FIL's cancer - wish I knew what to expect

[juneau]

I don't know if anyone can shed any light on this, but anyway, this is the story:

FIL was diagnosed with oesophageal cancer last May. It was quite a big tumour, but he had aggressive chemo- and radiotherapy and around Christmas scans revealed that the tumour had completely disappeared. However, during his treatment small spots were seen on his lungs and in April his doctor decided to start a different kind of chemo to target them. They began to shrink, but then FIL had a bad fall (caused by anaemia due to the chemo), and broke his hip. So he had to take a break from the chemo, have a hip replacement and then rehab. All this took several months.

A new scan has shown that the 'spots' have grown again, so now he's back on chemo. He's very thin and quite frail and has struggled to regain any of the weight he lost last year during the first course of chemo. He's 74, a life-long pipe smoker, and has always had a poor diet (weekly trips to McDonalds, lots of red meat, hardly any veg and no fruit).

DH is in denial and thinks the lung tumours are unrelated to the oesophageal one. I suspect they are secondaries and the cancer is on the march, but I have no medical background and I only ever hear news second or third hand, so any insight would be great.

[mumonashoestring]

First off, sorry to hear about your FIL

Has there been any mention of what type of cancer it is, or what stage it's at? Stage 2 for example, or 3? This information would allow you to work out quite a bit without actually having to prod for more information. There is some amazing information on the Cancer Research UK website and it can help you find your way through some of the jargon and start working out what to expect in terms of treatments, symptoms, outlook etc.
www.cancerresearchuk.org/about-cancer/oesophageal-cancer

[juneau]

Thank you. FIL's doctor was reluctant to 'grade' his oesophageal tumour (which is apparently common with that type of cancer). However, if it has metastasised then I think it's stage 4 (could be wrong on that - like I said I'm not expert).

[Stopyourhavering]

It is possible to have synchronous tumours( ie both lung and oesophageal occurring at same time) however given your dads previous diagnosis , I would think the most likely scenario is that these lung deposits are secondaries.....I'm afraid for this type of tumour , second line chemotherapy can be quite unhelpful as it quite often can worsen quality of life...for little gain in quantity of life
I think supportive care needs to discussed, eg if your fil has problems with swallowing , he may be offered a stent to keep open the gullet and allow him to eat
He will be offered blood transfusions if anaemic and analgesia to keep any pain under control. I'm afraid all this is merely symptom management but can be available as an out patient so that he can stay at home for as long as he wishes. You may find he will be referred to a palliative care team at some point
He should have a Clinical Nurse specialist (CNS)overseeing his care, they can discuss his care ( but only with your dads consent)
Sorry about all this, it is a terrible disease and in my line of work I see it all too often I'm afraid
Hope you get some answers and support

[juneau]

Thanks stopyourhavering. He's in the US, so the support system is slightly different and while he's had very aggressive treatment, which knocked out the primary tumour last year, he's not had any home support that I can see. If he has a crisis (a fall, extreme nausea, etc), he has to go into hospital. I haven't heard that anyone has visited him at home or is providing any nursing, etc, in the home.

It was Thanksgiving yesterday so we Skyped with him. He looks terrible. He's lost so much weight that his cheekbones are sticking out. He looks like he's starving to death. He's been suffering with a lot of nausea from the treatment and can't keep anything down, but I'm seriously worried about him and whether he'll make it through the winter. My DH seems strangely detached and unworried. I feel like I'm really seeing his dad as he is (very ill, underweight, undergoing punishing chemo when he's not got any energy or body-weight reserves), while my DH was just lecturing his dad about eating properly. Poor man can't eat when he's suffering with debilitating nausea.

I'm really unsure what to say or do. I feel FIL could die at any time - if not from the cancer then from the treatment or pneumonia. I feel really that DH (at the very least - but probably all of us), should visit so he can see his grand kids. I fear he may not have much time left. Yet DH isn't pushing for us to go there and visit. WWYD?

[sarahC40]

Dear Juneau,

Firstly, I'm sorry - this is so horrible and hard. I don't have anything useful to add about his cancer, but my bil (over the pond) had the same detachment about his db (over here).

