Is there such a thing as normal follow-up care ?

[Suewt]

I finished my chemo seven weeks ago, I was stage 1c at grade 2 to 3, and had my post chemo scan which showed no spread and no residual disease. At my appointment with the Oncologist I thought that this should be cause for optimism but she said very little apart from if it returns we will give you more chemo. She may as well have said close the door behind you although I have never found her easy to talk to. The follow-up is patient initiated which to me sounds like a money saving exercise. I know the importance of maintaining an optimistic outlook but that positiveness needs to come from somewhere and I think my husband is emotionally drained and exhausted. A few words of encouragement from my Oncologist would have made so much difference. Does anyone else have any similar experience, suggestions etc ? I feel that now I have been dumped by the medical profession, apart from my GP.

[Hidden]

Dear Sue,

Congratulations on your remission! I'm sorry you've had such appalling treatment, and I suspect you are correct to suspect financial drivers. However, you say your GP is supportive, so I suggest you set up regular checks with him/her. A quarterly ca125 check and a physical exam if you are concerned should set your mind at risk. If there are any worries, your GP can request a scan for you.

Is there another hospital you can go to if (heaven forbid) you need any further care? I think it's so important to have trust in those who are responsible for your care.

Very best wishes,

Isadora.

[Hidden in reply to Hidden]

PS: I have just looked at the 'Cancer Research UK" website's section on follow up. It states:

"After your treatment has finished, your doctor will want you to have regular check ups. Each time you go to the hospital, your doctor will examine you and ask how you are feeling, whether you have had any symptoms and if you are worried about anything. At some visits, you may have blood tests, X-rays, CT scans or ultrasound scans.

If all is well, your appointments will gradually become less and less frequent. For the first couple of years your check ups will be every 2 to 3 months. After this, you usually have 6 monthly appointments for up to 5 years."

Sue - there is obviously no target to achieve or box to tick, or I'm sure your oncologist would be doing it. Yet again, I am so grateful I ended up in a conscientious gynae/oncology dept that has the best outcome for the patient in its sights.

I.

[charlie12]

Dear Sue

I would certainly echo Isadora's excellent first and most important point. So very very well done to you and your husband for getting to this point. My care has ranged from very good to absolutely dire, so you are not alone,

However it's incredibly sad that your oncologist is as she is. I am a healthcare manager myself , as well as an OC survivor , and I'm pretty sure that NICE guidance on OC does not recommend "patient-led" follow up at all and certainly not as a cost cutting measure.

You have been through a terrible ordeal and the least you deserve is support from your consultant. I would ask for a second opinion of this advice about "patient led " follow up and/or why exactly this advice has been given and/or to be cared for by another specialist.

I "only" had borderline disease but the follow up I was offered was annual exams plus CA125 plus imaging for 7 years. I asked I this was frequent enough as I still had pain and my consultant agreed to 6 monthly appointments. She has now said that I can be seen forever if I want.

The relationship between you and your consultant is crucial, as sadly large numbers of us need on-going care, so don't be fobbed off.

Again very well done to you and your husband , who sounds lovely, on getting so far.

Big hugs

Charlie xxx

[Suewt in reply to charlie12]

Hi Charlie - thank you for your reply, it is much appreciated. My GP will see me every three months, before if need be, and I have spoken to him about being referred to another consultant. It is not that she is rude I just think that communication is not her strong point. I have little faith in the department. All along I was told the cyst was benign, after a full hysterectomy the gyno nurse talked to me about removing the mass before she realised she was talking about another patient and then the consultant at another appointment got both the grade and stage wrong and then said it made no difference !! I just wondered what other women's experience was. Thanks again - Sue x

[suse]

Hi Sue, I was stage 1c like you,and finshed my chemo August 2010,my oncologist said i was all clear and wouldn't see me again unless i had a recurrance.I do still see my gynea consultant though every 3months,he is very good and answers all my questions,and i have had CA125 blood test which has stayed the same 17 .Just reached 12months remission and check-ups are every 4months now.Hope you can get some follow up care from your consultant.My very best wishes Sue x

[wendydee]

I'm so sorry to hear that you have had such a poor experience, but glad you are getting on well. I sit on a group called "survivorship" run in partnership by Macmillan and my County NHS trust, and they are so keen on patients having the very best experiences, If you ring Macmillan and ask for their advice on follow-up and also on changing hospitals/oncologists if you feel you have no trust in your oncologist, it may give you a clearer idea of your options. I know some parts of the country have few choices for hospitals, iot all depends on the postcode! Anyway, stay strong, stay fighting and well done for getting here with such poor support from your onc

Love Wendy xx

[nikki9]

. I have stage 4 grade 2c and have just had a check after 7 weeks from the end of chemo when i did have a scan. i was told by my onc. that i would have blood tests for ca125 but no scans unless i have some symptoms. when i asked if i could pay for a scan he said "it wont make you live any longer" so i know how you feel. I spoke to my support nurse at hospital and she is going to see if she can change me to a my sympathetic onc. We need all the support we can get at such a frightening time. I would suggest you also ask to be changed to a more supportive onc. Good luck xxx

[RuthPOvacome]

Hi I am one of the support nurses at Ovacome I am glad to hear that you are in remission at the end of your treatrment but am really sorry to hear of the experience you have had. It is a very diffcult time at the end of treatment as you feel that you should be on top of the world but actually you feel very vunerable. After all the input you have had having treatment and being kept an eye every week or so to then being told that you are going to have pateint led follow up is a frightening prospect. Is it possible for you to speak to the specialist nurse and asking for a regular follow up with her. The idea of this type of care is to try and give follow up care that is most apporpriate to your situation but if it is causing more concern then this needs addressing and your nurse should be able to help. Do please feel free to leave a message on our ansaphone and we will get back to you if you would like to talk things over or we can be of any further help or support. The number is 08453710554