Experience of Charing Cross Hospital NHS for breast cancer treatment?

Sorry no one has replied to you 

I used to work in the radiotherapy department there but it was 25 years ago so I have no recent experience of the place. I have worked a lot with Dr Susie Cleator who is one of the main oncologists in radiotherapy for breast cancer and she is very good.

When I was diagnosed I was given the choice of RMH or Royal Surrey so there shouldn’t be an issue if you wanted to change.You would need to contact the people who saw you at ST Mary’s .

St Mary’s is part of Imperial health trust so it’s natural for them to refer you to CXH

Hope all goes well fo you wherever you end up.

hello there

Thank you so much for reaching out. It really helps. I saw that Dr. Susie Cleator is at Charing Cross. I note you say she is very good. I guess I am comparing both surgeons and oncologist to those at the RMH.

I have not met her (yet) and wondered in your view she is someone who has a good reputation and also is up to date with latest radiotherapy treatments.

Also wondering whether Charing Cross would have the latest radiotherapy techniques bearing in my tumour is upper inner quadrant close to the heart area.

I am wondering whether you had radiotherapy or have any tips are latest techniques? I am not sure what questions I should be asking around radiotherapy once I receive my care plan. Any advice?

I got told today that it is ER and PR positive and HER2 negative so that means no chemo. 

thank you again.

Hi

I chose to go to RMH Sutton and I had Katherine Krupa for surgery and Imogen Locke for RT. Miss Krupa did a great job on the surgery and I have a good cosmetic effect with minimal scars. I had 5 treatments of radiotherapy.I only saw Miss Krupa on the day of surgery as pre op and post op were dealt with by registrars.I saw Dr Locke once. RMH has an open access follow up policy so it it up to me to contact them if I need them with a yearly mammogram.

Re Susie Cleator she is a very experienced oncologist who is very approachable and knowledgeable.

As your tumour is in your left breast you may be getting DIBH radiotherapy which means deep inspiration breath hold. You have a planning CT whilst holding your breath . This moves your breast away from your heart in order to minimise the dose to your heart . When you have your RT you will have to hold your breath in the same way. Sometimes when you have your planning scan they can see from your anatomy that your heart is already far enough from the treatment field so you won’t have to hold your breath.

New treatment regimes were brought in in 2020 allowing some  patients with early breast cancer to be treated with 5 treatments instead of the standard 15. This was as a result of a trial called Fast Forward… you get a bigger dose every day but a lower overall dose but it is  biologically as effective as the 15 treatments. The decision who gets 5 or 15 lies with the oncologist and is based on your age, size of tumour, histology and nodal involvement.

I also only had part of my breast treated instead of the whole breast as my tumour was very small 4mm and I had clear margins at surgery so my skin didn’t get sore.

I guess my questions would be

How many treatments?

Full breast treatment or partial breast?

Dibh?

Also ask about the lead time for radiotherapy after surgery….. ideally you should start within 12 weeks. Some departments are struggling to fit everyone in. I waited 10 weeks and most of my appointments were after 7 pm

Hope all these ramblings help 

Happy to help if you have any other questions… I was a radiotherapy radiographer for over 35 years 

• x

hello there

My apologies for the delay in replying. Thank you for message - that is so helpful. 

I am pleased for you that your treatment process sounds like a huge success.

I am not sure if Susie Cleator will be my oncologist and at the moment I am on Paul Thiruchalvam's list - he is the breast surgeon. the other name at Charing Cross is Simon Wood as the reconstruction consultant.

How wonderful that you are a very experienced in the field of radiotherapy - this must have helped your process.

I have a contrast MRI today and am feeling petrified - even over whether they get all the info for eg I am told that my arms need to be by my side and yet images from Cancer UK show they are outstretched. my brain is in over-drive but reminding myself I only got the news one week ago. so need to take it more slowly and gently with myself.

A long road ahead and I'm trying to tell myself to brace myself for any eventuality. 

thank you again for replying x 

Hi

• I hope your MRI goes well today.

Try some relaxation techniques while they are doing your scan. I always take myself off to a lovely beach in my head.It helps me.

Take care x

Hello there

I hope you are well. I had my contrast MRI last week and managed to get through it. Still waiting on results. I have my contrast Mammogram tomorrow (Wednesday).

I am shoring up for a second opinion - ideally at the RMH in Chelsea.

I looked up your consultants and it seems that Katharine Krupa is based at Sutton only. Imogen Locke is based at RMH Chelsea. I note you say you only met Dr Locke once - how did you experience her? 

The other name I was given for an oncologist is Marina Parton at RMH Chelsea. A friend had a great experience with Dr. Parton - my friend's case was triple negative and BRCA - so it was very complex as well as really sad. However she has pulled through.

I am currently waiting for a treatment plan at Charing Cross - my next Appointment in clinic is on 9th June.  I am hoping for a breast conserving surgical procedure but just have to wait and see what options I am presenting with.

I am not sure whether I should be seeking a second opinion from a Breast Surgeon or an Oncologist in the first instance. I guess it depends on the treatment plan. Any experience of this yourself?

Best 

B x 

Hi

I am glad to hear you got through your MRI ok. Good luck with the mammogram.

Your current team seem on the ball. Is there a particular reason you want a second opinion?

I suppose your first port of call would be asking to be referred to a different surgeon who would then refer you on to an oncologist.

Marina Parton is a medical oncologist so would only deal with the chemo side of treatment which you don’t need.

