We are grateful to have Clare, senior breast cancer nurse with us this evening to help answer our questions and concerns and also to update us.

Important – The notes below are what was discussed. Links of interest were provided later. The group cannot be held responsible for any inaccuracies. Please do your own research and discuss anything you’re unsure with a medical professional.

Q & A

Q (LB) – I’ve just read Jane McLelland’s ‘How to starve cancer’. Chemotherapy and radiotherapy target the cancer cell’s gene and the cell cycle. As cancer cells have abnormal cell metabolism and cell signalling is there anything being done at Winchester to look into repurposing drugs (e.g. repurposing metformin, statins, doxycycline and mebendazole for cancer)?
A (C) – Nothing being done at Winchester to look into repurposing drugs but there are currently trials conducted. Oncologists are not licensed to prescribe repurposed drugs. Sandie asked about CBD and Clare cautioned that the quality/source of CBD oil is important but is unsure about its efficacy. Drug contraindications are critical. Clare gave an example that St John’s wort may prolong anaesthetic.

Links of interest

Brief summary of the rationale and some of the current scientific evidence which supports the use of the Care Oncology (COC) Protocol medications in glioma

Study of the Safety, Tolerability and Efficacy of Metabolic Combination Treatments on Cancer (METRICS)

A New Method for Ethical and Efficient Evidence Generation for Off-Label Medication Use in Oncology (A Case Study in Glioblastoma)

Q (SE) –  What about the effects of oral sea buckthorn (SB) oil supplementation on vaginal atrophy (VA)?

A (C) – Don’t know. There are many unknowns with VA. Topical hormone cream may be alright for a short period of time.

Link of interest

Effects of sea buckthorn oil intake on vaginal atrophy in postmenopausal women: a randomized, double-blind, placebo-controlled study

Q (LB) – Are oncologists at Winchester open to patients using repurposed drugs?

A (C and group comments) – Yes. Experience so far has indicated that all oncologists in breast care are open minded to this.

Q (SE) – For ER+ tumours, is there any blood test to check oestrogen function? For example, would low oestrogen indicate low chance of recurrence?

A (C) – This test is done on the tumour (eg. ER 8 PR 8 (can be 0-8)) and HER-2 (negative,0/1/2/3). Alyson said that this information in available in the letter that the breast unit sends to her GP. This would also be available in the pathology report.

Q (SE) – How do we know that secondary cancer is from breast cancer?

A (C) – Not sure.

Sandie concluded that it may be better to ask the oncologist about this

Q (PS) – I would like to talk to or meet someone who has had internal beam radiotherapy during surgery (Target radiotherapy trial)

A (C) – Clare told us a bit about the trial explaining that patients for this trial have to meet certain criteria (tumour under 3cm, under Grade 2, older). The area where the tumour was taken out is then targeted by radiotherapy. This procedure extend the time under anaesthetic by 20mins). Patients may need a booster but most require no further radiotherapy. This has been offered in Winchester for only about 10 years so is still relatively new. She can put Pat in touch with someone.

Pat gave her details to Clare.

Q (EH) – Has anyone developed breast cysts after diagnosis? Elaine explained her concerns.

A (C) – Cysts are more common as we get older. Please give Claire details so Elaine can have a mammogram a bit earlier than scheduled.

Q (JE) – What are Clare’s thoughts and advice on the recent news about the increased risk of breast cancer from menopausal hormone therapy/ HRT?

A (C) – Don’t panic. Be aware. Be breast aware. GP screening where GP will ask relevant questions like family history, etc. GP will monitor patient on HRT. Ultimately it is a balance between risk and quality of life.

Links of interest

Type and timing of menopausal hormone therapy and breast cancer risk: individual participant meta-analysis of the worldwide epidemiological evidence

Government information in response to the study

Q (CB) – Is pain on arm lymphodema? It is not hot or swollen.

A (C) – Best to have it checked out. Call breast care unit

Q (LB) – I would like a copy of my pathology report for my tumour

A (C) – Email request to Clare

Q (LB) – Would anyone requiring replacement breast forms just need to contact the breast care nurse?

A (C) – If under 5 years post treatment, yes. Breast forms can normally be replaced if less than 2 years if damaged or unsuitable.

If over 5 years, they need to get a referral from their GP.

Updates

1. Dr Rainsbury will be retiring. Ms Laws and Ms Chand will be taking over.
2. Jo Fields, advanced nurse practitioner has joined the unit and will be offering a one stop shop. She is also able to do examinations.
3. Dr Raj sees breast cancer patients in Southampton and Winchester
4. Cassandra Callaway, Breast Cancer Support Worker started in April this year and is giving psychological support to patients who are recovering from having had breast surgery. Also helps with Moving Forward courses and Open Access (not yet available)

Comments/ Feedback

1. Most ladies see oncologist annually after completing treatment but not Alyson who sees the surgeon.
2. PP – Dexascan results seem to take a long time i.e. more than 10 weeks
3. LB – Blood test done at hospital cannot be accessed by Fryern Surgery. Clare will look into this.
4. Recommend to invite Dr Rao, Ms Chand and Cassandra to group for talks
5. Christmas Party on 3 Dec – Linda proposed buffet style at Christ Church. Sandie will check that we have the room we need.

Vaginal Atrophy (VA)

Attendance: 12

Collection: £13.00 (inc £1 from plant sale)