Who decides the chemo treatment plan for cancer patients?

Hi deebee60,

Thank you for getting in touch with us.  My name is Adrienne and I’m one of the Cancer Information Nurse Specialists at Macmillan.

I see that you have joined a few of our forums.  I hope you are finding them helpful and supportive. 

I’m sorry to hear that your oncologist was so dismissive of your concerns and the information given to you and then your GP was contradictory. 

As you mentioned, your oncologist uses the Oncotype DX test to assess whether or not chemotherapy would be beneficial after surgery to help prevent recurrence of the breast cancer.  They then work out your treatment plan by following the guidelines from the National Institute for Health and Care Excellence (NICE), which are evidence-based recommendations for all health and social care professionals.  They have to take into consideration any underlying health conditions you may have and from this, decide on the best treatment plan for you.  This plan should then be discussed with you so you are able to ask any questions and make an informed decision on your care. 

Your oncologist would have chosen paclitaxel over docetaxel first due to the recommendations from NICE.  These state that ‘the benefits and risks of treatment should be discussed because of the potential side effects associated with taxanes. Three-weekly docetaxel was identified as a regimen with potentially more toxicity than weekly or fortnightly paclitaxel’.  You can read about this on page 85 here.

Everyone’s treatment plan is individual to them and it depends on many things.  The stage and grade of the cancer, biomarkers of the tumour (oestrogen, progesterone and HER2 status), overall general health, underlying health conditions they may have (such as heart, liver or kidney disease) and any medications they may be on.  This information together with the NICE guidelines determines the treatment plan offered. 

That being said, it’s important that you understand why your particular treatment plan was offered to you and whether there were any other options.  It might be helpful to get back in touch with your oncologist to ask for another meeting.  Ask about the letter that was sent to the GP stating you had previously discussed docetaxel when you hadn’t and ask to explore this further.  Write down any questions you want to ask so you are prepared going in and don’t leave anything out.    

I hope this was helpful deebee60 but please know that you can always give us a call or chat to us if we can be of any further help.  Or even just to talk things through.  We’re here every day from 8am to 6pm. 

Wishing you all the best with your treatment going forward.

Adrienne

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

Ref:  AMc/GHi

Hello Adrienne

Thank you for your quick reply. I have looked through the document that you linked above and have a couple more questions.

The quote that you mentioned on page 62 clearly shows that 
"Three-weekly docetaxel was identified as a regimen with potentially more toxicity than weekly or fortnightly paclitaxel."
So weekly paclitaxel with less toxicity should be a god thing?

Also, on page 25 in the RH column it says that "Weekly paclitaxel is tolerated best, but even fortnightly is better tolerated than 3-weekly docetaxel"

My question is - Why is weekly paclitaxel tolerated better than 2 weekly  paclitaxel?
Is it to do with the dose size?
If weekly and 2 weekly are equally as effective why do they give 2 weekly ?

I am really anxious about getting long lasting neuropathy from  paclitaxel. (I have seen both of my parents suffer from diabetes induced neuropathy in their feet and it was so debilitating for them)

I understand that paclitaxel can have a bad effect on the nails too.

What steps can I take to reduce the risk of side effects?

I am very anxious about my whole treatment although I have tolerated EC quite well with minimal side effects... I guess it's fear of the unknown...

Thanks

dx

Hi deebee60

Thanks for getting back in touch. My name is Ursula, and I’m one of the cancer information nurses, here on the Macmillan Support Line. 

It’s understandable to have questions when making decisions about treatment. It is important that you understand why a certain treatment is being offered and how. I am pleased to read that you have tolerated EC chemotherapy quite well with minimal side effects.

We know that worrying about cancer and its treatments is extremely difficult, especially when you are in a period of dealing with uncertainty, and the fear of the unknown as you have said.  Not knowing what is going to happen might make you feel irritable, angry and frightened. There is no right or wrong way to feel, but it is important to know that there is support available.

Although not specific to Paclitaxel, treatment cycles have been developed through clinical trials. This helps doctors determine which treatments have the most benefit with the least side effects. You can read more about this here. On the Macmillan support line, we are independent of the NHS, and do not have access to medical records or information. We are unable to offer personalised advice. We would suggest you discuss this treatment plan with your specialist team (Consultant, or clinical nurse specialist, if you have one). As they oversee your care and treatment, they will be best placed to offer you more individualised answers around this and support you with your concerns.

With regards to managing side effects as you know everyone is different. For some people the effects are mild, and for others more severe, but again there is support available. When you start chemotherapy, you should be given a number for a 24 hour advice line to contact if you are experiencing side effects and your breast care team are also there to support you through this.

Chemotherapy can sometimes cause nerve changes. Research is being done to look at different ways to reduce blood flow to the hands and feet, before, during and after chemotherapy. This includes cooling techniques for example icepacks, cooling gloves/socks. They are not widely available and may not be an option at your hospital but do ask your team about this.

There are things which can help with nail changes from cancer treatments.. Look Good Feel Better offer advice on nail care and also hold regular virtual hand and nail care workshops which may be of interest to you.

I wonder if you might also benefit from giving our support line a call. As well as the information and links in this reply, we often find we can speak in a bit more detail over the phone, giving you the opportunity to ask more questions if needed.

I do hope you find this information helpful, but please do not hesitate to get back in touch with us if you need any further support. 

Best wishes, 

Ursula, Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.  

Ref: UH/AMc