“Stopped Adjuvant Chemo Before Completion — How Did You Cope Afterwards?

[Tonti71]

My Story: Considering Stopping Adjuvant Chemotherapy — Seeking Others’ Experiences

I was diagnosed with stage 3 bowel cancer and had a resection. Thirteen lymph nodes were removed during surgery, and when they were biopsied, only one showed cancer — and I was told it was a low-risk form.

Before surgery, I had chemoradiation, and I recovered from the operation quickly — out of hospital within 5 days. About 6 weeks later, while I was expecting to have my ileostoma reversed, I was told my options were starting adjuvant chemotherapy or not. This came as a shock, as I had been told I was cancer free, so I wasnt thinking any further beyond. I havent understood anything about cancer.

My surgeon said the decision was up to me, but my oncologist strongly recommended adjuvant chemotherapy, even though they read the stats, and I did my own research online that there is  no clear statistical proof it will help with having had bowel cancer— it’s more of  maybe  preventative measure.

I’ve just started treatment (oxaliplatin and capecitabine) and I feel absolutely awful — like death walking. The nausea is horrific, and the peripheral neuropathy has already started. I honestly don’t feel I have been given enough information about the whole process. I’ve just been going along with what I was told, without fully understanding it.

Right now, I don’t see the benefit of continuing. I feel I would rather attend regular check-ups with my surgeon than put my body through this.

Has anyone else chosen to stop adjuvant chemotherapy early?

• How did you make your decision?

• Did your oncologist support your choice?

• How did you cope emotionally afterwards — did you feel fear, guilt, or relief?

• Have you stayed well since stopping?

• Looking back, do you feel it was the right choice for you?

Any insights, advice, or personal experiences would mean so much to me right now. Thank you. 💛

[joseph_CCNSW]

Hello Tonti71.   Thank you for posting here. The online forum can be a wonderful space to find support from others who connect with your experience and share their own stories. You may also find it helpful to search Cancer Council's  website or to call our 13 11 20 team for information about the range of services available to support you.   Kind regards ... Joseph_CCNSW

[sch]

Hi @Tonti71 

Been there, done that, and I have the scars to prove it.

My cancer was bowel cancer stage 2a, with the tumour pressing up against the lymph node.

I was 40 yo when diagnosed (lynch syndrome) and due to young age and other personal circumstances, I chose to have a total colectomy and chemotherapy (12 rounds of FOLFOX) just to try and ensure that any stray cancer cells were cleaned up.

The platinum based chemotherapy drugs (oxaliplatin, cisplatin & carboplatin - there are others, but these are the most common that I've heard of).

The platinum based drugs have a healthy list of nasty side effects.  You can help manage these risks by telling you treatment team about any side effects and the doctor can decide to modify or stop your treatment.

I had my cancer in 2017 and I'm still here and cancer free.  There is no definitive way of knowing whether the chemotherapy made any difference, but I wanted to give myself every chance possible. Understand the risks and good communication with your treatment team were key for me.

--sch

[Tonti71]

I really appreciate your feedback and experience Sch.  Bravo on remaining cancer free.  Im chatting to the team tommorrow. Hopefully I can come up with a better informed decision. Thankyou very much.  Best, T. 

[sch]

How did you go @Tonti71 ?

[Tonti71]

Well Done with your treatment. I decided to stop the Adjuvant chemotherapy as the side effects were too severe for after one round of it. I will continue with regular checkups. 

All the best to you and others reading. 

[Milo01]

Hello Tonti71,

I think it is important to remember that we have reviews with our medical teams to reaccess our treatment plans, to determine if they are still current or working for you. And that includes your current health versus future complications caused by adjuvant chemotherapy and then the other options available to you at the time. And realistically treatment plans do change all the time. It is based on an individual’s needs,

It is a discussion between the two of you. You and your Oncologist.

Your say is equally as important.

As long as the decision you have come to is one you have confidence in yourself,that is what matters.

All the best to you too.

Milo01