No biopsy or treatment for cancer

[WishIWasSomewhereElse]

My dad was diagnosed with bladder cancer and the same time they found kidney cancer (both primaries), in 2017. The bladder cancer was removed and has never returned, the kidney cancer required a radical nephrectomy and some Mets occurred over a year ago. He has been on Paz since then.

He's been quite ill which was attributed to Paz (diarrhoea and some vomiting, the diarrhoea so bad that he can't get to the loo in time and has been hospitalised due to dehydration several times). But it worked and the Mets shrunk at his last CT scan in September.

He went into hospital again a few weeks ago and they kept him for two weeks. They undertook several tests, firstly he tested positive for C Diff, then negative. He had another CT scan, which showed a lesion on his pancreas.

We saw the urology oncologist on Tuesday. He said that he'd referred him urgently to HPB oncology. He advised him to not restart Paz (was stopped in hospital) as the kidney Mets were stable and the new lesion was more urgent, and the Paz could complicate treatment. He was told he would need a needle biopsy under local anaesthetic to determine the type.

I asked if it could be a Met from the kidney, but apparently it doesn't look like one.

The oncologist phoned him yesterday. The HPB oncologist is refusing to see him, refusing to biopsy him and claiming there is no treatment they are willing to try.

I really don't understand this. How can they know whether radiotherapy would work if they won't even biopsy the lump?

Is there any way we can pursue this? We are really in the dark here.

To summarise - his oncologist is saying he has primary Pancreatic Cancer.

How old is your father? How’s his general health?

He is 76. He's had type 2 diabetes for years. He had stage 4 CKD before the nephrectomy, but recently his CKD has been downgraded to stage 3 and he's been discharged from the renal team as his kidney function has improved. He has COPD (but not that bad), has atrial fibrillation and had a TIA in 2018.

Do you have a McMillan nurse assigned to you? They can act as a useful go between.

I don't know if the hospital are right or wrong, but it sounds like in any event the reasons behind the diagnosis and decision have not been explained clearly to you and your father. If no help from the McMillan nurse contact PALS.

Oh god what an awful situation.
How good is your dad at sharing detailed information from these calls?
Can you ask your dad to give permission to discuss his medical care with next of kin directly given that you weren't able to be in what, in non-Covid times, would have been a physical meeting that you as a support could have attended?

(For ref, I am a cancer patient and have given permission to my doctors to discuss information that they have shared with me with my husband, via phone, as there have been points in my treatment when I was not in full capacity to absorb what they were telling me.)

I would want to have a convo with the oncologist and get right into the reasons for this decision. Is it a purely clinical decision or is it influenced by commissioning protocols and budgets given your father's age and state of health? Who has made this decision basically. Can you advocate for a second opinion?

Are they essentially saying that from this point forward they will provide only palliative care?

How are his kidney cancer team involved and what is their position?

@ClashCityRocker He has a cancer nurse, not sure if it's Macmillan, it may well be.

@Babamamananarama I am so sorry for you having to go through this . My mum is allowed to discuss it with doctors. I've been going with him to the appointments, they've allowed mum and either my sister or me in as well. It is his kidney oncologist who phoned him yesterday. We are meeting with him on Tuesday again, so will ask for the reasons. We already knew surgery wouldn't be possible due to the size of the surgery and the fact that it around or near blood vessels. His secretary phoned me yesterday and said I could ask these questions on Tuesday, but it's the fact that they're refusing to biopsy it that's most frustrating. I wish you all the best.

Sorry so to hear this.

I'm not sure if there's anything you can do to alter the outcome but I found this and maybe they might have some ideas:

www.pancreaticcancer.org.uk/support-for-you/specialist-nurse-support-line/

It maybe worth speaking to his GP and seeing if there's anything they could do, I know ours will phone the hospital and discuss with them and they may be able to get a clearer reason why. If you don't get anywhere and have the money I would also consider going for a private consultation, it may well not alter the options but at least you would know an expert had checked there were no viable options.

