Will it return ... ?

[emcee46]

Sure this has been answered before, but, as my partner enters her (so far) successful 'last' session of chemo and moves on towards probable radiotherapy, I'm starting to research these further stages and would be really interested to hear this forum's views.

The two major questions I have formulated so far would be:-

1) Even if surgery is finally recommended here, I have this nagging feeling that this MAY aggravate the 'thing' somewhere along the line that makes it come back with a vengeance in times to come - by maybe having dragged the tumor out of her body leaving active cells to multiply wherever they may have touched;

2) Even given that this simply doesn't happen and that the tumor cells have all been killed - leading to the decision to actually remove it from her body - it also seems to me that, eventually, the six-monthly checks (or whatever they decide upon) will reveal the cancer has come back anyway.

It seems I read all the time that some people are given periodic weak further doses of chemo to keep the cancer from coming back, whilst others are simply told they're in remission before finding that, despite this, it's returned again.

Sorry that this sounds a bit jumbled, but I'm sure someone out there has some answers to help me navigate through this ... ?

[Nardobd]

Hi Mark

We're at about the same stage (my husband has just two treatments left to finish chemo), so I've been looking into these types of questions too. The following info is from a combination of research, speaking to clinicians and general reading.

Firstly to deal with radiotherapy, we decided that it wasn't right for us. Partly this was because it requires short daily attendance at hospitals for about 5 weeks if you're having standard radiotherapy and Ted hates hospitals. Another factor was that it would have an effect on his quality of life. Ted would also have had a weaker chemotherapy regime with the radiotherapy to assist it. As I understand it, the major side effects are nausea and fatigue. After six months of chemo, Ted doesn't feel up to dealing with those side effects. Finally, his first wife died of melanoma (skin cancer) despite having had radiotherapy and he doesn't really believe that it will help him. The consultant told us that it generally gives about an extra three months on average.

There is an alternative type of radiotherapy, known as "Cyberknife". However, that's not generally available on the NHS yet, although they are planning to install the cyberknife machinery in a very few NHS hospitals over the next few years. I understand that there is a private clinic in Harley Street which is offering treatment but generally the NHS will not agree to pay for treatment in this clinic. There is one exception I've heard of but that patient didn't have pancreatic cancer and the cost of treatment to the NHS was less than if the patient had been treated on the 'normal' protocol. The Cyberknife involves having gold seeds implanted in the tumour by needles and then concentrated radiotherapy which is attracted to the seeds and which can accommodate slight movement caused by breathing to ensure that all of the radio waves are concentrated on the tumour. On the Standford website (the technology was developed at Stanford in the US) they say that their early trials indicated that the Cyberknife either destroyed or stabilised the pancreatic tumours for the rest of the trial patients' lives but that given the aggressive nature of pancreatic cancer and its tendancy to spread the patients often developed secondary tumours in other organs.

As to surgery, I hate to be the bearer of bad tidings but when I asked what the chances are of Ted's tumour becoming operable I was told that it happens in less than 1% of patients who were inoperable prior to chemo. Obviously, surgery is only successful if they can remove the entirety of the tumour and the abnormal area of tissue which surrounds it. If even one cell remains then the cancer will return and possibly in a more agressive form.

Ted's consultant described chemo as being a method by which they hope to slow down the growth of, or completely stabilise, the tumour rather than to induce a remission, which would indicate that the tumour has been completely eradicated (at least for the time being). Occasionally, as with Ted and your partner, the chemo will lead to a reduction in size too. However, it is probable that, at some point, the tumour will start to grow again and/or spread to other parts of the body. This is monitored by three-monthly checkups which will include the tumour marker test. It is possible to have further chemotherapy (known as 2nd line therapy) and even, perhaps, a 3rd line if the consultant thinks it appropriate.