Imogen Locke was lovely but to be honest she knew I was in the profession so our time was spent talking about people we knew. One thing she did do for me was to refer me for a course of acupuncture at RMH to help with the symptoms I was getting from the Letrazole tablets and this has helped me enormously. It is something that RMH offer and on the 6th session they teach you to self needle which I do weekly and it really helps.

I believe CXH has a Maggies centre for information and support which offers classes and group sessions.

I don’t really know what to suggest to you.I only chose RMH over Royal Surrey as RMH was closer to my home and I couldn’t face the m25 every day! There is a lot to be said for the ease of access as you have so many appointments.

Good luck with whatever you decide and keep in touch.

All the best x

Thank you so much for the reply and for the information you have provided so far - it has been really helpful.

Noted on Marina Parton and Imogen Locke and yes I agree it would seem sensible to go to a breast surgeon first should I embark on a second opinion. 

I was interested in Marina's work around Neo-adjuvant treatment and also as I said a friend spoke highly of her. 

It all depends on the treatment plan - like I said I am looking for breast conserving surgery but I am aware that it may be a more invasive surgery. 

Glad you found acupuncture useful with the side effects. I will cross that bridge later on as I mayl need to take similar meds. I believe in a holistic approach to compliment the conventional medicine - I am a reiki practitioner so this helps ease the discomfort.

thank you for your well wishes. I will take it one day at a time. 

Wishing you all the best too x 

Hello there

How are you? You kindly gave me some sound advice when I started my journey with cancer.

I hope you don't mind me approaching you again. 

I have now had breast conserving surgery - wide local excision, sentinel lymph biopsy - all a success so far. I ended up gong private for the surgery as the date was much sooner and I wanted to get the ball rolling on the whole cancer treatment journey. The histology showed a larger tumour at 16mm and a grade1 and not grade2 as earlier shown. There was scanty DCIS. Surgery took place on 2nd July. If I waited on the NHS it would have been 1 August.

I had my first meeting with my oncologist who is Susie Cleator at CXH - now back in the NHS. The tumour was close to the skin at one part so the radiotherapy prescribed is: 5 x sessions to the whole breast with breath hold.

Waiting on the planning appointment and I have already been that they are inundated and have to take patients from other hospitals.

Dr. Cleator wants me to try Letrozole and I am aware of the side effects including bone thinning in particular as my mother has osteoporosis. Ironically that was a reason that I went on hrt to avoid osteoporosis and now I end up on meds that may give me this side effect.

I am due to have a bone density scan - soon I hope - as a baseline. I am aware of the other side effects of letrozole including hair loss and pains in joints and muscles. As well as the menopausal hot flushes and sweats etc.

I note you learnt acupuncture to help ease your symptoms. Please can you advise what your side effects were? For example I have read that there could vaginal bleeding.

How has the acupuncture has helped? Do you have any other suggestions to help the side effects?

Right now I am battling with menopause symptoms such as hot flushes and night sweats, brain fog and fatigue. I am taking black cohost and sage drops, magnesium, starflower and  use cooling pads at night time.

Dr. Cleator did say that we would monitor how I go with Letrozole and I do understand her reasons for going on this initially - I want to ensure the best approach to reduce the oestrogen in my body so the cancer does not occur in the other breast. I forgot to tell her that my last period was March 2022 - but that could be the hrt and not a natural period.

I look forward to hearing from you. Thank you for your time.

with warm wishes

B x  

Hi 

it’s great to hear from you and it’s good to know that you have had your surgery and that you have changed to grade 1 …. That’s great news.

So I’ve been on Letrazole for a year now. I was always at risk of osteoporosis as I had a very early menopause due to a thyroid condition so have taken calcium tablets since then and my dexa scan showed I did have osteopaenia so now I also take a vitamin d supplement ever day.I also walk a lot as I have dogs and that is supposed to help

The hot flushes were awful at first which is why I was referred for the acupuncture course. So it was  6 weekly sessions then as I said I was taught to self needle my feet and legs and was sent away with instructions to do this weekly for 15 minutes at a time. I had a further 4 sessions over the next 6 months and then discharged from the clinic with instructions how to buy more needles. I I can be re referred at any time if I’m suffering.

Anyway I found the intensity and frequency of the flushes decreased dramatically. At most I get 4 mild ones a week and no night sweats at all whereas I was having to get up to change my bedclothes before.

I bought some cooling towels from Amazon that  you wet and they stay cool and I’ve been putting those round my neck in the super hot weather. I also borrowed the dog’s gel cooling mat as he never used it for the very hot nights.

I do get a bit of joint pain but I take a couple of painkillers in the morning and then go for a walk for 1.5 hours and the joint pains go then. 
I do have a bit of brain fog….. almost like being jet lagged but I’ve got used to it now.

The insomnia is the worst thing and I am a fully paid up member of  the 3am wide awake club.

My oncologist said the first 6 months are the worst and she was right. She also said I could swap onto another drug but I’ve come this far so I might as well stick.

There is evidence that different brands have different side effects but I’ve only ever had sun pharma so I can’t say I know too much about that.

I haven’t had any bleeding.

I do t know if I am allowed to say it on this site but there is a Facebook group called menopause without HRT which has some useful tips on it.

I got my first year mammogram results in June and I’m all clear and already have my appointment for next year.

onwards and upwards 

I hope all goes well with you RT

A x