Dulcie, I'm so sorry to read this. I cannot even imagine how upset and disappointed you might be. Are the Marsden going to look at the Scans taken by your Hospital? I agree with Tawny about asking for a Macmillan Nurse to advise and support you. Maybe they could offer some advice about possibly getting an expert in metaplastic BC to look at your next lot of scans to offer advice.
I often think it would be helpful if BC Charities could set up an advocacy service, matching patients with volunteer advocates so that patients who perhaps feel to ill or worn down to argue with medics, have someone to help fight their corner. No doubt people on this forum will think it's just Lemongrove moaning about things again, but it's sickening to read about people who need treatment and support at the most critical time, and are unable to get it.
Thank you for your replies ...i am 'drugged' up to the eyeballs at the moment with a new pain i got at lunchtime..all down the left side of back..i was on the loo when i heard something 'crack'..the pain is excruciating..GP told me to dial 999 anytime if it gets any worse...
Lemongrove the Marsden did not invite me to go back to them... i was reffered back to my own hospital for scans..
Have just read bout your recent problems with great sadness. I'm sorry that you feel your treatment has been substandard. It occurred to me that you may benefit from seeing a Marie Curie or Macmillan nurse. This will have to be arranged via your hospital or GP, but they are amazingly helpful and can visit you at home. I have recently started seeing a Macmillan nurse and they can help with pain medication, organising the prescription directly with your GP, as well as all types of emotional and physical support. They also provide a call out service if you are in difficulty.
I hope this may help.
Dulcie, I'm really sorry you met with such a negative and brusque doctor, but think you should stick with it and have the scans done to see what the Marsden can come up with. Was he an expert in metaplastic Breast Cancer? If he wasn't, and it was me I would ask to speak to someone there who has experience in that type of cancer. In the meanwhile, try and keep your chin up.
Oh Dulcie, I really hoped that you would have a better time after all the effort you went to change your treatment centre. I'm not sure how the Consultant can assume so much without the relevant tests/scans etc.
I think that you should consider getting the scans so you know what you are dealing with and which will inform any conventional treatment which might help you. I know there are so many posters who live well with secondaries.
I also wondered if you'd been in touch with the Penny Brohn Centre who do residential weekends on holistic methods. I was thinking of booking myself in on one at some point.
Take care x
Hi ladies...well we went to the Marsden as planned ..but i did not see the proff so i felt short changed! I saw a young lady doctor that took everything down in writing about me and she looked at my left leg..which i am suddenly in great pain with..then this consultant came in...rather surly and brusque..and he tells me that i am a very sick woman..( i went all this way to hear that) and he didn't think i would benefit from doing the travelling to London...he said the leg is quite possibly cancer..and probably in my brain...and the red across my wound site....it is now half way across the other breast..that is all cancer too! So he suggested the Xeloda after one go was not working ..for me..and he suggested a CT scan and a bone scan..and pallitive pain control..
So after all that...we got a taxi to Harrods and i got into a wheelchair..and off we whizzed around the store. I t was very disappointing..so after a take away as we where so tired...and some whiskey ..the next day we went to Oxford St..and enjoyed that more!
I now have a large swelling in the left hand side of my back..which is agonizing..and this morning my other knee is 'tweaking away' so i must be falling apart....i am not sure if i want to have the scans...it will only be more bad news..and i am going down the Holistic route next week...
Do you think i should have the scans...? advice please ..
Good morning...i was astonished at the speed the Marsden have responded to me ! I received three phone calls from them next day..and already ALL my scans and details are with them ..so no delays ..to put anyone off applying to go! I think they are going to be so kind and listen to me too! I shall put all my trust in them..i know they might not be able to extend my life by much...but at least i get a shot at it!
I wish i had done this at the begging of my cancer..to late to ponder now!
I am a bit concerned ..i am about to start the 'peachy' pills after weeks of delay..now if i take them..that makes me illegible for trials... the Marsden have said to go ahead and take them anyway... but i won't let any se's stop me from attending!
I am most supprised that my surgeon has suddenly requested to see me this week...as he said he didn't want to see me for a year! lol.... thats a long time for me! I wonder why ..when i have been left with a mx that is in a bad way..with now a possible spread plus skin mets..well the onc 'casually' said so! ...so not sure about ANYTHING right now!
