Hi everyone,
I was just diagnosed bc 1 week ago. I’m still in shock but need to make decisions… First about clinical trials. Has anyone been on these? and hospital choice. Could ushare ur opinions about St. Mary’s hospital and Royal Marsden. I’r really appreciate your thoughts that would help me to make the right thing.
a HUG
Hello Hopes
Yes, shocking and frightening. I was treated at the royal marsden (sutton) . Excellent, thorough, “on the ball” as you would expect in a centre of excellence. I was offered a clinical trial at my first appointment- if you want to have a quick look at clinical trials, google in “find a clinical trial” and it will come up with the cancer research uk site, but your oncologist should be able to advise you on trials which would be open to you.Not an easy time. Good luck with the decision making.
Cherry
Hello Cherryred
Thanks for your posting. I wasn’t sure about my hospital because first , the surgeon just said without prior preparation you 've got bc and in your case will have to have a mastectomy and that’s it . Then , Ijust saw my oncologist for 2 minutes , because the place was full. I am not a patient of the Royal Marsden, but I think Icould ask a referral from my gP.
I found the clinical trial on the page you told me about. Thanks again.
Hopes- - This is all pretty scary stuff ( that we all know only too well), and you really need to have confidence in your medical team so I would urge you to seek a referral to a centre of excellence if the travelling isn’t too awsome.Sometimes it’s just personalities but I felt it was important that my doctor’s gave me “time” -particularly at the beginning when I had questions and lots of information to absorb. I dont know how well supported you are but take an extra pair of reliable ears to appointments with you and get them to make notes.
In posting again, your request for info will come back to the top of the page. When posting on here your "question " can disappear down the page quite quickly and can be missed by others than can offer loads of sensible advice if your’re ever short on responses, it’s not that people aren’t interested-so keep posting!
Cherry
I’d go to the Royal Marsden as it is a centre of excellence and according to dr foster’s website the breast clinic there has the most patients. therefore they are likely to have the most choices of reconstructions etc
My surgeon now works at st mary’s and I don’t rate him very highly - he basically lied to me about the results I’d get from segmental mastectomy surgery. I’d rather he’d been completely straight with me. If you are interested in the aesthetics of breast surgery try googling breast conservation or mastectomy, and ask your surgeon to show you photos of the results and ask to see a patient who has had surgery as the camera sometimes lies.
Preferably see a person with a similar breast size to your own.
Mole
Hi Hopes - oh, do I wish I lived in the London area and had access/referral to the Royal Marsden or indeed, Christie’s in Manchester. No such luck, but I had wonderful treatment at one of the 6 breast care centres of excellence in Plymouth, at Derriford Hospital. My last Oncologist must use up many carbon miles between Plymouth and the Royal Marsden, where he is also an Onc
I don’t know much about St. Mary’s except it is a teaching hospital, where my nephew worked for a while as a PH.d cancer research student, my step-daughter worked there as a medical student. If I had the choice, as you seem to have, I would plump for the Royal Marsden. You really can’t get much better than that.
Medical trials - they don’t do them down here in Cornwall/Devon that I am aware of, but if you go on one, you do get much more personalised treatment, with regular scans. I would exhaustively research what the trial is about, as they do come with disclaimers, and not without risk. However, as all we bc survivors know, these trials are essential for future patients. I went on a medical trial some 25 yrs ago for Crohn’s and it was stopped some 3 months into the treatment - no-one ever explained why, and that does fill me with foreboding. I never found out if I was having the new experimental medication or a placebo. I am a lot more savvy now.
I am intrigued as to why you are thinking about going on a medical trial…do you have an unusual bc?
I am now 4 and a half years out from dx - two surgeries, chemo and rads and now on Arimidex. I am quite complacent with my treatment, but always aware of future recurrence.
I was offered either, a lumpectomy with rads, or a mastectomy -I knew zilch 4 yrs ago. My husband, a scientist, said, go with the lumpectomy, you can always go back for a mastectomy. Even though I had extensive spread to my lymph nodes, a mastectomy was never suggested after the two surgeries just (aah, I wish!!) chemo and rads.
It was a deep, dark pit, as I saw it, but eventually light does dawn, and I am happily here some 4 yrs later with no mets.
Take care,
Liz.
A friend of mine praised the care she got at St Mary’s.
Yes the Marsden is a centre of excellence and great But I’d be cautious about travelling a long way for treatment particularly if you have to have chemo or radiotherapy.
But it is important to have confidence in your medical team.
I know several people who speak highly of the team at the Royal Free in Hampstead which might be a bit nearer for you.
Best wishes whatever you decide.
Jane
Hi Hopes,
I had my surgery at St. George’s in Tooting and start radiotherapy at the Royal Marsden in Sutton next week.
2 friends have recently had surgery at the Royal Marsden (1 only 2 days after me) and they rate it highly. I must say that I was there yesterday for radiotherapy planning and it is a very clean, calm environemt.
Good luck and best wishes,
Kat x
Hi Everyone.
Thanks to you all for your comments and advice. It’s great to know there are people who supports you in some way .
I’d already have the referral to the Royal Marsden but I also agreed last week to be part of the Neo-tango, a clinical trial.
I’m suppose to start the chemo next Tues. and I don’t really know when I’ll have the appointment at the Marsden.I don’t want to wait too long for the treatment, but on the other hand as some of you said it’s important to feel well and trust your medical team. I’d already decided signing in for the trial at St Mary’s because Ididn’t know about the Marsden.
I think I should be more confident and positive , especially before my treatments starts, but I don’t know what to do now.
Best wishes for you as well.
Hopes