Considering no Treatment

[Madsnhunt]

Wondering if anyone on here has considered or has  refused treatment.

In the past year I’ve had an Anal Cancer diagnosis, gone through radiation and chemo where I had to relocate to the city for the 7 week treatment away from family and friends and needing to take the time off work.  My follow up appointment showed the cancer had spread away from the treatment site; 6 months later I had to have major surgery and a permanent stoma to cut out the cancer which has caused a drop in quality of life and requires further surgery to refashion.

Not even 6 months later they’ve found cancer in the lymph nodes in my neck and a mass at the base of my tongue.  I will have a surgical biopsy next week to see if it is a metastatic or a new primary.  Either way the oncologist wants chemo at best, radiation at worst.

I had horrific burns last time and didn’t tolerate the chemo.  After three diagnosis in a 12 month period I feel like we’re just playing medical whack-a-mole now.  I’ve discussed not moving forward with no treatment this time which hasn’t been met with great acceptance by the treatment team.  They throw “curative” around but they’ve said that the last two times and now I’m looking at quality of life over quantity. I haven’t had a chance to even recover from each bout before I’m hit with the next diagnosis. I can’t help but feel even if I do proceed with treatment, it’ll be back within a year somewhere else bring a fresh new hell.

To be clear, I am speaking with a cancer psych who is the only one who gets where I’m coming from.  This isn’t something I’ve taken lightly and have been preparing for this since my first rads onc appointment last year when he told me that due to the advanced stage of my cancer I was at a high risk of it popping up somewhere else.

Has anyone else been here and considered giving more treatment a pass?

[PeterK]

Hi Madsnhunt

i was diagnosed with S1 esophageal cancer in late 2012 in early 2012 had a radiation therapy chemo and then a huge operation that ha me off work for 3.5 months

Cancer free in remission till June 2019 ct Shan then showed cancer to top of right lung following this a Pet Scan showed cancer had spread to  6 other body parts

Treatment was chemo only as body parts that had previous radiation treatment could no longer get further radiation

I am now waiting on Pet Scan 27/1 to see how this last lot of treatment went ? ? 

im 61 have a 20!year old son and a 22 year old daughter married 22 years to a fabulous woman

i to have thought your same thoughts recently and as my remission periods are decreasing because of the spread of the cancer I did ask my oncologist how long do you think I have go, his answer was expected how long is a piece of string, everyone responds differently to treatment

so I then asked at the start of my 3 round of chemo if I did not continue with chemo how long do you think I would have, his response was maybe 2 months 

The 3rd lot of chemo had me in bed with severe  fatigue but this last round was not that bad

I think quality of life is so very important over quantity when quality of life is deminished through ongoing harsh draining treatment  to other limited positive outcomes then you like many ask the same question 

For me at the moment I’m going to fight like hell stay as positive as I can, set goals and kick as many as I can, talk to family and supportive friends and service providers take one day at a time and always take time to smell the roses and live the life I/we have as best as I possibly can.

Im sure my body and my heart will tell me when Enough is enough and as long as I’m pain free that will be my primary objective and concern.

Sorry for the ramble but it’s important to share thoughts and feelings no matter how hard

Talk  to your family and Dr and express your wishes and desires but make informed decisions that you are happy with, its not going to be easy but I’m sure a BUTRON will be lifted once you have made a decision

I wish you all the very best for the future and my thoughts and prayers go out to you stay strong be strong stay safe and remember your loved emencley.

Kind Regards & Best Wishes Always For Today and Every Day

Big hugs if that’s appropriate Peter 

[Madsnhunt]

Thanks for your response.

I’ve had all the tests and biopsies, and it is metastatic anal cancer ; PET Scan showed it was in nodes in both my neck and stomach.

living regionally I’m struggling with not only the lack of continuity of care, but the random fly in and out oncologists who work  off notes.  I have a great MDT - I just don’t see them very often.  I feel like a box being ticked. I’m still suffering from my last bout of chemo and am not keen on repeating this. At the moment I’m trying to get them to design a “wait and see” plan but getting any data out of them is like pulling hens teeth. I have my next appt this week so I’ll see how it goes and if the next rotating oncologist listens to me and can answer my questions.

M

[Colin81]

Hi Madsnhunt,

I'm sorry to hear about your diagnosis, living regionally must make it very difficult for you and your loved ones, I have always lived in Sydney near to the clinicians and hospitals and it was difficult enough for me.

I had a different experience but went through the the thought processes you are having now. My wife and I put into place a lot of the things needed for when I was gone but I considered stopping treatment but decided that it would only happen if I was too frail/ill to continue.

My first one (cancer) was NHL in the bowel, 6 doses of chemo, very ill could not work for 2.5 years had further chemo (4) two years later.

