Feeling helpless and looking for answers

[Dancer99]

Hello This post is about my Dad, back in April he had a upper Right Lobectomy for a T2a NO squamous cell carcinomas which he recovered well from and has put weight back on and looks fantastic! He had a scan in May which was clear but in October his scan has come back with possibly 2 new toumours a lymphadenopathy in right paratracheal station and 4cm mass at post end of his thoracotomy wound. There is also concerns as it is close to his vena cava. Dad was basically told by the surgeon I’m sorry it’s returned and I can’t do anything further for you go and enjoy your life and I will refer you back to the oncologist! As you can imagine we have all been in pieces about this !! So far he has had a pet scan done which we will hopefully have the results for today/Monday but it’s looking highly likely it is cancer on his scar line and he is also having a biopsy done on Monday to confirm what type of cancer this growth is. So far the oncologist hasn’t given us any other treatment options but chemo and radiotherapy. And given bleek views of the second tumour is a different cancer as they can’t do much for it!! What exactly does this mean. I am looking into all sorts of treatments and countries to which may have the best possible treatment for my Dad I have accepted that we may never be able to get rid of the cancer but what I want is the best treatment I can that will provide my Dad a good quality of life for many years to come!! I am wondering had anyone been treated with proton beam therapy for their lung cancer? I see that this is something that is used in America. Any adivece about any of my dads case would be extremely helpful as we currently feel we have been let down by the system with a number of areas!!

When Dad had his first tumour removed he was advised at that point he did need any follow up chemo or radiotherapy, which now makes me angry as I feel if he had of had this treatment we may not be in the situation we are in today!!

Many thanks in advance

[Dancer99]

Sorry there is a typo it should say he was told he didn’t need follow up chemo and radiotherapy

[JanetteR57]

Hello. sorry to read this - I've just responded to your same query on the facebook page. I fully understand your fears and concerns. I felt the same when my dad had bowel cancer 29 years ago and within 6 months it had returned (what I now know is that they hadn't removed it all in the resection/surgery). He didn't have chemo and 27 years later, another cancer appeared in his bowel - once again he's had radical surgery (we didn't expect him to get to 60 yet he'll be 89 in February) but this was a different cancer. Don't be angry about him not getting chemo - I had a left upper lobectomy in Dec 2010 and suspected recurrence within 18 months at the site of the scar but it turned out to be inflammation - thankfully. Your dad only had his surgery in April - I had mine almost 8 years ago with no follow up treatment except 'watchful waiting/vigilance i.e annual chest x-rays. Having met so many patients in recent years living with side effects and late effects of chemotherapy, I'm extremely glad I didn't have it after having had a 7cm tumour removed that was stage 2b, N0. In the last few years much more funding has been invested in lung cancer research and treatments and now there are so many options dependent on the pathology of the tumour and any mutations in the patient and particular biomarkers. Trawling the internet will drive you insane and most likely terrify you. I suggest you call the clinical team's secretary or ask to see a lung cancer nurse specialist to discuss the specifics of your dad's case to review the options. The different treatment modes are offered dependent very much on the individual's circumstances, general health/fitness (performance status and any other health conditions they have) and the biological hallmarks of their cancer. There has been good success with other treatment modes if surgery is not possible - I'm thankful that I had that as only 11% UK patients are eligible for surgery (due to often the late stage when it's found or where the tumour is) but cyberknife/SABR has good results and the combinations of chemo/radio/immunotherapy are all being tried out. Proton beam has just come to the UK (Christie and UCL) but still early days. If you discuss what is on offer, and the potential side effects and late effects for your dad with his clinical team, then he can explore what might offer him the best quality of life post treatment. Try not to panic (easier said than done) but really, the combination of treatments is like a Rubik's cube and many will not apply to your dad so no point in learning about things that won't be relevant. Better to focus your efforts, energy and emotion on the 'what is' rather than the 'what if' in my experience. Good luck. x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Dancer99

So sorry to hear about your Dad and the unfolding events, and how this must be such an exhausting time for you all.

JanetteR57 has provided an excellent response with relevant experience and good information.

If the treatment options are limited, you may wish to consider a clinical trial. This could be discussed with either the lung cancer nurse or Oncologist.

If you wish to discuss anything you can call us on the free nurse led helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team