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Father had 3rd recurrence. Preparing for the worst frankly.

VikingShips
Posts: 5
Joined: Aug 2014

Hello,

My father has been dealing with CRC for about four years now, His treatment started in January 11, after diagnosis right before Solstice/X-Mas '10 (Months after I graduated college, go figure)

He had a part of his colon removed, and six months Chemo. Sorry I do not know specifics of his case. It was already in his lymph nodes.

In late 2012 he had a recurrence. In the liver. The chemo was very succesful and made a non-resectable case resectable. Again, I was hopeful.

This time I think it is a whole lot worse. I don't know what the CT scan specifically showed, but it appears to be in multiple places, liver, possibly colon, possibly lungs. PET scan after labor day, along with a colonoscopy. The way everyone is acting this week it is like we are coming up on an execution date (Doing things we never do all together for ex. going to the beach on a weekday)

I am scared that this is it, and I don't know what to do.

I want him to get a second opinion, I've wanted this for years. My parent's won't do it. They trust the Onc. I think part of this is financial we are as a family, quite frankly broke and heavily in debt at this point. My father can't work, my mother was laid off, and I can only find part time work myself am buried in student loans.

Dana-Farber is 40 minutes away, but I fear anything they would do might A. Be too late, B. Be too expensive for us to *literally* afford.

I am really afraid my time with him is running out, I don't know if I can be strong enough to deal with supporting my mother and him. My sister is in school, and my other sister is off in her own life. At least she has a baby and a husband for support. I have nothing besides my parents really. As was said in Star Wars "Most of his friends are gone" and thousands of miles away.

I also feel guilty for pursuing my own goals and ambitions at this point. I am in the midst of a nation wide job search, and he doesn't want me to put it on hold (I am 26 with a masters degree, rapidly approaching the age when I am weird for not being on my own yet) But how can I not put it on hold? Today at work I forgot about 3 things I was supposed to do, I just can't focus. I was already fighting depression, this is not helping.

sdp's picture
sdp
Posts: 151
Joined: Jan 2012

Why is it that the recurrence is noticed after so much spread 

did he not monitor the cancer markers and get ct and other scans done every three months .?

 

i have had three recurrences in liver till now but caught within two months - either thru ct scans or cancer marker levels in blood

 

the delay in catching it leads to increased metastasis - 

anyway in case of increased spread chemo and resection is probably a good hope

then tumours probably can be dealt with if localised to liver and lungs - that is what most if the survivors have already dealt with

abd chances of dealing with limited metastasis is just lungs or liver are much better than fur her spread.

VikingShips
Posts: 5
Joined: Aug 2014

He had a three month scan the middle of May. It was clear.

janderson1964's picture
janderson1964
Posts: 1696
Joined: Oct 2011

It might not be all cancer. Although very discouraging it is not a death sentance. I was diagnosed stage IV and had 3 recurrences since then over the course of 9 years. Each recurrence is a little harder to accept emotionally and the fight gets harder each time but I am still here fighting with a lot of hope and a VERY active life style.

sdp's picture
sdp
Posts: 151
Joined: Jan 2012

Normally if the cancer markers are a good indication - then one would have monthly blood tests with markers done and if the same were elevated to a high extent then it is better to get a ct or any scan done to detect the spread 

that way it is caught a bit earlier and can be dealt with more efficiently 

I normally maintain a reading of all my cancer marker test results to look for trends etc - this helps a bit in early warnings 

annalexandria's picture
annalexandria
Posts: 2271
Joined: Oct 2011

I'm really sorry that your family is going through this.  It's a hellish experience for all involved.

I think a 2nd opinion is always a good idea, but ultimately this has to be your dad's call.  I will say that going through the experience is very stressful, and if he trusts the doc he already has, he may not be willing to do something that will possibly add to the anxiety.

And the sad reality is that it may be that his present doctor has taken just the right steps, and the cancer is still turning out to be less responsive than hoped.  Even with the very best care in the world, this happens all too often.  So don't beat yourself up too much if he doesn't take the route of getting a 2nd opinion.

As for your plans, as a mom of young adults myself, I would say go for it!  I never want my kids to put their lives on hold for me, and I'm sure your dad feels the same way.  If he's like me, one thing that will make him feel better about this situation is to see you moving ahead with your own life.

But I also understand how overwhelmed you must feel.  Pls feel free to come and talk to us anytime.  We have all been there in one way or another (I myself have had stage 4 cancer and also been a caregiver to a sister who died),   We get it.

