Follow-up scans and post op. surveillance

[Rose Woodward]

I seem to be hearing about more from patients who are being offered X-rays and ultra sound even bloods tests as follow-up rather than CT scans of Chest, abdomen and pelvis - this is dependent on the stage and grade of your kidney cancer.

Can we get an idea of what patients have been offered - are being offered by way of scan interval and type of scan X-ray or ultra sound or Ct or MRI

Is anyone being offered full body scans or P E T scan on request or after bone mets are suspected ?

We should have a consistant foloow-up pathway for everyone which is the same... what are the differences around the Country ?? i would be very interested to have a record of this and to make a plea for a published surveillance schedule so everyone knew what to expect following nephrectomy

Please do a quick post to let us know and we'll try to get an overall picture?

[Jackie]

Live in Hampshire, but attend Royal Surrey Hospital, St. Lukes cancer unit in Guildford Surrey, get regular blood test every 6wk for sutent, plus 3monthly ct scan enhanced, chest, abdo and pelvic area. Only had one full bone scan and one brain scan when first diagnosed though!

Also get regular bloodtests for haematologist for polycythemia follow ups and now for thyroid drug dosage adjustment with gp. No longer require venesections as sutent has corrected polycythemia ( thickening blood problems associated with kc).

I have also been given a 'safer' contrast dye for ct scans to protect remaining kidney as it is impaired with mets! No longer have to have liquid contrast to drink, only plain water now with newer ct machine.

Jackie
stage iv at diagnosis, both kidneys, adrenals and right lung ( lung now clear!) all other tumours totalling 9 have shrunk with sutent to date.

[Lesley]

Hi Rose
Operation and all followup at University Hospital Wales. Stage 2 (9cm) Grade 4. CT scan six monthly for the first year post op and then yearly. Consultant wanted to go to yearly after six months. When I asked him why he was happy with that he said that it was because there was no microvascular invasion.
Lesley

[bob]

Hi Rose

Live in Ayrshire. Diagnosed with stage 4 tumour in right kidney with bone mets. Had hip/pelvis reconstruction in Dec '08 and radical nephrectomy in Jan '09. Have been attending the Beatson Oncology Centre in Glasgow ever since and am now on my 7th cycle of Sutent. I have a routine blood test after each cycle. After each of the first 3 cycles I had a full CT scan. As the last one happily revealed tumour shrinkage I now have a scan every 3 months. In addition I have also had 2 bone scans. I have not had a brain scan since starting Sutent in April 2008.

Belated happy new year


Bob

[andy]

Hi Rose

When I was first diagnosed following a pathalogical fracture in my right arm in July 2006, I had a bone scan and CT scan. After a nephrectomy I have had a CT scan every 6 months. About 10 months ago I had a full bone scan after a lot of complaining about bone pain, and in December I had an MRI scan. I have never been offered a PET scan.

I don't know about a consistent follow up pathway, I would be happy if the "system" was simplified and NHS staff communicated with each other. Just about every hospital appointment I have, I seem to be repeating all the details of treatment I have had (what has the £30 plus billion spent on the new computer system really achieved?) Requests have had to be put to other hospitals for information regarding treatment I have received, the trusts I have dealt with seem to regard any information they have on patients as being their own private property and they don't seem to want to share it with other hospitals (sod the patient).

In my experience it has been a never ending round of chasing up results, appointments etc, speaking to answerphones where calls never seem to be returned (in fairness my Oncologists secretary is excellent) or messages seem to be routinely lost. Having cancer has been easy compared to dealing with officialdom.

As an example, about 6 months after my nephrectomy I had a lot of pain in my remaining kidney, I went to my GP who informed me that as I had had the nephrectomy at Darenth Valley hospital to approach them for advice, after many calls I managed to speak to someone and was informed, that as I was having my ongoing treatment at Maidstone Hospital to approach them (as a side issue has anyone ever managed to get through to Maidstone hospital on their main switchboard number? I haven't) After eventually speaking to someone I was told to, in the first instance, to go to my GP. What follow up pathway!

Please forgive my whinging but I thought my experience would be relevant to the thread, very best wishes to all.

Andy

[Lynne]

Hi Rose,

Must have missed this thread when it was started. In case you are still interested my 7cm clear cell tumour was classified as stage 1b grade 2 and when I asked about follow up my consultant (have never seen a oncologist) showed me a chart produced by the PCT (so may be used by other PCTs) divided into low, medium and high risk. My tumour - just - came into the low risk category and, as such, my standard follow up is bloodwork, mostly checking my remaining kidney function, and after the first year a chest x-ray only and that only for 5 years. In actual fact, in the four years since my op. I have had a bone scan for bone pain and two additional CTs for unexplained symptoms, fortunately all clear. Yes, I do sometimes wonder whether this follow up will pick anything up in good time but I am also very aware of the dangers of CT scans over a long period of time. It's not an easy call but I think on balance I am happy with this.

Andy, I have found that it seems to work best when my GP does the referral to my original consultant/surgeon who then agrees and organises anything that is necessary. My doctors' practice has been fantastic throughout and although I try not to bother them unless it is absolutely necessary, they have been my rock.

Love

Lynne

[Rosey Rose]

Hello Rose,

After my radical nephrectomy 4 years ago I received CT scans of the chest, abdomen and pelivs every 6 months for 2 years. This then changed to an MRI scan of the kidney area, a chest X-ray and blood tests every 6 months for a further 2 years.

I had a partial nephrectomy on my remaining kidney 4 months ago and continue to receive MRI scans, chest x-rays and blood tests every 6 months.

Regards,
Rose