Terminal cancer without treatment

LegacyUser

I'm wondering if anyone has any advice or experience for dealing with the following situation.

Backstory: My Mother who was my best friend in the world passed away from complications after a brief battle with a very nasty incurable blood-bone cancer 2 years ago. She was only 54 and it was such a shock. I'm dealing with it okay now but it's been very hard for me to come to terms with as we were so, so close. She died from an infection after her defences were weakened by chemo.

A year later my uncle [age 49] on the other side of the family was diagnosed with the same cancer. He has had a very tough battle but he's still here. He's tried stem cells and more modern treatments along with chemo and it's going very well for him currently, but the cancer is terminal and the prognosis is 3 years from diagnosis at best. But seeing how good he is doing with the regular chemo, it brings some glimmer of hope that he'll get another few years.

As of two months ago, another family member [age 50] who I am very close to has been diagnosed with this same cancer. It is not hereditary. This is just some horrible coincidence.

This cancer is progressing extremely quickly based on regular bone marrow tests. The cancer cells have almost doubled in the space of the 2 months since diagnosis. From the offset, this family member has refused all treatment in favour of herbal teas and vitamins.

They do not believe in chemo and never did, which I have to accept. But I am finding it extremely hard to deal with the rejection of all treatments. I'm the kind of person who has zero faith in alternative medicines and while I know it is not my choice, I can't help but feel like it is some kind of slow suicide to reject treatments that could make this easier for the patient.

It isn't that the person has decided they want to die and get out of this situation. They have zero symptoms up to now, it's all internal, and they are working and living as normal. As of last week it's looking like it's probably too late now anyway to begin chemo and reverse any effects as it's gone too far. But they have no regrets, they stand by the anti-conventional treatments stance.

I don't think the person has accepted how grave their situation is. They seem to believe that the herbal teas will sort this out soon and are disappointed every time they see the blood work showing that the cancer has multiplied again. The doctors say that the alternative methods are making absolutely no difference whatsoever.

I'm watching my uncle get on with his life working hard as normal even though he's undergoing regular chemo. He looks great and is in good form.

I know this is selfish of me, as it is not my life to control, but after seeing how hard my mother fought and how she didn't get a good chance at it, it's very hard to watch someone else make no effort whatsoever to hinder the cancer.

Every week there are more horrible discoveries associated with this cancer as it progresses, and I can't help thinking that they are not necessary, that they could be put off for a long time at least with conventional treatment.

I don't understand why the family member in question is going for all of the painful bone marrow biopsies if they are not going to treat it in any way. Why not just go live your life now and forget all of the hassles of hospitals and everything associated to this cancer.

Today there are more tests and I'm sure in a few hours we'll have more horrible news [there are suspicions there is something on the brain now]. I expect this person will only live another 2 to 3 months max. They still appear to be perfectly healthy on the outside and I think because of this, they are finding it hard to accept what's going on internally. They want to talk to me about this constantly because I know a lot about the disease from my mam's experience, but I find it so hard to discuss it when it's being allowed to progress like this.

All I can focus on is the lack of treatment. I know it's incurable, but people can do several years with treatments which are far less painful than regular bone marrow biopsies, compared to a couple of months without treatment.

I fear this person will want chemotherapy when it's too late.

I have sat the person down and asked them to reconsider but was met with a very firm 'no'. They are placing all of their hopes on herbal medicines which have so far been shown by the doctors to have absolutely no effect on the cancer.

Has anyone watched someone they love reject chemo and fail before their eyes? I know I will get through this because I have to, but it feels like a nightmare waiting to hear who's next with some nasty terminal cancer.

Any words of experience much appreciated.

tenchi-fan

I'm not a psychologist but it sounds like denial.

Who would voluntarily leave their happy life to replace it with chemotherapy?