Given that the follow-up assessments are quite widely spaced, it's important that you don't wait until the next appointment if you feel that your partner needs to be seen earlier. If you or your partner are concerned then ring the clinic and ask for an earlier appointment so that you can catch any resurgence quickly. You'll know the particular symptoms your partner had but (from the top of my head) the obvious ones are jaundice, pain, digestive difficulties, pale stools, fatigue, bloating, losing a lot of weight, generally feeling unwell. You might ask the consultant if there are any other signs to watch out for and, of course, others may appear in the "symptoms" section of the website too.

Phew! I'm rambling again. Sorry for such a long post.

Best Wishes

Nicki

[emcee46]

That is an absolutely fountain of information Nicki - we may be on par as far as our partners' PC treatment is concerned but, although I thought I'd done a fair amount of research, I'm way behind you. Many, many thanks - I'm off to try and digest it now! In closing, I have to say that, although we've never asked about my partner's prognosis (and she doesn't want to know anyway), my own research suggests that it's one cancer which they haven't managed to even contain to any acceptable degree yet. Naturally, though, we have to soldier on until they do ............

[kezza1]

had an unsuccessful whipple july last year after healing started chemo had 4 months of chemo ,gemzar and cicplatin, then a month of radiation.Further tests showed tumour had shrunk and had a successful whipple in january this year removed the tumour completely deemed stage 1 no lymph node involvement and clear margins. Had further chemo to mop up any nasties got very sick due to kidney damage caused by chemo so had to stop after second set of treatment kidney numbers are now on the improve and I am feeing great right now oncologist is happy with all my numbers as of today.1 year last monday was when they found my tumour so its been a hell of a year.Surgeon tells me i will see my daughters married I trully hope so cause the youngest is only 3.

[emcee46]

That's a cheering story and I'm genuinely - and obviously - pleased for you beyond words. It's certain now that there are going to be more and more success stories regarding PC as time goes by. Maybe we sometimes lose track of the fact that we (well, some of us anyway!) come from an era where mere mention of the word 'cancer' meant automatically that you started to tidy up your life. However, with more of that inbred spirit that keeps us all 'coming back for more' coupled with constant advances in the treatments, there really is no option other than to keep going and simply 'believe'.

[Dorset44]

I am new here and reading others experiences help.

I have no family ... just Hubby and I.

Hubby is 67 and always been in the best of health.

Diagnosed in June 2009 . he had a successful Whipples. Had two more major surgeries to go through , so Chemo was not an option as he was not strong enough to take it. One more tumour had to be removed from the Bladder.

Everything went well .....

Until ...13 months later - another tumour has reared it's ugly head in the same pancreas area again !

Chemo and Radiation start this week.

If you saw my Hubby you would think there is nothing wrong at all . He has handled everything so well. Stayed positive throughout and will not let this beat him. We have had a long journey together and we know that the Chemo and Radiaton will be another curve in the Road. .... but ... staying strong and positive I am sure has been the best thing. I don't say it has been easy... the tears I have cried behind closed doors have been mine alone , but we have found that the Doctors/ surgeons we called them our ' Angels ' have been top notch.

We saw the Whipples surgeon when he told us about the latest tumour and he said talking to the other medicals in the room. ' This man is a walking miracle , he could have died at least twice , but he wouldn't quit ' !! Boy ... that was a statement to be sure. !

I feel at times I am very alone , then I look at him and know that I have had the easy ' side of the road ' and know that IHave to be strong and keep that smile on his face !

Thanks for Listening.

Diane ...

(Dorset44)

[volmod]

Dear Diane: Welcome to our little community but sorry for what brings you here - after all this time. Thank you for sharing your story. You seem to have been through so much already that it’s asking a lot for you to carry on the journey. And no-one in similar circumstances would ever tell you it’s an easy ride to be carer or companion; it’s just natural to let the tears fall sometimes. That in itself can be such a release and a relief. But it also speaks volumes for your husband’s courage and fortitude that his own surgical team have paid such a tribute. It’s truly inspirational. Please keep fighting! You're both in my thoughts and I hope you manage to stay in there - hard though it is - because giving up is not an option you want to embrace. Warm regards, xx Vee ( moderator @ pancreatic cancer uk )