Thank you. Mum is going to try to call his GP tomorrow and see what they know. Will look at private options after the appointment on Tuesday if necessary.

Sorry you’re going through this.

To be fair, biopsy is not without risks either, and does not always give you definitive information - it’s not routine for renal masses (not sure if it’s routine for pancreatic lesions) I would certainly be asking for a more detailed explanation and it’s also worth asking if he’s eligible for any clinical trials.

@DazzlePaintedBattlePants thank you.

A bit of an update. Dad was contacted by his nurse (think it is Macmillan), who said that she was available to provide palliative care. She said he needs to contact his GP to ask for a palliative care review and for drugs, as if he gets ill at the weekend she would be able to come and administer them. This is slightly confusing as he's had a palliative care note on his medical records for a couple of years, but apparently he now needs to ask for drugs for palliative care.

He also apparently signed a DNR form in hospital, but doesn't remember this

@WishIWasSomewhereElse

To summarise - his oncologist is saying he has primary Pancreatic Cancer.

If pancreatic surgery is possible, it is a huge operation ( whipples procedure). Could it be that even if it was possible to have surgery your dad would not withstand such a big surgery with his COPD etc ? I'm sorry but if it's possible to treat by surgery then the prognosis is pretty poor. I think you need to ask for clarification on his prognosis. Are the drugs for end of life care ? I'm sorry you are going through this - it doesn't sound like things have been explained very well to you.

@Babyroobs yes I think the drugs are for end of life care (dad just said that the nurse said to ask his GP for drugs for palliative care and she would be able to come and administer them when necessary).

I don't think he would be able to manage surgery, the oncologist explained this, but said radiotherapy may be possible, but the HPB team are refusing to see him, or offer any treatment.

I do think his oncologist was pondering telling us that even radiotherapy as dad's performance level is low, but said it was the HPB's team call.

My sister keeps saying it is good as it has been caught early, so she's told him and us that he has at least three years...the nurse yesterday asked if he wanted to know how long he had left, so I'm guessing that Dsis is being overly optimistic, but hope she's right.

[quote WishIWasSomewhereElse]@Babyroobs yes I think the drugs are for end of life care (dad just said that the nurse said to ask his GP for drugs for palliative care and she would be able to come and administer them when necessary).

I don't think he would be able to manage surgery, the oncologist explained this, but said radiotherapy may be possible, but the HPB team are refusing to see him, or offer any treatment.

I do think his oncologist was pondering telling us that even radiotherapy as dad's performance level is low, but said it was the HPB's team call.

My sister keeps saying it is good as it has been caught early, so she's told him and us that he has at least three years...the nurse yesterday asked if he wanted to know how long he had left, so I'm guessing that Dsis is being overly optimistic, but hope she's right.[/quote]
I've never heard of Radiotherapy being given for pancreatic cancer to be honest but quite a few pancreatic cancer patients that I come across in my job are offered chemotherapy, however they may feel he's not suitable to receive that in view of his general health.
Yes I think your sister is being very optimistic to be honest. It's good though that your dad has a good palliative care Nurse as some patients really seem to struggle even getting that support in the community. Your dad's nurse sounds supportive and hopefully will go through options with him. Maybe he has made decisions/ end of life care plan, but is protecting you maybe?

@Babyroobs Thank you. Yes his nurse is lovely. No I don't think he has made plans, as he doesn't really take things in, I don't think he would try to protect us, but seemed to think he was going to have a colostomy bag and keeps telling people this, so I don't think he really listens.

It probably was chemotherapy that was being considered. The oncologist said he probably wouldn't be fit enough to undergo chemo, so I just assumed he meant radiotherapy - to be honest the oncologist said that we'd get a better idea of treatment options when we saw the HPB oncologist, but then she refused to see him, so I'm blindly guessing what his options are, IYSWIM?

He was asked about his diabetes, which had been controlled brilliantly up till last week (usually 6 or 7), but the last few days it has suddenly jumped up to 15, I fear this may be related (but know nothing about it).