He did lots of practical stuff (searching for treatments and info, but it took a series of photos and an extremely blunt phone call from me to break through this shell and get him to react to reality.

It's so individual, but I wanted to say I feel for you, as it's hard to know when to push and when to stand back. For what it's worth, I was glad I pushed when I did.

[Chasingsquirrels]

I'm sorry to read about your FIL.

I've no medical qualifications and am posting from the viewpoint of having lived through my husbands diagnosis of oesophageal cancer last April, with liver secondaries identified in May. With a diagnosis of 12 months if lucky.

He initially had a stent fitted in mid May as his the tumour obstructed his gullet to the point that he couldn't take in fluids.
He then had chemo over the summer which reduced the main tumour and the liver secondaries.
By mid September the prognosis had improved to 2-4 years.

In October his swallow got worse and the main tumour was growing again although the liver secondaries weren't. He had another stent fitted and radiotherapy in early December and this improved matters.
In late January he started being sick again and a scan showed the liver secondaries were growing and nodules in his lungs.
He was told 3-6 months, or if he had 2nd line chemo and it worked (not a given) maybe 6-12 months.
He basically gave up at that point, and died on 22 March.

At no point in the whole journey did anyone talk about about stages of cancer, it might have been written in the notes - but not in a language which called it stage x.

Re the eating. Nagging the person with the diagnosis to eat (or cooking and trying to provide food they'd like) is just about the only thing you feel able to DO. So I can understand your DH nagging his dad, in the situation he is helpless to actually do anything else.

I've probably not helped but I'm not sure what else to say.

If you want to see him, and can go, I would. Even if he's got a while left it would be good to spend some time with him now?

[mslevine86]

I'm so sorry to hear of your FILs diagnosis, everyone is different but the posters above have given some very good advice. My mum had oesophageal cancer with mets in lungs and eventually brain we suspect. She went downhill very rapidly due to her being unable and afraid to swallow and if it was me I would try and encourage your DH that you should visit. He is probably like me in that I was in denial of it happening, or like my uncle in that he couldn't bear to see her poorly after seeing other family members go through the same. It would be good to spend time with him as it may sadly be quicker than the doctors think :(

[StealthPolarBear]

Just to mention this thread is from last Nov. Hopefully they have been out to visit by now.

[wrinkleseverywhere]

FWIW FIL was diagnosed with lung cancer 3yrs ago and died 12mths later. DH and I were given very little meaningful information at any stage. We knew much more about the parking situation at the hospital and how the consultant had enjoyed her holiday and how many tattoos one of the nurses had than we did about what treatment FIL was having and what the reason for the treatment was .
After a couple of months, I just accepted that that was how it was going to be and that it was really up to FIL and MIL to decide how they were going to play it. I read up a fair amount and also spoke a bit to a couple of friends who are oncology consultants. This meant that I could work out what the "giant red pills" were for example.
PIL were not willing to admit to themselves (or anyone) that it was a terminal diagnosis so I also thought a lot about the practical side of things for later stages - researched local hospices & spoke to a couple of them about what they could offer & when etc; looked in to when you could qualify for a blue badge; that sort of thing. I also asked a few friends if they wouldn't mind stepping in and having the DC after school or for an emergency sleepover if DH and I had to dash to see FIL and I gave a couple of people spare keys so that they could get into the house and get extra stuff for the children if need be.
Being kept at arm's length did mean that I could be quite blunt with MIL on occasion, e.g. just asking as we were doing the dishes one day when they were going to set up a bedroom downstairs. She was taken aback,
blustered that it wasn't necessary but texted me the next day to say she was going to do it later that week. I also tackled her about FIL's diet when he scarcely had an appetite and she was continuing to offer him their usual really healthy food whereas he needed as much calorie dense food as possible.
It was hard being kept so distant as we only saw them every 6-8 weeks and FIL noticeably went downhill between some of these visits and stabilised between others & we never knew which to expect. I think that they were doing it to protect DH but he would rather have been involved.
It must be even harder when it is a different country.