Things "WE" Don't Talk About With Most

You write from the heart as if I can hear you say the words outloud.  I admire you and your strength over cancer.  I pray for you every day and did cry yesterday (I aint gonna lie).  So much love to you!

I have had a few complaints in my time, and thats fine. I speak my mind, hopefully with kindness but firmness. 

You speak your mind, and I appreciate that.  

I am still heartsick that you have to suffer so. After watching your husband fight and pass, it just doesn't seem fair. It isn't fair. But we all know, life isn't fair. 

You have my support whatever your decision. 

Tru

I fully understand where you're coming from.  When my CEA spiked to 52.6 in October, I started going through the decision process of whether I would go back on chemo if something was found.  I know it was premature to think down that path even though I haven't gone through the extra scans.  I was leaning on to the decision not to go back on chemo.  As you said, this is a very individual decision.  And no one should be passing judgement on what a particular person decides.  There are the fortunate ones who sail through chemo with no side effects.  And there are those that are not fortunate where they have severe side effects or even worse an allergic reaction.  I fell into the spot beyond average towards having more severe side effects.  The memory of how horrible I was feeling is enough for me not to want to go back on it again.  And this time around, I don't really have anyone that is an SO to help me through this.

This topic is also why I hate with a passion the description of us being cancer warriors or there is a battle.  Because the connotation of someone who has just had enough and doesn't want poor quality of life as being a loser or lost the battle, is not fair.

Talking about our deaths has never been very popular here. I can understand why to an extent, but everyone dies. We just happen to have had a wakeup call which is something I feel wasn't all bad. 

It's a personal decision many of us will face sooner or later. I'll probably succumb to it at some point as well. That being said, I'm not sure if I am taking your comment out of context. "NO ONE could give me any certainty about the odds. No matter how many medical articles, latest research, patient accounts..etc that I read, there were no guarantees or certainties from the doctors guiding my care. They are learning as they go, same as we unfortunately have to." 
Did you expect to have certainty or a guarantee? Personally I'd be very cautious of any doctor who did give me a guarantee unless they said that someday I will die. 

The only time I was given a time limit or expiration date was when I was first dx'd in Feb 2004. My onc at the time gave me less than 1 year. I immediately got a second opinion and was told by a doctor at MSKCC that "we can work with this" which is all I needed to hear. So in Feb 2020, it will be 16 years that I've been taking chemo. No NED, No DEAD. While I'm not as active as I used to be, I am 62 and the disease takes a lot out of me. Still, I manage to kayak in the nice weather. 

IF I had to start all over with the surgeries etc right now, I'd have a tough time deciding if I would go through all of it again. Time will tell, I don't care for projecting far into the future.

Only we know when we've had enough. I just wanted to share my experience with others on here because I think it's important to get various views.
Be well,
phil

I was diagnosed just about 10 years ago with a rectal tumor.  I was offered radiation and chemo to shrink it before surgery to try to save from having a colostomy.  I chose surgery.  My doctor really wanted me to consider chemo after surgery, but I opted not to...after all I was 62 years old and my life situation was such that I didn't want to become dependent on others to help me long term, plus I had no health insurance at the time.  Now, 10 years later I am still here.

3 years after my diagnosis my sister was diagnosed with cancer of the uterus, which had spread to her lungs.  She had surgery to remove uterus, but there was no surgery for the lungs.  She was uncertain about chemo but without it there was not much time left.  I told her she could give it a try and if it proved too much for her she could stop.  That was what she opted for.  About 18 months later she died.  While those 18 months were not always easy, she got to see her last grandchild born and have a nice vacation at the beach.

The adage about not judging others until you walk a mile in their shoes is so apt here.  Each of us has life circumstances that impact our decisions.  All we can hope for is that each of us makes the best possible choice for our own self, without regret.

May each of us make the best of our time here on earth, regardless of how long that is.

Hugs,

Marie who loves kitties

The sub topic of the medical system is a very heated, emotional, and controversial topic.  I won't go too much into this as I don't want to derail this thread for mojo as this is her thread.

