After treatment

Hi

This is my first time on the Forum , although I have been accessing it for a while. My husband is just 48 and was diagnosed with inoperable PC in April last year, although symptomatic to start with these symptoms quickly disappeared with a drug regimen, he quickly felt a lot better ready for chemo. My husband finished his 6 months of chemo and 5 1/2 weeks of radiotherapy plus oral chemo in the middle of December. Now we are to wait 3 months for a CT scan to see if there has been any change in the tumour size. Is this a normal length of time to wait? it seems an awfully long time, I feel we are just waiting for symptoms to reoccur. Any little twinge and I start to panic. Generally he is quite well apart from feeling tired he is only taking Omeprazole and a blood thinning drug as her developed blood clots in his arm whilst having the IV chemo. I just wandered what other people had experienced re the length of time for the scan. Thank you Helen

Hello Helen,

I suppose different centres have different protocols, but when I had my chemo I had scheduled CT scans at the start, the midpoint and the end, plus an extra when my CA19-9 tripled.

You don't tell us why this is inoperable. If it is because of vessel involvement then there have been reports of chemotherapy (Folfirinox) rendering these operable in up to 25% of cases. If this is a possibility you shouldn't be waiting three months to find out.

Do you know what the biomarker CA 19-9 has done?

Mark

Hi Helen and welcome to the forum. Sorry to hear about your husband's diagnosis.

Has he not had a scan whilst he's been having chemotherapy, usually half way through? I find that quite odd! Surely they want to see what the result of his latest treatment is?

They do usually put you on a chemo break when the course is finished but its usually after a review of scan.

Others on here, understandably, don't want to wait for a recurrence of symptoms so they have been researching alternative and relatively new treatments, ie Nanoknife and Cyberknife. You do have to push for the treatments and they are only carried out privately at the moment.

Julia

Hi Helen,

So sorry to hear you and your husband are having to cope with this disease. My husband has had surgery but they couldn't remove all the tumour, so is treated as inoperable. He is nearly at the end of his chemo and was scanned half way through and will be scanned shortly after he finishes. Pretty sure this is normal, and others here will advise you. The nurses here are in on Thursday and Friday so it might be worth giving them a ring for some advice.

Take care,

Nikki

Hi Helen, I have been down this route and can at least share my experience with you. I was diagnosed in December 2012 and started chemo (GemCap) in January 2013 followed by five and a half weeks (28 fractions) of chemoradiotherapy (radiotherapy with Capecitibine) which finished on 16th June. I was told I would have my next scan three months later to ensure the effects of the treatment had been given chance to have the full effect on the tumour. It transpired that my scan was in fact two months after the end of treatment and it did show a reduction in size of my tumour from 3cm to 2.2cm. But back to your original question, my oncologist stated that three months is the norm for a post radiotherapy scan.

Hope this helps!

Steve

X

Hi helen, sorry to hear of your husbands diagnosis. My husband also had chemo then chemo alongside chemoradiotherapy. A ct scan is done after 3 months, as radiotherapy continues to have an effect after treatment has stopped. A ct scan immediately after radiotherapy has stopped wouldn't show the full benefits.

Regards

Bee xx

Helen, I missed the important reasoning for the three months wait as detailed by Bee. Both my Oncologist and Surgeon confirmed exactly what Bee has stated.

Steve

X

Hi all,

Exactly right Steve and Bee!

Helen, this is the reason for the wait - the radiotherapy. As Steve and Bee said it is because the Radiotherapy continues to have an effect for some time after the treatment stops, but also, it can cause inflammation in the area which is being treated, so this would mask the results of what it has done to the tumour.

Its very usual to wait so long after radiotherapy - its the norm, so although its frustrating having to wait, there would be no benefit having a CT scan before this.

That said, I am sure that you have contact details for the Nurse specialist where you are, should there be any issues to deal with in terms of your husbands health. You can certainly contact them if he becomes unwell for any reason.

You mention his medication - is he taking any pancreatic enzyme therapy at all? He may need these at some stage, if not already. Do contact us at support@pancreaticcancer.org.uk should you need further help.

Kind regards,

Jeni.

Thank you for all your replies. Steve your story is just like my husbands. The same drugs and length of treatments. I now understand the reason why the length of time is 3 months as you say the radiotherapy is still working and it can cause inflammation. I have had to suggest and demand things move quicker then they were in the beginning of diagnosis. I have done lots of research on the internet and have even contacted a private clinic re cyberknife. I ask lots of questions at every appointment. The problem I have is that I still feel very angry that this is happening and I haven't accepted it well. I feel I am battling continually and each time I am told the prognosis is poor and there is nothing else that can be done apart from more chemotherapy. The tumour is inoperable due to vessel involvement , when I suggest that the radiotherapy will shrink it away from the vessels making it operable I am told unlikely. I seem to be the only hopeful person, all the doctors we have seen haven't been optimistic. His CA 19-9 dropped from 400 to 38 during chemo. To have radiotherapy my husband had to see a different DR at a different hospital, this oncologist/radiographer doesn't go by blood markers, more by scans and how the patient feels. However he continues to feel fairly well but tired.

Thank you

Helen