I think you should tell him to read about steve job's experience with alternative medicines: http://www.forbes.com/sites/alicegwalton/2011/10/24/steve-jobs-cancer-treatment-regrets/

fungun

Sorry I have no experience in this area but its hard to understand how anyone would react. The only insight I could offer is that I know people who have felt that chemo accelerated the end - although what I think they actually mean is that it made it more evident they were sick earlier. To be fair to the person involved, if they do not think chemo will help, then their choice to try to stay as seemingly-healthy as possible is their choice and theirs alone. I would imagine that the doctors are used to he typical responses and might know how best to deal with this or where is the line that you accept their decision?

As slight aside I wouldnt give a flying fuck if they said it wasnt hereditary; if 3 family members have had the same cancer Id be getting yourself checked out annually!

LegacyUser

Thanks for your replies.


techni-fan, I think you're right on the denial. I guess because this person isn't seeing any symptoms on the outside yet, they haven't fully accepted what's happening to them. They also think that because they're taking a different route to my late mother and my uncle, their outcome will be different.

The doctors did their bit in the beginning trying to talk my family member around, but they have now stopped suggesting chemo. I guess I just have to accept that chemo will not be playing a part here and I have to accept that this will all be over soon, it's just hard when the person is seemingly so healthy otherwise. But my mother was also until she started chemo, it was all very sudden.

fungun, I think this person saw my mother suffer so much while on chemo that it maybe put them off that route.

The cancer isn't hereditary or contagious. Everyone is baffled. The uncle is my aunt's husband on my dad's side of the family, no blood relation. The other family member is on my dad's side of the family, no blood relation to either of them. We have worked through it and none of them had anything in common, other than the fact that all three never smoked, drank or ate particularly unhealthily. I'd never even heard of this cancer when my mother was diagnosed and now I have 3 cases in my life.

And unfortunately there is no real way of getting tested for this. You don't test positive until you have it and once you have it, it's too late. There is no prevention or cure. Chemotherapy can slow up some of the effects and its rate of development but prognosis is still only 3 years with chemo. Compared to 3 to 6 months without.

CathyMoran

I know a bit too much about this myself - just over 5 years ago I was given less than 8% chance of still being here now (oesophageal cancer). I took the hardest conventional treatments I could have (I was on a clinical trial as my chances of survival were that small) and am still here, married and have a son and a daughter both born within the past 5 years.

One of my friends went down the complementary and mainstream route - he initially had a much greater chance of survival but is no longer here My mother in law was diagnosed with lung cancer over a year ago and is also still here.

I do think that you need a certain mindset to even get through the treatments - to say that they are hard is an understatement - I do not remember most of the chemo but my husband does and it still upsets him if it comes up and that is not even getting to the surgery...my husband carried me though the treatments when I did not have the strengh and I owe my life to him.

The fact that your relative saw how others suffered with treatment will obviously have affected them, they may not think that they can get through them and are living in denial. Unfortunatly the doctors can only try so many times.

What you could say is what they could do with the extra time that treatment could give them and remind them of all the good times your mother had in between treatment. There are so many things that can be done and time is so precious.

Hugs.

LegacyUser

Thanks so much for your reply, Cathy. It means a lot coming from someone with first-hand experience. It's wonderful that you are here to have a family now, and such a supportive husband.

I think you are right about needing a certain mind frame.

My mother had the best possible mind frame, always extremely positive and thankful for every day, and I think that my relative - after seeing even my tough mother not get through it - has lost their faith in conventional medicine.

My relative is not religious while my uncle has a strong deep faith and I think the religion is keeping him going, handing over his fears to a higher power.

We are awaiting further test results today but I'm coming to accept that this has probably already been left too late to be slowed down, and I have to accept that it was not my choice to make.

My relative is currently preoccupied with taking on a very long term, stressful project that under no circumstances will they be here to complete, but I guess that's another sign that they haven't accepted this yet. I just hope they don't have huge regrets on their death bed.

I said myself after my mother died that I would never have chemotherapy but now seeing this current case play out, I have a totally different attitude towards it and would do anything I could to buy more time because I'm better here and fighting it than being dead.