Needing oncology advice after being discharged from service

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Hi

I was discharged by oncology and breast surgical team at 5 year NED, in Nov 2020. I need advice about a medication recommended by a specialist for another issue. Any advice on how I get that? Do I need a referral from my GP as that seems terribly wasteful of NHS resources! Also, my GP has a 20 day wait for appointments.

Appreciate any help you can offer. Its a supplement called Equol and I have Er8 PR8 HER2 neg breast cancer & a high risk family history (uninformative negative gene tests but Mother Grandma sister and me all young age diagnoses)

Thank you!

Cate

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Hello Cate,

This is always a worry when you come to the end of your five years, I was wondering if it would be a good idea for you to call your Breast Cancer team at the hospital you was under when you was having treatment they should be able to help you as they will still have your records.
Wishing you health and happiness going forward
Hugs Tili :pray::rainbow::pray::rainbow:

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Thanks so much for your reply 🩷 I will do that, the worst they can do is turn me away :wink:

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Hello @coffeetogo
There is no harm in asking, but I would very much anticipate that prior to prescribing any drug the doctor will refer to the advice that is issued by the manufacturer about who the drug is and isn’t suitable for which would stipulate if you can take it safely
AM xxx

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Thanks for your reply. The specialist I am seeing is an endocrinologist, I was referred to him following my diagnosis with a number of autoimmune diseases, unrelated to my cancer. As he has limited interaction with cancer patients, he asked me to seek the opinion of an oncologist. Equol is not classed as a drug, not subject to the scrutiny of prescribed medication. It’s Soy Metabolite and has, at various times and in numerous studies, been considered to have both anticancer AND oncogenic properties. My specialist is inclined to defer to the oncologist, since the oncologist will have the most rounded & up to date knowledge of Equol’s effect in cancer-specific patients.

In all honesty, my inclination is to pass on Equol. When I was diagnosed, the oncology team advised me to avoid soy products - but over the past 8 years, medical opinions have been divided. Ultimately, it has to be my choice and considering there is no consensus on its safety, not taking it seems wise. But I’m certainly interested in if my old oncologist’s opinion gas changed 8 years on.

Thanks again
Cate

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Hi Cate

Thank you for posting.

Equol is a soy supplement and as you say information about soy and breast cancer can be confusing and conflicting. There is no evidence that foods containing soy or isoflavones affect cancer risk. However, the safety of supplements containing soy is yet to be established and they are generally not recommended but as it has been recommended by your endocrinologist, it is understandable that you would like to talk this through with an oncologist before making a final decision.

Access to oncology appointments following discharge vary according to local protocols. You can ask your endocrinologist if they can write to your oncologist for an opinion on taking Equol and they may also be able to request an appointment for you in this way.

If this is not possible it may help to call your breast care nurse as @Tili suggests. They will be able to tell you the best way to arrange an appointment. Your breast care nurse may be able to request an appointment on your behalf but as you were discharged in 2020, you may require a new referral from your GP. If this is the case it might also help to telephone your GP practice for advice, as they may be able to offer you a telephone or email consultation instead of a face-to-face appointment which might be quicker than 20 days.

We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.

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Best wishes

Katy

Breast Care Nurse

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