i am tn and local skin recurrence while on chemo so at present having radiotherapy and am gutted as i know treatment limited for tns anyway, so i wrote to a prof in breastcancer dept at royal marsden and he said it is a difficult one to treat but to get my records to him and he will see what to advice…my question is if my notes go to him am i giving up all care and treatment from rsh and prh in telford,really want any help i can get, but marsden is 3 hours away …has anyone else gone there and travelled the distance just confused how it works as am scared x
Hi fairy queen
sorry to hear about the local skin recurrence. Hopefully the rads will zap them away!
I’m at the marsden in Sutton as only 20min away, so very lucky. My professor onc is amazing, they have a really good team and they discuss each case in a multidisiplinary (spell?) meeting.
Maybe a second opinion would help put your mind at rest. I don’t know how it works with Drs sorry but maybe the royal marsden could advise what treatment to have but then have actual treatments at your local hospitals.
All the best & big hugs!
Hi I’m going to royal Marsden next wk for 2nd opp I’m also tn it’s v hard to know what to do I live a hr away so not to bad than can treat u there with some bits and go to local hos for minor stuff pm if u want tc laura
I am also at the RMH at Sutton (hi to Cookie_Monster - you do wonder sometimes if paths cross :)). I think we are probably all talking about the Prof and the team - they really are good. I wonder if the prof would do a phone consultation - it is worth asking. I don’t think you are passing your care etc to him - he will just advise if that is what you want.
Laura are you at the Fulham Road branch, or Sutton?
Dawnhc hi I’m going to the Sutton one didn’t no wat one to choose just a bit nearer to me just hoping he can help laura
Hi i am currently managing my treatment between two hosps not the easiest thing but, needs must, iwas dx in1997and treated by a well known and reputable prof in edinburgh, u shud google him,? i pm name if u want, i have been under his care since then i now live in north wales and have travelled every yr to scotland for check up,s i wz dx in jan again and have had wle here, snb there, chemo started here, and will go up there for him to do mx and imm recon, i have autistic little boy so it’s not easy, but am happy that my pfof and his team involved, it helps that his reputation is respected by the team here. you have to do what you are happy with and because both health authorities are in england all notes ect should be available on computor, trouble i had was wales wasn’t able to get comp. info from scotland. i hope this helps you see it is possible to get the’best of both’ if there is abest of anything with bc! xxlove j Soz edited to say on re reading my story vauge most of it is on “it stinks” thred,
I managed to get a referral there for peace of mind and it was facilitated by a genetics team at Oxford. I was being treated locally at the time (not Oxford) and since then have had care elsewhere because my local hospital and surgeon were just not up to the mark at all. It does make thimgs slightly less simple but I would not hesitate to do it again despite the long travel time. You need to feel confortable with the people who are treating you and if that means a long trek then I’d just do it. I had a 9 hour round trip just for some lipo filling because I was confident of the surgeon and not of the one locally. You need to do what you need to do and even NICE guidelines now state that you should be able to go to a hospital out of area for recon if that’s what is best for you.
Good luck whatever you decide.
I have had a written report from the Royal Marsden as it really is to far for me to travel. You are entitled to that.
This is a very interesting thread (thank you fairyqueen) and i wonder if you could give me some advice? I am thinking of asking for a referral to the Marsden for a second opinion as I am concerned about the standard of care where I am.
Sorry to bore you all with the details - I was dx at 39 with IDC, DCIS and Paget’s disease right breast. very oes +ve, neg nodes. Was treated with mx, radiotherapy and tamoxifen - changed to Arimidex after 15 months due to PE. Was last seen by onc 2006.
I am now due to finish Arimidex and have read several posts from some ladies who are staying on it for more than the 5 year period. Therefore I contacted the onc secretary to get an appt and was told that I don’t need to be seen by the onc as I was discharged from them in 2006 back to the surgical team, so should see them instead.No appt given, despite me also asking for a 5 year review!
I went to the breast clinic - no consultant available and I didn’t feel that I could asked the registrar (who was there on her own) as, after examining me, asked when my next mammogram was due (i have had bilateral mx !
Spoke to the BCn as thought I may be able to access the onc that way - she said breezily that I should just be able to stop it, didn’t need to see onc and she would email the onc for confirmation of this!
i don’t know if this is normal proceedure nowadays (I would really like to think that it isn’t)- all I want to do is to sit down, face to face with an oncologist and have a review and discuss the next stage of my management now that 5 years of therapy with AI are up - I really don’t think that is too unreasonable really. hence my thinking that i will go elsewhere - the Mardsen.
Do you think this will be possible? Do they do this? I would be very grateful for any comments.
You are entitled to a second opinion and entitled to change your onc ive had 4 before i found one i could work with. All you need do is ask your onc to right to the royal marsden with all your information asking for a written second opinion or ask the onc for a referral to the royal marsden. Dont be afraid to ask they are not God and its your health. If you are still uncertain ring the royal marsden and they are very good they will advise you further. Good luck.
thank you very much for your reply.
I don’t think that I can get my onc to refer me, as I can’t even seem to get past the secretary to get an appt. Fell really frustrated - just want to see someone I can feel confident with - I want to feel “safe” and that I am being looked after properly, and I certainly don’t feel that at the moment. In fact, I haven’t for a very long time actually…
I have an appt with my GP in the next week or so - can they refer me? in fact, I may take your advice and just ring them - who do I ask to speak to? Help!!
GOOD NEWS IS they accept referrals from your GP. Another tip i wrote to the hospitial and complained about some of my treatment sending a copy to the surgeon and onc. I also asked for a copy of my notes and scans which cost me £20.00 watch them jump when you put it in writing, it doesnt have to be nasty just state the facts as you see them. My care is second to non because they know im a feisty old bird that will be a hell raiser if things arent right. If you ring the Royal Marsden just speak to the switch board and they will help you. The person that did my report even took the trouble to ring me and copy me in on the report to make sure i understood everything. If i can be of any help you are welcome to PM me. Im off out with the dogs now but will be back later.
I am so pleased to hear that your care has been so good since going there - reassures me that this is the right course of action for me. i really like the sound of you being a right fiesty old bird - good for you!! I feel that any fiestyness that may have been lurking within me has been slowly drawn outof me - I have had many lapses of care along the way so this has left me feeling very unconfident in many ways - I’m hoping by going to see the mardsen may help get me back on track - if I have confidence in my medical care that will help - I feel very frightened by what has gone on really - this is the last straw really - my BCN emailing the onc - not good management I feel!
I will try and PM you later Hatty if that’s OK - I am just off with dogs too.
Once again,thank you. XXXXX
I think Cancer knocks all of our confidence at some time or another, while your out walking the dogs get that confidence back, open your heart and ask for what you want im sure you will be pleasantly surprised at what can happen, your inner strength will re appear and there with be another new feisty girl on the block. Please do pm me not a problem at all.