I've always maintained that it is absolutely criminal for health insurance companies to be publically traded on the stock market.  To think there is any clear separation between coverage decisions and stock holder profits is foolish.  What this means is coverage decisions are often made based on what will maximize profits and not what is best for the patient even factoring in managing costs.

At one point, I was considering going into med school.  I've taken a class required by pre med students.  From my own myopic view of how doctors are groomed in the beginning, there is a lot to be desired.  This also fuels my disdain for many doctors along with my time being a first responder dropping patients off at the ER.

With all that said, there are some geniunely good doctors out there.  My primary care physician did not screw around when I presented with problems and a positive FOBT.  He immeidately ordered a GI specialist follow up.  My GI doctor didn't screwe around and I had a colonoscopy at the age of 42.  When a 3cm mass was found, he didn't screw around and immediately ordered a STAT CT scan which I had the next day along with locating a CRC surgeon who would see me immediately.  The CRC surgeon I saw two days after my colonoscopy didn't screw around and scheduled me in for surgery 7 days after my colonoscopy.  It would have been sooner had Christmas and the weekend didn't fall in between.  He also put sent me to a colleague of his who is a liver specialist due to two lesions found from the CT scan.  I saw this doctor the day before my surgery and he postponed his vacation trip of which he was going to leave the day of my surgery to be in the OR to biopsy the lesions and if necessary do a liver resection.  Other than my general practitioner, none of the other doctors have had any history with me yet moved mountains to make sure I was taken care of.  My current oncologist has been great.  When I went to him for a second opinion, he gave me his cell number to contact him if I had any questions or concerns.  This was at our first consultation and again no prior history with him.

As to the big pharma and all the negative feelings towards them, much of this needs to be tempered and taken into context.  There is a member on another colon cancer forum who was working in the pharma industry.  His wife died from colon cancer.  He was on the boards providing both his expertise as a drug professional and also needing support from all of us who know all too well his situation.

And I bring this person up as a distinct talking point related to big pharma.  Tom Marsilje.  Here is a man who worked as a cancer drug researcher/developer for Novartis.  On the day the drug he was developing for lung cancer was approved by the FDA, he went in for a colonoscopy and was diagnosed with colon cancer.  He started off as stage 3 and ended up having a recurrence.  He moved to being an activist for us and put up a blog about his cancer journey along with providing information about current treatments and the promise of future treatments such as immunotherarpy.  He was able to put complex information into a way even a layperson could understand.  He helped develop a clinical trial tool with another person who is active in two colon cancer support forums so people can more easily locate trials that could be beneficial for their situation.  He did this because he said even with his expertise he found sifting through the current trials website to be daunting.  When he passed, it was a huge punch in the gut for all of us.  He was optimistic to the end and never let up in presenting himself as a strong advocate figure for all of us in this community.  Those of us on Colontown mourned his loss for days/weeks/months.  Even to this day he is commemorated on Colontown.  I bring Tom up as an example of someone who worked in big pharma, who suffered from the same disease we all have, and still found the strength to continue to help contribute to the greater good.  I suspect there are other Toms out there in the big pharma world; although there will never be another Tom.

Here is his blog if anyone is interested in reading his legacy:

https://adventuresinlivingterminallyoptimistic.com/

 ETA: Tom was also interviewed for the PBS documentary on cancer called the Emperor of All Maladies.

abrub said:

Lots of good points here

And the decisions are very individual.  After my Folfox+Avastin chemo in 2008, I swore I'd never do chemo again. My family knew that quality over quantity was how I wanted to live (and still do.)  However, a few months ago, my cancer came back with a vengeance and I agreed to try Folfiri+Avastin, which I am tolerating extremely well.  And it looks like I'll be on chemo for life; shortly dropping the irnintocan, but staying on 5FU + Avastin after that.  Breaks will allow me to continue to travel, and at the moment, my life is pretty normal, and I have no limits on activities (except when hooked up to the pump).  At this point, it's an inconvenience.

However, if quality of life is diminishing because of chemo, I'll reconsider.  I want to live, not merely exist.  My doctors are all on board with me.

Others choose living as long as possible.  You have to make the decision that is right for you and your family.

Thanks for bringing this to the table.

Alice

You got a recurrence 11 years later? I am so sorry.