but I Would really appreciate your views/experiences. 

C x

Struggling to complete adjuvant chemotherapy

30 Nov 2019 18:16 in response to Caroline1974


i also had adjuvant chemo...although I was early stages and they got clear margins my onco couldn't rule out stray cells....I had invasive ductal carcinoma...

by my 4th cycle of fec my side effects were in danger of becoming permanent ...neuropathy being the worse onco actually advised me to stop ( I didn't need persuading)! He said the 4 cycles would have stood me in good stead.....

when is your next onco appointment? It's him/her you need to be talking to, they are the ones who are better placed to advise you...are you on fec all the way? Or swapping to T? Xx

Struggling to complete adjuvant chemotherapy

30 Nov 2019 18:28 in response to Marlyn

I'm on EC for 6 cycles. Completed 3. I'm meeting my consultant a week on Tuesday to discuss my options. If 4 cycles is considered sufficient then I could probably push myself to that. If I can get control of my doubts about it all and get control of my anxiety too I might be able to soldier on. It's not the side effects it's my mind that's stopping me. I'm so sorry to hear you had such bad side effects. Hopefully my oncologist will be able to advise me the best course of action. Thank you for your response xx

Struggling to complete adjuvant chemotherapy

1 Dec 2019 18:54 in response to Caroline1974

Well done for reaching half way. I hit a brick wall half way I think it's probably very common. Your doing amazing. I kept a countdown and you had will do this. I found a inner strength to carry on I don't know how but I did. Wishing you lots of love and sending you some love. I found that doing a small walk every day and planning a little job to do kept my mind from thinking too much about what was going on around me. X

Struggling to complete adjuvant chemotherapy

1 Dec 2019 19:11 in response to Positvegal35

Thank you, it is reassuring to hear other people hit a wall half way through. I expected to feel positive at the half way mark but have found it to be the opposite so it is good to hear this is not uncommon. Having heard other people's experiences has helped me gather my thoughts and feelings about the situation and I now feel more at ease about seeing my oncologist to discuss my options. 
I have been keeping busy (when I have the energy) I have horses so they are great motivation. Plus I love Christmas so I have been shopping online for that too. I was literally doing ok until 5 days after my 3rd treatment when I just cracked!!! Thank you for your kind and positive words xx

Struggling to complete adjuvant chemotherapy

2 Dec 2019 18:39 in response to Caroline1974

That's about the time I cracked up and couldn't see the end. Glad you are keeping busy with your horses and Xmas. The end is getting nearer every day. Take care and stay strong x

Struggling to complete adjuvant chemotherapy

2 Dec 2019 19:38 in response to Caroline1974


I hit a wall half way through my chemo, thought I can't do this. Like you started to question what it was doing to the good things in my body and whether I'd made the right decision to do it in the first place. It sounds like it's quite common to have wobbly bits as you are going through treatment. (btw I also had the same wobble at the end of chemo as well).

You've done amazing to get to the half way point, try and look at how far you've come. You are closer to the end of it than the beginning. I hope you can come to the right decision for you.

take care


Struggling to complete adjuvant chemotherapy

2 Dec 2019 19:57 in response to Caroline1974

Hi Caroline, I had a similar wobble after my third chemo.  Having my fifth one this week and feeling a bit better now that I can see the end. Do you have a Maggie’s centre nearby? I did a relaxation class & the look good feel better class today and feel like they’ve given me a bit of a boost to get through the last two treatments.  Hang in there, you’re already halfway through.  All the best, S

Struggling to complete adjuvant chemotherapy

3 Jan 2021 20:50 in response to Caroline1974

Hi , I had a right hemi colectomy for stage two colon cancer the end of October and it has been advised that I have adjuvant chemotherapy in the form of 5FU IV weekly by 30 weeks . I am finding myself considering not having it as in the pandemic setting the thought of another 8 months in probably quite restricted protecliving due to risk of infection overwhelming . I would love to be taking the vaccine and moving on with my life . Seemingly  there is a small percentage of my type of cancer cell that could grow elsewhere in my body which would be difficult to treat . The vast percentage of people do t actually need  this chemo but they can't tell which group anyone falls in to . I had to decide yes or no on the back ground of the group oncology recommendation . That is long winded and probably reflects my uneasy mind . I am most afraid of my hair thinning or falling out as I always had a thing about my already thin hair . Has anyone here gone through 5FU chemo for colon cancer and if so how did they feel and manage on it symptom and emotionally as it's a long haul ?



Struggling to complete adjuvant chemotherapy

20 Feb 2021 17:01 in response to maryod

Hi Mary,

Firstly I hope you, and all others on this thread are well.

I too have just undergone surgery for colon cancer and am blessed to have been told that the histology showed no spread to lymph nodes or surrounding tissues, so stage 2. It was however an aggressive cancer, so I am due to have adjuvant chemo, though don't know at this stage what that looks like in terms of duration and drug. 

I wondered if you went ahead with yours and if so, what the experience has been like so far? I was surprised to read you were facing 8 months worth of treatment, it's understandable you were daunted by such a long course of treatment. 

Struggling to complete adjuvant chemotherapy

20 Oct 2021 21:58 in response to rubberyduck

Hi rubberduck.

I'm also in a very similar situation as your self and wondered how you was getting on?