Big hugs~Ann Alexandria

annalexandria's picture
annalexandria
Posts: 2271
Joined: Oct 2011

with regards to the scan...there are times when the cancer can grow incredibly fast in a matter of months.  Your dad isn't the first by any means to have significant growth even with careful scanning.  

VikingShips
Posts: 5
Joined: Aug 2014

Thank you for the kind responses...........

I suppose I am just having a much harder time dealing with this reality than I was before. I just need to talk to people who "get" it!

janderson1964's picture
janderson1964
Posts: 1696
Joined: Oct 2011

We get it because we have been there. It's not a fun place to be but it is easier to talk to otheres who have been there.

UncleBuddy
Posts: 669
Joined: Aug 2013

I know it's hard for you to move on with your life, but you are still here and have a bright future ahead of you. Your dad doesn't want you to put your life on hold, as a parent myself, I would do the same thing as him. We want the best for our kids. Go forward and make him proud.

As far as his care, unfortunately, it's his decision as to whether to get a 2nd opinion. You can suggest it, but the decision is his. I know it's hard being a family member and having no control over what is happening. BTW, you are not weird for not being on your own. It's very expensive to live on your own. My daughter is 25 and is still living home, but she is working on finding an apartment. Her new job will make it more affordable. 

If you're fighting depression, please get help. This kind of situation is very stressful!

Lin

annalexandria's picture
annalexandria
Posts: 2271
Joined: Oct 2011

and still at home.  It's way too expensive to live solo in our city, so it's not uncommon at all.  Nothing to feel funny about IMO!

VikingShips
Posts: 5
Joined: Aug 2014

"As far as his care, unfortunately, it's his decision as to whether to get a 2nd opinion. You can suggest it, but the decision is his. I know it's hard being a family member and having no control over what is happening."

It is probably my feelings of powerlessness.

I really don't know how I can lose him, it seems unfathomable to me, but at the same time rushing towards me like a train.

Nothing no one else hasn't experienced. It just makes me so sad and at the same time so bitter about how unfair it all is. I am also a big "what if" person. So those will always, always bother me. 

What saddens me the most is that my 2 year old niece might very well not remember, or only have vague memories of her "bampi" that is just such an awesome guy that is better with kids than anyone I know.

I suppose if I can draw a positive, there is now a reason for me to be regularly tested, and tested early. And we have had a lot of time together the past summer, time I have never appreciated until now.

Even a family accquantaince (that had Lymphoma as a older teen, and is now in his early 20s) that works at a coffee shop we frequent asks about him. My father told him
"well the scan wasn't good, so all I want from you is to finish school (Pharmacy) and get to work!"

That's the kind of guy he is Smile

UncleBuddy
Posts: 669
Joined: Aug 2013

I totally get that feeling of powerlessness. I have tried time and time again to get my brother to change his diet and exercise, but he is set in his ways and has no intention of eating anything that he doesn't like. I don't really know if that would even help, but if it helps keep him around a little longer, why not try it? He is intellectually disabled and has a mind of his own. I can't force him to do what I want. He feels he wants to live the rest of his life and enjoy it! I can't argue with that! We just need to be there for them and spend as much time with them as we can. My brother is stage 4 and has a lot of other health issues, but that doesn't mean I won't hope for a cure! Anything is possible!

Good luck!

Please make sure you take care of yourself and live your life! That's what your dad wants you to do. Smile

Lin

VikingShips
Posts: 5
Joined: Aug 2014

Thank you everyone for the kind words

Maybe we will get a miracle? And by that I mean get a few more years with him. That's all I want at this point. More time.

annalexandria's picture
annalexandria
Posts: 2271
Joined: Oct 2011

We have several long-term stage 4 survivors on this forum, some who have are still kicking at 10+ years.

Even with significant spread, some people respond really well to one or another of the various chemos, and can get years added on, perhaps even a cure if surgery becomes possible.

So don't lose hope just yet.

Helen321's picture
Helen321
Posts: 833
Joined: May 2012

Call the hospital.  Our local hospital has financial aid and offers some free services.  With their income, your father might qualify for free services.  Also apply to medicaid.  I wish I had an answer for the rest.    I have a 26 year old, I don't wish this on any of you, it's a heavy burden to carry.  Just know that your love is really all your parents ever wanted from you and they get that.  

Helen321's picture
Helen321
Posts: 833
Joined: May 2012

PS my oldest is 26 and lives at home.  Who cares what other people think the right age for moving out is.  Do what is best for you in your life, you only get one.

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