Second one (CLL) was 6 years further on, I was given a 'terminal' diagnosis as they indicated I had a tumor (stomach) and bowel cancer. Fortunately they were wrong on that part, I requested a transfer back to my original medical staff at another hospital where they confirmed CLL but nothing else. This subsequently progressed to stage 4, schedule for chemo (6) got to 4 but wanted to stop, very ill, Dr's convinced me to do one more which I did, another 6 months off work.

Third one, I never felt that I was 'well' after the CLL and 18 months later was given another terminal diagnosis (12 mths to live without treatment) I had MDS. The treatment of 14 doses per month would cease if they felt it was not working and I would die. Very fortunate to be accepted onto a bone marrow stem cell transplant system but had to cease the current treatment which wasn't great for me as it took a number of months for the transplant to be fully arranged, it was successful, months in hospital lots of GVHD complications, very difficult process, another year off work, still have 'legacy' issues but worth it in the end.

I did think of stopping treatment several times and of course other more drastic measures but I just could not give up, I had to see it to the end.

I do not judge you but I implore to fully discuss this with your medicos and your phycologist (if you don't have one get referred to one). Your mindset is never the same after a cancer diagnosis, we need all the assistance we can get. I am finding it difficult to get out in a few paragraphs what I went through over an 18 year period but I hope you can find the strength to continue on with your treatment, open up to your medicos on how you feel, they are dealing with people like us every day. Discuss alternatives with them.

Write down all your questions, use this list to remind you to get the answers you need, be persistent, this is your life their dealing with, they may not be the answers you want but unless you know how can you make the 'right' choices for you.

My thoughts are with you.

Colin.

[OzStu]

Hi.

I can understand where your coming from.  But,  this new cancer in your neck may not be metastasized from your anal cancer, even if it is the same type.   If your anal cancer was HPV positive,  or P16 positive, it mean's it came from having had the HPV virus.  Your oral cavity could have been infected with HPV.  The cancer in your neck has most likely spread from a small, maybe even unseeable cancer in your mouth or throat somewhere.  This is the case with my cancer.  They never found the primary,  but they hit the whole area with radiation and I'm one year out from treatment and clear.  I have no sever side affects from the radiation at this time, although I will admit that the treatment was tough,  at least the last couple of weeks of it and the couple of weeks just after.   This is most likely and new cancer,  from the same cause.

You may very well go through chemo and radiation treatment for the head and neck,  and recover like me with little in the way of side affects, and have no more cancer to treat.  And by then  you will have recovered a lot more from your previous surgeries and you'll be glad you persevered.   Choice is yours of course, but if I were you I wouldn't be throwing in the towel yet.   BTW,  my neighbor,  and old gay guy,  was going through chemo and radiation for anal cancer about the same time as I was going for head and neck cancer.  He was burned up bad, and finding it difficult to walk, sit,  or get comfy sleeping.   But now hes getting around like he never had anything wrong with him.  His had spread too, to somewhere in his guts,  and he had some surgery.   But he's back to his old self and life is worth living again.    If you give up while there is still hope,  you'll be like the suicide guy who jumps from a really, really tall building.  Time will pass, and you'll be at a point where there is no hope anymore, then you will probably live out the rest of your days wishing you had of persevered and maybe beaten it.   Just like I am sure the guy who jumps from a tall building regrets it as soon as his feet leave the ledge......and wishes he didn't jump as he falls to his death.   Fight while there is a chance......give up when there is no chance.   

[Loracdraw]

Hi,

I have decided not to have radiation on my neck. We do have choices.  

   My lymph nodes are taken out and I have opted for a 12 month 🎯 'target' therapy.  My cancer is stage 3 melanoma cancer and they can't find my primary.

I now have THC and CBT oil by prescription, here in SA, it's marvelous as I'm sick of fentanyl, Endone and Oxy, I take none of that now only cannabis oil, this makes me eat, sleep and enjoy life.             Thankyou for your post 🙏🌷

[PeterK]

Hi Lauracdraw

It was good to read your comments and to hear  that THC & CBD oil have helped you in your pain relief and in achieving a better sleep pattern as well.

I have asked my oncologist about the very same products but he is currently hesitant about me using these at this stage, so I am researching at the moment, from what I have seen there are a lot of benefits in the use of both of these products.

I’m currently on 60mg of OxyContin and 50mg of Lypralin twice a day which are slow release pain killers and I also have Hydromorphone in 4mg fast release pain killers for when the pain breaks through but I try Not To Use these, and on a prescribed sleeping pill as well but still struggle most nights with sleeping, so I think I need to push a little harder with my Dr and see what develops.

I wish you all the very best in your journey and for positive results, stay strong be strong and set and kick goals.

Kind Regards & Best Wishes 🆗

Peter