I had a resection in August and was told I'm stage 2 but my cancer was moderate, and was advised I wouldn't really need chemo as they said it wouldn't benefit me much, I chose against this advise and opted for chemo because of the worry of recurrence, I'm two days into my first cycle of capebentine tablets and so far I feel ok just not sure if I should go the full 8 cycles incase I do unnecessary permanent damage.

I hope your doing well and just wanted your opinion.



Struggling to complete adjuvant chemotherapy

20 Oct 2021 22:39 in response to Gary2021

Hi Gary,

I'm sorry to hear about your diagnosis, but take comfort in the fact it was caught early, and your prognosis is excellent. It's a really scary time, and you'll be working through the anxiety for a while to come. 

I didn't need chemo in the end, as the histology showed a PMS2 protein deficiency, which, without drowning you in information, significantly lowers the chance of recurrence. it also means the standard chemotherapy treatments were less effective so the benefit was virtually nil. I am at 9 months cancer free. 

Until I had that information, I was all set for chemo as I wanted to do everything I could to stay healthy, so I understand your position entirely. I am also a younger man, I turned 33 last week, and am planning on having a family, so chemotherapy was rife with risk for me. Ultimately the 0.5% difference in my already excellent prognosis wasn't worth risking infertility for me, but it wasn't an easy decision.

I would say follow your instincts, listen to your doctors, and remember that if it gets too much, you always have the option to stop. Ultimately catching colon cancer early is great news, and there's light at the end of the tunnel. You've got to do what will give you peace of mind. 

I hope that was helpful, and I wish you all the best for your recovery. 



Struggling to complete adjuvant chemotherapy

20 Oct 2021 23:14 in response to rubberyduck

Thanks Pete, 

I Appreciate your reply, I'm lucky to already have a 7 year old boy at 44 and understand your predicament I can't imagine what I would have been like if this had happened before he was born so I guess I'm very lucky.

Thank you for your advise it means alot and I wish you all the best for the future  

Struggling to complete adjuvant chemotherapy

14 Nov 2021 16:50 in response to Caroline1974

Hi Caroline, i have just had my first round of EC for breast cancer. I feel exactly this and in all honesty don't think i can even face a second. It goes against everything i think & feel. I have managed to negotiate Herceptin next time when i should have chemo 2. Herceptin sounds gruelling enough. I wondered what you decided to do & how it went? I had a mastectomy, lymphs clear, cancer got. I cant get my head around this physical hammering on the basis of one possible rogue cell & the belt & braces approach as they call it. 
I wonder if anyone has just had one round. Xx

Struggling to complete adjuvant chemotherapy

25 Nov 2021 09:05 in response to rubberyduck



I, too. have recently had a stage 2 diagnosis and had the cancer removed from my colon in October. Pathology found microscopic cells in a blood vessel after surgery. My oncologist has basically left it up to me to decide whether or not to have the chemo (Capecitabine tablets) after telling me that because it's a low risk of recurrence, I have only a 1 in 30 chance of benefitting from the adjuvant treatment. So I have to weigh up the risk/reward 'thing'.

How are you getting on?

Struggling to complete adjuvant chemotherapy

25 Nov 2021 12:19 in response to drobinson9

Hi Drobinson9,

I'm good, thank you. Though I'm sorry to hear of your diagnosis, I'm delighted it was caught early. It's a difficult decision you face, one that shouldn't be left in our hands, in my opinion. I struggled with it for a long time. Even after deciding not to proceed with chemo, it weighed on me. Did I do the right thing? 

So far so good for me. I have my year scan in January. My situation sounds like it may have been different to yours, I was looking at more like 1/100 for chemo efficacy. My tumour had a PSM2 gene deficiency, which lowered the odds of recurrence dramatically. I don't think I had any cells in my blood vessels, though I'm not certain. 

Ultimately for me it was a case of weighing up pros and cons. Risk of infertility was a big factor for me, I was 32 at the time and looking to start a family. Still working towards that goal. Had I already had my children I might have gone the other way. Chemo is no picnic, but there is also a strong arguement for doing everything you can to ensure a cancer free future, though that's never guaranteed. 

Whatever you decide, try to accept you did the right thing for the right reasons, and don't second guess yourself. Counselling also helped me massively in this regard. I wish you all the best for the future, and that this will be a distant, albeit unpleasant memory. 


Struggling to complete adjuvant chemotherapy

25 Nov 2021 12:56 in response to rubberyduck


Good to hear that you're doing well. Long may it continue! Happy

My cancer was actually a Stage 2, T3, N0, M0. No nodes involved. I keep reading on the internet that surgery is usually sufficient for stage 2 but I'm thinking that the belt and braces approach may be best for me. I'm 63. My dad passed away with bowel cancer at age 70. No idea if this is hereditary but I've already made massive changes to my lifestyle that I intend to maintain from now on. Lost loads of weight (2 and a half stone and 4" off my waist!), haven't touched a drop of alcohol for 3 months. Doing lots of exercise, too. But perhaps this chemo tablet is the final piece in the jigsaw, so to speak. I think I'll literally suck it and see! At least if it does come back in a few years time - or whatever - I can say that I used every means offered to keep it away (well, that's what the Colorectal Cancer nurse said to me yesterday, anyway). 

Hope everything goes well for you and best of luck raising that family you want!