I am hoping for some miracle that it is a kidney met, as that would mean the Paz may work, but the oncologist thinks it's unlikely.

I feel worried for mum, I don't know how she'll cope losing her son and husband in one year.

Thanks again

[quote WishIWasSomewhereElse]@Babyroobs Thank you. Yes his nurse is lovely. No I don't think he has made plans, as he doesn't really take things in, I don't think he would try to protect us, but seemed to think he was going to have a colostomy bag and keeps telling people this, so I don't think he really listens.

It probably was chemotherapy that was being considered. The oncologist said he probably wouldn't be fit enough to undergo chemo, so I just assumed he meant radiotherapy - to be honest the oncologist said that we'd get a better idea of treatment options when we saw the HPB oncologist, but then she refused to see him, so I'm blindly guessing what his options are, IYSWIM?

He was asked about his diabetes, which had been controlled brilliantly up till last week (usually 6 or 7), but the last few days it has suddenly jumped up to 15, I fear this may be related (but know nothing about it).

I am hoping for some miracle that it is a kidney met, as that would mean the Paz may work, but the oncologist thinks it's unlikely.

I feel worried for mum, I don't know how she'll cope losing her son and husband in one year.

Thanks again [/quote]
Yes the raised blood sugars are likely to be related to the Pancreatic cancer as it may mean the pancreas isn't producing enough insulin.

It's really unfortunate to have two different primary cancers in such a short space of time, your dad has been really unlucky.

If you need any support or just a Nurse to talk to then there is always the Macmillan helpline, or any advice on financial help/ benefits, or if your mum just needs someone to offload to that isn't family they have people she can talk to.

I really hope you all get the support you need.

I'm really sorry you're in this situation, but it's important to focus on the fact that you've got an appt on Tuesday, and have very specific questions ready.

In the gentlest way possible, I think your sister is way off base with her argument, given everything you've written here.

If his pancreatic cancer is as you state, and given that you've already had an awful loss this year, I think it would be helpful to get a time line on Tuesday.

I understand not wanting to know, but if your sister is saying 3 years, and actually it's 3 months, or 3 weeks (I'm not saying it is, just an example), your mum is going to have an awful shock.

My experience has coloured my view - we knew my dad was similarly unwell, but because of the actions of one doctor (who was actually let go because of this), we did not have a clue about his actually expectations. Imvho, it's better to know.

I'm so sorry about your brother

OP

I agree with @Iborgia. If it is pancreatic cancer, best to ask about timescales. I lost a close friend to it in 2018. She had a very good last 6 months, chiefly because she knew it was her last 6 months (obv I hope for your dad it will be longer).

Thank you all

We saw the oncologist today. He ruled out a biopsy, due to the risk of infection and bleeding.

He gave a timeframe of between 6 - 9 months, but said to my sister and I that considering dad's rapidly decreasing energy/performance levels, he fears it may be less.

We had to leave poor dad there, crying, as he was very breathless, so the oncologist is going to admit him. He said that PC can cause blood clots, so he wanted to rule that out as being the cause of breathlessness. The nurse thought it unlikely as his SATs didn't change when moving, but still it needs to be ruled out.
Bit of a nightmare as mum had their second Covid jabs booked at home for this morning, but the GP turned up when we were at hospital. It means dad will likely have more than 12 weeks between his first and second, but the oncologist said his breathing is more an issue.

I'm so sorry for the current situation, but really glad you've got a real and legal answer.

Again, I'm going to sound like a horrible person, but being admitted with breathing difficulties, I'd be expecting problems.

Hope your family can get through this in a peaceful, and supportive way.

So sorry to read this op. What a terrible time of stress for you all. My Dad died from Pancreatic Cancer aged 50, so I can empathise with you.

@BluePeterVag I'm so sorry, how awfully young your dad was

@lborgia You don't sound horrible at all, I'd rather know the truth, thank you x