Flummoxed and in a Pickle 🙃🙂

[Freckle1000]

Hello from Australia 👋

I hope you're all coping and doing as well as you can.

Sorry to barge in from the other side of the world but I have an English based query.

I have triple negative Inflammatory beast cancer and nearing completion of about a year and a half of chemo with a mastectomy and axillary clearance and good margins. Thankfully I've responded well to treatment but unfortunately chemo just didn't quite eliminate the thing.

Protocols indicate that I should have radiotherapy very soon but I also suffer from Systemic Lupus Erythematosus which in the past has been seen as massive contraindication as it might trigger a nasty re - activation of the lupus which for me tends to damage vital internal organs.

I've found a radiation oncologist here who's very respected, senior, experienced and to be honsest - is the only one I've found who believes radiation is worth the risk for me.

He's based his opinion on what looks like brand new Lupus / radiotherapy observational data from a Dr Gillian Ross from the Royal Marsden Hospital who he spoke to.

My question is a bit weird - but has anybody come across this lady in their travels and have any opinion or feedback about her ? - and / or the Marsdon Hopital ?

Please feel free to private message me if you'd prefer - and know anything you say is utterly confidential and won't be shared or quoted anywhere.

Thanks.

[Happyrosie]

the Royal Marsden is said to be the premier cancer centre of England. Or the UK. Or Europe?? Doctors go there for their onco training (and presumably surgical cancer training though I’m not so sure about that).

I know nothing of the doctor you named, though,

I’m sure you would be as reliant as anyone could be on that’s doctors thoughts, and I really feel for you.

Please do post back here (or pm me) when you’ve made your decision. And then again when you’ve recovered.

[Freckle1000 in reply to Happyrosie]

Thankyou Happyrosie.

[Freckle1000 in reply to Freckle1000]

ps. thanks also for putting the Royal Marsdon into a local English context. It's really helpful. It is a somewhat freaky situation to have one Dr's opinion and the prestige of a hospital being very singled out as a guide. The fact that my radio - oncologist went to the effort of seeking an opinion from there - according to my local Drs 🙃🤔 seems to be an indicator that I should trust him too ?

Thankyou again.

[Freckle1000 in reply to Happyrosie]

Hi Happy Rosie - just a hello, 🙂 to thank you for your advice and to say I've completed the three weeks of radiotherapy - and although it did activate my lupus - I was able to manage it with extra prednisolone. I'm a few weeks post treatment and alive and starting to feel well - and very glad I took the risk despite some pretty dire predictions from so many oncologists.

Looks like your radiotherapy oncologists there know what they're on about.

I hope you're well ?

K.

[Happyrosie in reply to Freckle1000]

I’m so pleased you’ve replied, and with good news - thanks.

I don’t have your medical history but I was diagnosed with a similar breast cancer and, after radical mastectomy, radiotherapy and chemotherapy, I’m now ten years down the line and feeling very well.

[Freckle1000 in reply to Happyrosie]

🙂😊It's really re - assuring to hear from you as someone who's been through a similar journey and is still going strong ten years later.

Technically I'm still at stage 3 with this thing - I couldn't quite eliminate it from the axillary nodes - despite a very lucky and positive response from treatments. Chemo, double mastectomy, and now the zaps.

At this point I'm doing my best to convince myself that I have a good future ahead of me which, after a year and 3/4's treatment is really the only sane place I can put my mind right now.

Your message has really helped.

x

[weathervane]

Maybe try posting on Lupus Uk site , you might find someone with similar issues or they might recognise Dr Gillian Ross from the Royal Marsden Hospital .

Best wishes xx

[Freckle1000 in reply to weathervane]

A big hello weathervane ! 😁👋How have you been ?

As you can see I've been a bit of a mess but I'm doing a lot better now.

That is a VERY good idea !

Once I get a bit more oomph I'll do just that.

When I was first diagnosed with the cancer I was told radiotherapy wouldn't be an option - so I had a browse of old Lupus UK posts and contacted ( cant remember her name ) a medical info person there - who sent me lupus / radiation literature. It looks like one (or two) people went ahead with radiotherapy despite being told they couldn't - and it went well.

Fun fact - I learnt today that plaquenel and radiotherapy doesn't mix. ( Rheumy )

And from my renal specialist - localised radiotherapy should be ok but whole body - not so great.

As for the oncologists - their opinions are very polarised, emotive and adamant.

I had no idea how much the treatment decision making is up to the patient in oncology. Its very different.

xox

[weathervane in reply to Freckle1000]

I have Sjögren’s and get rituximab infusions. I had a lumpectomy and radiotherapy without any major issues, oncology and rheumatology did liaise . Only issue was the delay in next rituximab. The radiotherapy is quite targeted and other parts of body can be protected.

It’s enough for you having lupus without having to worry and research about this . I hope you get get it sorted and receive the treatment you need. Take it easy and look after yourself, best wishes xxx

[Freckle1000 in reply to weathervane]

Thankyou weathervane 🙂

Sounds like you've been through the ringer yourself.

I will nudge some better interdisciplinary liason here.

Best wishes to you too. 👋

[Freckle1000 in reply to weathervane]

Hi Weathervane - 🙂👋Just a big hello - to say thankyou for your advice to my radiotherapy conundrum.

I'm about two weeks post - three weeks of radiotherapy and despite some fairly colourful predictions about what would happen - I remain alive and essentially unharmed by the whole process.

I was the obsessive pedant I always am - and somewhat 😶‍🌫️🙃 clear headed enough to differentiate between what was radiotherapy and what was lupus - not easy - but I've had lots of practice with the lupus at least.

I did have the early signs of a flare by the second week and my Rheumy dampened it with 15mg pred tapering down over a month. Thankfully she answered while on holiday 😲

Still a bit flarey but no serious burns or instant death from a monster immune response as predicted.

I'm doing really well and getting some energy back fir the first time since March 23'

🙂

How are you ?

X

[weathervane in reply to Freckle1000]

Good to hear you got through radiotherapy and that your rheumy was there for you as well 😀 Im not too bad , the rituximab has been delayed so have more pain at the minute, have to wait until middle of August.

Keep moisturising and massaging the scar , im still doing it as get fluid buildup. Do you have to take anastrozole or a similar drug? I did have increased muscle pain a year and a half into taking it unsure whether it was the drug or the Sjögren’s , doctors didn’t know either 🤷‍♀️.

Take care , it’s good to hear you are getting your energy back x

[Freckle1000 in reply to weathervane]

Thanks for all that support and advice weathervane. I hope you can get your hands on that ritiximap when you need it.

🙂 You take care too.

x

[wackier]

hi lm in the UK and found her straight away with a google search still at the Royal Marsden you may have to try to get to her through the hospital but does both private and NHS good luck and keep in touch if you want me to do more research for you at this end

Eileen

[Freckle1000 in reply to wackier]

Hi wackier. Thanks so much for doing some googling in my behalf.

That's really good of you ! 🙂

I must admit - it never dawned on me to actually speak to this Dr myself.

I'll do some googling myself to see if this is possible.

Kerryn.

[wackier]

wishing you every success on your journey and my motto is to stay positive.

Eileen

[Freckle1000 in reply to wackier]

I'll do my best 🙂