Need advice on dealing with oncologist

[Neona57]

I have been fobbed off continually by my oncologist and members of his team. I visited an oncologist in London privately 2 weeks ago. She was very knowledgeable and said that as I have clear cell ovarian cancer, which carries a higher risk of clots than other types, I should be on blood thinners. She told me to ask my onc to refer me to haematology. However he dismissed the idea and said that I didn't need to be on blood thinners. So I asked my GP and he said he could only refer me to haematology if he had a letter from the doctor in London as he could not otherwise go against my normal onc. So I phoned the doctor in London who said she would phone my onc. I don't know the outcome but know that he , my onc, is hard to get hold of and doesn't answer his emails. I have an appointment with my onc on Tuesday and am very nervous about my ability to stand up to him and get the right treatment. Any suggestions of how to handle this and any patient rights that I have would be gratefully received, thanks, Wendy

[Katmal-UK]

Hi Wendy. Ring PALS at your hospital and explain the issue. (Patient Liaison). They will be able to advise. Good luck. Kathy xx p.s. I didn't get on with my onc found him too abrupt and they changed me over to another.

[Neona57 in reply to Katmal-UK]

I noticed there was a PALS office at the hospital - maybe I'll have a word with them. My onc is nice enough but it is the fobbing off, lack of communication and " you don't need to know" attitude. Also total lack of urgency and empathy. The blood thinners is too important to let go as I have already had a pulmonary embolism and may get excluded from clinical trials.

[Lily-Anne]

I also have a clear cell element but do not need blood thinners. The risk of clots is while on chemo but they monitor this with blood tests. If you don't get on with your oncologist ask your GP for a new referral

LA xx

[85live4ever]

Hi Wendy, I know where you are coming from I have been fobbed off many times. This is a very important point that needs to be taken seriously by your onc. One of the lovely ladies on here takes the information she wants her onc to responds to from the computer & prints it off & gives him a copy.

I don't have clear cell so I can't help you with that side of it but I do know taking my daughter in law works for me. If they are fobbing me off she then gives her opinion & at times it has helped them to changed their minds. Do you take anyone with you? If not see if you can even if they don't speak up it might give you more courage to challenge him.

As for your GP is his hands tied that he can't refer you to someone that could pervent anything bad happening. Is it to do with money, why I say that is when I was very depressed many years ago I wanted to see a counsellor but no one wanted to refer me because they would have to foot the bill.

When you go on Tuesday try & bring this issue up eary on in your appointment if he fobbs you off give him the private onc's phone number & tell him to give her a call. If that doesn't work & you are feeling brave ask if there is another onc you can see over this matter because you are very concerned. I am sure there will be others on here that will be able to suggest other ideas. Good luck keep us up dated take care Cindyxx

[Neona57]

My next-door neighbour has said she may be able to come with me. Good idea about printing the articles and taking them. I could leave them for him then if he wizzes out of the room and doesn't come back which is what happened last time. I suppose that there must be another consultant in the hospital -it is the only hospital we have so not too much choice. The consultant in London said I could go to haematology up there but the travel costs are very high.

[85live4ever in reply to Neona57]

Hi Neona, I recently found out you can get a sum of money from the Macmillan. I went in there just before my ct scan & was told about it. You would need to fill in a form but you can spend the money on what ever you want to. In your case getting to see a haematology. It might be an idea to look it up on the Macmillans website.

I don't think much of your onc to disappears while in a meeting with you. I understand he is busy but that is so rude. I realize it's hard to changed your onc or hospital but he sounds very difficult. Lilly- Anne & Kathy's comments where very good to take on board.

Great if your neighbour can come than that would help. Try & make a list of questions to take with you. Don't let him make you feel small this is your life not his. Please keep us up dated. Take care Cindyxx

[Neona57 in reply to 85live4ever]

I will def have a look at the Macmillan money- I know the doctors in London will refer me to haematology up there but it will cost at least £200.00 to get there so this could really help. A friend has also sent me some good articles to print off so this might help as long as I can keep him in the room!

[85live4ever in reply to Neona57]

Hi Neona, I can't recall how much it was but I am sure it will be on their website.

That sounds great any evidence that you can take with you can't hurt. Let's hope he gives you a good appointment & listens to your concerns. I will be thinking of you on Tuesday let me know how it goes. Take care Cindyxx

[Howick01]

I have clear cell but only had blood thinners for 5 days post -op.

Take care x

[Neona57]

After all the worry my onc was great. He was very supportive of me going to London for a phase one trial and said that that is what he would do-if he were me. So the best answer I could have hoped for. He also referred me to haematology and I am now on rivaroxaban though unfortunately it is making me rather nauseated!