Well I saw the man at the Marsden for a second opinion on my next treatment options. I am kind of soaring but can’t quite put my finger on why…but it was something to do with his incredible clinical and research knowledge, attention to detail, superb communication skills, realism, treating me as an equal not a patient. I wanted an intelligent conversation with a professional who knows his stuff…someone to bounce ideas off about which way is the best for me…given the specifics of my disaese and the other important component…me the person. And I got everything I needed.
No I didn’t get any magical treatment solutions and he’s suggesting taxol weekly next which is what my much less knowledegable local onc suggests…but now I feel I have a rationale and a plan.
Basically I need another scan (last one in May) to check again for any spread in distant organs and to measure precisely how much my cancer has grown. If there’s spread and/or more than 50% growth in regional tumours then he says do treatment…otherwise wait and see how much more it grows. He cleverly identified that taxotere and vinorilbine are the only chemos that my cancer has significantly
responded to (and gave lots of interesting reasons why…and they both apparently work in a similar way)…so he says taxol first, then more vinorilbine (though a toss up whether to do the vinorilbine first…probably not cause its harder on my wrecked bloods)…then maybe ‘if you want to something rather than nothing’ a PARP inhibitor trial. We had an avastin conversation which I’m happy to share with anyone who pms me, and am confirmed in not going for it. (though my private med insurance probably wouldn’t pay and I certainly wouldn’t.)
Funny how elated I feel…perhaps its because he cautiously called my cancer ‘indolent but persistent’…and we talked about the many varieties of trip neg disease…and I’ll post some more about this on a trip neg thread, I always feel with my very touchy feely and slightly too near the end of her career onc that really I know as much as she does…but the man from the Marsden was something else. No promises of cure, nothing changed on the ‘not curable but may be manageable front’ but real pleasure (funny word) to have such brilliant advice.
Will have to arrange a scan in a couple of weeks (ugh how I hate that horrible business of results)but not to going to rush…(reckon I can afford to be abit indolent too)
I’m doing lots of little holidays this month…back from one to do this appointment and off on another to France in a couple of days.
I’d like to take this man to a training session of indifferent doctors
and use him as an example of what really excellent professionalism looks like.
The private suite and waiting room at the Marsden in London is a very
strange place indeed. But the only repeatable anecdote is that I saw one woman unpack her Susan Love Breastbook from her suitcase.
Glad things went well at the Marsden Jane…what a breath of fresh air to meet a medic so proffessional in everyway…and one who treated you as a person too…it’s strange isn’t it how our confidence grows [not sure if confidence is the right word] in medics who speak to us in this way.
You must have met a real variety of consultants and ‘professionals’ along the way, how nice that you have found one who you really have a rapport with and who you (more importantly) have confidence in.
I will look out for the Triple Negative conversation on another thread. Thanks for sharing.
Wishing you happy holidays.
Glad to hear it went well too Jane. That man instills that attitude right through his team or he selects them because they are like minded. Hope you enjoy the rest of your chemo free break.
Hey Jane
Glad you are happy with your meeting, came on to see how you got on. Interesting that you had the avastin conversation and came out on the no side …I know what you mean about waiting rooms !
Glad to hear that you are pleased. It does make such a difference. I was mis-diagnosed by an obnoxious, arrogant man eight years ago.When I eventually found a lady consultant i trusted, some time later;It was like moving forward in time about 20 years. It does instill you with confidence and trust if your Consultant is articulate, well-informed and moreover treats you as an equal. My consultant at Linda Mac.in Liverpool, always presents me with all of the options and scientific evidence behind them. She always leaves the ultimate choice to me (or at least seems to). Julie x
Ah Jane, it is so good to ‘hear’ your upbeat tone. He sounds excellent and you can trust him without having to second guess his advice.
Have a lovely trip, and gets lot of rest!
Jane, I am pleased that this Consultant was so learned and professional and one in whom you are able to have confidence. I know , through another health problem that I had , how a relationship with a Consultant who you trust can give you a renewed energy.
Perhaps your own knowledge and intelligence was a breath of fresh air to him.
Enjoy your hols.
Margaret
Good news Jane - sounds like you have found someone a bit special and are walking on air.
I’m really interested to know how you got the 2nd opinion thing to work. Are you under the NHS? I saw mention of “private waiting room” and wondered if you had opted to pay someone for another point of view?
Have a great holiday.
Molly
Glad to hear your visit was not in vain and you have come away with a clear direction of your next steps.
I must admit that my visits to the Marsden [I followed my surgeon there as I had such faith in her] are always efficient, informative and yes, I feel like I am being treated as an intelligent adult by the people I deal with there.
For my terrible sins (socialist guilt and all that 80s stuff) I have private medical insurance…taken out on a whim after I’d heard a bad story about shortage of pillows in a grotty north London hopsital, when offered a deal through a new job just 5 months before diagnosis. Its not a particularly ‘good’ policy as I have a limit on outpatients appointments but its another area where’s its hard to drop in and out of the NHS. So I saw the guy privately (will part pay and part get reimbursed) and got half an hour of his time. I asked my local onc to refer me which she was happy to do. If on NHS I could have been referred to him on NHS…but might have had to wait longer to see him. (though he was on holiday so had to wait anyway!) I got his name through these forums and was pretty sure he’s one of the best in the country.
Hi Jane
Obviously delighted for you that this guy listened and spoke with such knowledge and you came away feeling so ‘good’ as comes through from your post.
I am very very angry and sad though that we have to have ££££ to get what should be available to every single cancer patient.
Also we have to have a ‘bag full’ of knowledge to get people to explain all the options.
I used to want to cry when my friend was going through cancer treatment the same time as my mum, she would tell me of her 2minute waits int he waiting room the counsulant phoning the same evenin with results. Where as mum and i sat for 4 hours at times in the waiting room and waited weeks for results, plus the filthy pillows covered in blood.
I dont blame anyone for spending money on their health after all we cant take it with us and as i read recently ’ your health is everything’
Just sad that even with the recent nice decision on drugs and co payment many people will get a second rate care.
dear Jane I would be very interested in the triple neg discussion you had with ‘the man’ is it somewhere yet?Maybe you could also put it on thr dedicated forum on the other site?So very glad that it went well,for him to have inspired your trust like that is fantastic.Love Vx
From what I’ve gleaned from all your posts, this obviously is the kind of person for you - so glad you found him. If I ever find myself in your position, this is exactly what I would want too. Wishing you the very best with your treatment.
So so glad you found an excellent doctor at the marsden Jane,your enthusiasm for his expertise and professionalism shines out of your post…you have a wonderful ,relaxing time in beautiful France…sending all my best wishes Jane…Doolallyx