Hoping all goes well for you Dulcie. We are all rooting for you and holding your hand while you go through all this. Have you a good Breast Care Nurse at your hospital who could support you more while you are under all this strain? I speak to my Breast care Nurse frequently, in fact I hope to see her on Friday when I see my Oncologist, and if I want to know something she can do it for me rather than trying to do stuff by phone and going from piller to post. It is very stressful when you are having treament for cancer and I fully understand your experience of pouring your tea. Your head just does not function as quickly and everything is such an effort. But we are here for you Dulcie and know just how stressed you and your OH are.Hope your referral can help with any future treatment. Hugs, Val
WOW ladies xxxx hugs all round ..i just got the news! I got the funding to go to the Marsden....can't believe it ..especially after yesterday!
I was told that the cancer may now be in the wound site..and Xmas ..no gaurantee's..!!!!
I have a dear friend from the site ..coming with me and another lady who had offered to meet me in London and take me there and be with me!
So many WONDERFUL kind helpful ladies here..bless you ALL!
Dulcie good luck for tomorrow.When I got my referral to the marsden the marsden offered me an appointment very quickly.Like the others have said contacting your mp would be a good idea if your pct don't come through with the funding,and be sure to enforce the urgency.Hope you can get to the marsden soon for some caring treatment.Sending big hugs and take care xx
Oh Dulcie-so sorry you're going through this. Its really hard to be assertive when you are feeling at a low ebb.
If you are feeling up to it I would second the suggestion to contact your MP if needed after any communications with your GP/PCT-from experience I can tell you an MP's letter is dealt with on a senior management level.
Fingers crossed for you tomorrow x
I am seeing my doctor tomorrow..and i want an answer tomorrow! Thank goodness i now have other options if needed..... I must admit my strength is not holding up ..or my mind..i went to pour a cup of tea ..into my make up bag...and that isn't stress..just tiredness and absent mindness...Both of us a getting weaker and i can't think too far ahead......i need a brain to fight with!
Sorry about the moan...
Dulcie, I'm astonished that you're still waiting for your GP to refer you. As I mentioned earlier, the NHS Constitution gives patients a right to be referred to whatever hospital they like, so your GP has to refer you irrespective of what the PCT/GP Commissioning Body would like.
Having said that, you/others should be aware that, while there is a right to be referred, the choosen hospital is not obliged to see or accept patients. But if someone has lost confidence in their local hospital, I doubt this would happen.
If your GP say's the PCT will not allow referral, ask him/her to put that in writing, and take a copy of the letter together with the NHS Constitution to your local PALS or Citizens Advice Bureau. If it was me I would also contact my MP and local Press (but that's because I'm bolshy).
Link to NHS Constitution: http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Yourrightstochoice.aspx
Hi again Dulcie-I work for the NHS and the only advice I can offer is to be really (really!) persistent and well thought out in your reasoning (referring to all the great advice from LemonGrove)-from your posts I'm pretty sure thats how you are anyway! I know its not easy when you might be feeling at a low ebb.
I'm keeping my fingers crossed for you and thanks for your advice re: waiting times too. Lots of luck and hope to hear from you soon xx
Hi Sukiem..i am so pleased you have a good GP...mine is telling me that where i live... the PCT has over spent on it's funding..so things are not looking to brilliant at the moment! I should know by next week...
I believe it should only take 3 weeks to transfer over ..if you ever had the need to!
Good luck with your treatment! x
I will post and let you know what happens..
Hi Dulcie, Thanks for your message. I went to my GP this am as I'd been told that all referrals to other treatment centres have to be done via PCT (ie GP). He was happy in principle to refer me to RM but was very clear that it would probably delay treatment by some time. I'm lucky as I live in central (ish) London so travel isn't an issue.
However I'm really recently diagnosed and due to embark on treatment in the next few weeks so on balance decided not to change at this point. On reflection I think a lot of my unhappiness was caused by feeling v scared and not in control after my diagnosis. The fact that I have a supportive GP leaves that door open if I change my mind in future.
I wish you loads of luck and hope it works out for you-I have a friend at the RM and hes pretty happy there. Please let us know how you get on x
Happynipple, I've just been diagnosed with BC and am currently with Charing Cross.
I'm not happy for various reasons and want to be transferred to the Royal Marsden. Could you let me know how you managed this?-i'm not sure whether to approach my GP or ask Charing Cross staff directly to ask for a referral.
Dulcie I don't think ringing the Marsden will help - you'll just meet with confused admin people. You need to go through the proper channels, so referral should come from your GP or Consultant. Look at the link I provided, so that you know your rights, and then write to your GP and ask them to refer you. If they continue to be difficult, contact PALS, as explained in the link above.
Dulcie, I think what your GP has told you about having to get PCT agreement/funding in order to refer you to the Royal Marsden is wrong. The rules about this kind of thing is outlined in the NHS constitution, and this clearly states that patients have a right to choose which GP or hospital they are treated at - see link below: http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Yourrightstochoice.aspx
The following suggestion is important Dulcie. You must put your request to your GP in writing, because this will make things formal, and put the onus on them to reply in writing (and they are unlikely to give you incorrect information in writing). If they say in writing that they have to apply to the PCT in order to refer you, you should take the letter, and the NHS advice above to your local PALS group, and they will be able to intervene on your behalf. The link I have provided explains how you do this.
All the best LG
There are several ladies on here who have had referrals to the Royal Marsden from all parts of the country.I asked fro a second opinion and my gp arranged it for me and i now have all my treatment there.As I live in Sussex I go to Sutton.If you go onto the RM website there is a link to asking for a second opinion and it details how to go about it.
It sounds like you have quite a few problems so don't need your gp adding to them.
Sounds like you've had a very traumatic and upsetting time of it and it must be awful to have your treatment on hold. But you deserve to have a team you have faith in - and are entitled to ask as many questions as you want to know the answers to. Your body, your life, and you're an important part of your treatment team too.
I truly hope that you get referred to a specialist that you trust - and quickly too.
Thank you ladies x i am with a very well known cancer hospital at the moment!
BUT i had the audacity to go 'private' for initial consultation last year! The consultant ..after paying him! ...told me that i did not have any cancer..when he in fact 'burst' the cyst containing the cancer and unbeknown to me...possibly caused a spread...another doc was involved also.. and because i have complained..this now follows me wherever i go..i can't say anymore on here sorry..but i have a very rare breast cancer ..
Plus i ask too many questions...how dare i...it has been like a terrible 'farce'all the way through..so far.
Sorry to hear that - I was under the impression that everyone was entiled to treatment at the Marsden. I hope you get the funding.
A bit of a personal question - but if you had the funds to pay for an initial private consultation you'd be seen really quickly and they'd be able to give you an idea of how they would envisage your treatment plans etc. Maybe it might not be any different to your local treatment, in which case it is nicer to have treatment at home rather than having to travel miles. If the second opinion tallied with that of your local team maybe you'd regain a bit more confidence in them. Also, if you had an initial consultation they might be able to speed up seeing them on the NHS.
My understanding is that your are 'entitled' to a second opinion and there is no funding required your doc is wrong in that she says she needs funding. see below which outlines how to go about it. I am surprised that she isn't aware of the process but as you say perhaps no one has every asked her before. Hope this helps.
How to get a second opinion
After thinking carefully, if you still want to see another doctor you can ask your specialist or GP to arrange it. They will refer you to another NHS doctor who specialises in treating your condition. You can also ask for a second opinion from a private doctor.
Having a second opinion doesn’t mean the second doctor will take over your care. But if you decide you want the new doctor to treat you, this has to be formally arranged between the doctors or hospitals.
If you want to see a different GP, and are in a group GP practice, you can ask for an appointment with one of the other doctors. Or you can ask your GP to refer you to different doctor. Some people may consider changing their GP or GP practice. But this is only possible if another GP is able to take you on.
Your current doctor or specialist should send the new doctor any relevant information, such as previous treatments, test results and information about the drugs you are having. This will give them as clear a picture as possible about your case.
If you are having difficulty getting referred for a second opinion, the Patient advice and liaison service (PALS) in your hospital, or local citizen advice service (CAB) may be able to offer advice.
i am sorry i can't help you with your question but just wanted to send you a big hug as you sound pretty desperate. Hopefully someone will be along soon who can advise you on this.
Hang in there
Posted on behalf of Amore Dulcie:
I have asked my doctor for a 2nd opinion at the Royal Marsden..i am in Cheshire...she has told me she has asked for PCT funding for this? and if she doen't get it ..I will HAVE to pay for it? surely this cannot be true? Or is it possible she has not had to do this before? I have a rare breast cancer that is now in the lungs and ALL treatment has been delayed due to infected mx..possibly caused by being drained 3 times ..drain removed to soon? or being tatooed on an already 'inflamed' wound? Dulcie