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Stage 4 Diagnosis at 40 - Help!

Wadsdan
Posts: 8
Joined: Feb 2021

Hi all,

 

First shot at this sort of thing, so my apologies in advance if i am too wordy, or the opposite dont give enough info. I believe this will be a good place for me so worth a shot

 

I was diagnosed , completley out of the blue with stage IV colon cancer in Dec of 2019 - the past year and a bit has been for lack of a better word the biggest rollercoaster one could image, i bet most of you understand however.

 

I think the biggest impact for me initally was for my wife of 17 years, and our 5 young kids. Although of course I want ( and plan ) to fight and stick around , the mere thought of not being here for our 5 precious kids get's me every single time - and were we go again witht the tears as I write this.

 

Medically, a bit of a background - i had a wonderful ER doc who "unofficially/offically" diagnosed me, as I was in the ER ( forced by my wise wife ) for a nuisance cramp in my side that persisted for a couple days. Long story short there, they saw the cancer on my liver , but knew it wasnt primary liver cancer - good/bad news I was told which was hard to process to say the least.

 

A number of tests and procedures later the diagnoses was confirmed a week later ( very thankful for the speed at which they moved ) was confirmed by a colonscopy where the original tumor was found, and then CT which confirmed the liver METS ( and suspected lung METS )

 

I did 6 months of FOLFOX initially, which thankfully I tolerated fairly well, and had a "wonderful" response my oncologist said.

Surgery was on the table, then off the table, then came back on again - which happened in the fall of 2020, where I had susccesfull liver resection surgery to remove 6 tumors - praise the Lord the patholgy came back with clean margins, which I think shocked everyone.

My liver surgeon who was absoltuley wonderful, had planned to do my colon resection at the same time as it was on the right side in close proximity - however she decided not to, we believe God granted her wisdom , she instead wanted to do a follow up colonscopy. That colonscopy revealed mistakes, not a mistaken diagnosis but the general surgeon who did the first wrong was incorrect and my tumor is left sided not right sided, also from the biopsy the new general surgeon took , it revelaed no cancer found in that original tumor ( we were so thankful and felt blessed but then again so worried about the lung possibility, etc )

It's a fear of mine for some reason regarding the lungs, so it really brings forward a fear response - as of now, we are in "wait and watch mode" my oncologist has told us. There was 1 spot that was missed during surgery ( too small to take ) that has grown some, RFA ablation is planned to take care of that.

 

Anyways, again apologies for the wordiness- its probably too much info, but im hoping maybe someone is able to identify with my story. We have a strong faith and trust in Jesus, but frig im still human so the fears and worries are defnatley hard to deal with someones.

 

Thanks for listening ( reading )

Dan

 

Trubrit's picture
Trubrit
Posts: 5427
Joined: Jan 2013

And please don't worry about anything your write - well, within reason.  Lots of infor is good, to help us decide how we can each help.  What I may help you with will be different that what another member will, and that all adds up to a good expreience for you. So yeah, lots of good information in your post, so don't be worrying about it. 

You have already gone through the good old chemo, and I'm happy to hear you handled that well enough. 

What I personally related to was your fears over leaving your family, especially your children.  That was my biggest concern when I was first diagnosed and going through chemo. I would be OK during the day, keeping dark thoughts at bay, but at night there was no stopping the fear. Even though my boys were in their late teens, I still did not want to leave them. I figured if I could just live to see them meet their soul mates and have soeone to love them as much as I did.  

In the end I turned to meditation and guided imagery. It was nothing short of miraculous for me, at least for helping me put those dark thoughts in their place and getting some much needed sleep. 

My case is sgnificantly different than yours, but I know others here can relate and share their experience. 

Again, welcome. We can travel this road with you, and help you along the way. 

Tru

worriedson714's picture
worriedson714
Posts: 257
Joined: Dec 2019

                       So I get a little confused so there is no cancer in your colon then ? Your story kind of reminds me of my dad's who has stage 3 or maybe 4 rectal cancer . My dad was diagnosed now 2 years ago first the doctor who did the colonscopy told us it was to late no cure no treatment that my dad was going to die . Which of course I freaked out for the next two weeks cause my dad insisted on leaving the hospital before seeing the cancer centers doctors . Finally we seen the oncologist and he and the surgeon told us it was cureable this is the rollar coaster you spoke of . So my dad did chemo and radiation the whole time the oncologist telling us the scans don't show if tumor is shrinking . Something I know now isn't true but at the time we didn't know that . Dad had surgery we where hopeful it was all over he ended up with a colstomy bag and surgeon gave us the bad news they couldn't get all the cancer . Was sent to u of m who told us they seen no cancer waited three months checked again . 3 months of thinking my dad had beat cancer but wait next scan showed it was back . Dad wasn't happy they made him wait and changed oncologist again who did another surgery telling us they thought they could get the cancer . 

                       This time my dad was left with a urostomy bag to and almost died from PE's in his lungs but praise jesus he made it threw . Yet again they didn't get all the cancer and my dad's next pet scan showed what we where told was spread to the abdominal cavity and oncologist told my dad he would need lifelong chemo . Yet another gut punch I prayed it was wrong we had been thinking cure all the time . 2 weeks later oncologist says he spoke to surgeon and they don't think it spread they think there is just a small amount on the tailbone . So small it didn't even show on the scan without seeing it my dad wouldn't do chemo until he saw it was there . So we have been on the " wait and see " approach as well which sucks I'm sure you know about the scaniexty that comes with it . Dad's next pet scan is tomorrow and we are just praying god bless's us with a good clear scan . So I for sure can identify with the rollar coaster affect your story has as I am sure everyone can but it seems like some cancer's bring more rollar coasters then others do . 

          Like you me and my dad have a strong faith in jesus and god and we know our faith is the only reason my dad is still here today . My dad's Primary Doctor tells my dad everytime he see's my dad that he has no idea how my dad is still doing so good . We look him right in the eyes and tell him it's our faith in god duh :) god will get you and my dad threw this I'll be praying for you . 

P.S just a little advice don't be afriad to get a second opinion if you don't feel like your medical care is good enough that's what I am trying to get my dad to do now 

 

Tueffel's picture
Tueffel
Posts: 259
Joined: Feb 2020

Hello,

Welcome to the forum no one wants to join. Dont worry your text was not too long. The more info the better. 

Cancer is a fight. I can only relate from a perspective as a daughter so maybe your kids depending how old they are do experienced the same fears I had during my dads cancer journey. My dad was diagnosed with stage 4 a year and some days ago. He had 2 months chemo, liver surgery, colon resection, 4 months chemo and now another liver surgery in a few days but the most important thing he is still here and he can be cured still. We hope that is the last surgery and he will be good afterwards. 

As long as doctors can remove the cancer via sirgery or RFA it is good. Hopefully you dont have to go through chemo again afterwards. 

Maybe you dont want to read it but you were diagnosed at 40 and that is really young. Do have any other fmily members with cancer? Especially the younger ones? Is genetic testing important for your family? Also your kids shouldhave their first colonoscopy at 30. Prevention is so important and you dont want your kids to experience the same issue maybe. I dont want to have my future kids going through the same I am going through with my dad and it would be nightmare for my dad to see me suffering with same disease. So when your kids are old enough you should talk about it to them.

Good luck!

JonD1482
Posts: 2
Joined: Jan 2021

I tuned 40 in Sept 2020. End of November had a colonoscopy and they found a mass that turned out to be cancerous. Had my resection surgery in Dec and start my 2nd round of chemo treatment this week. Lucky to have my wife, family and friends to lean on for support. You're obviously not in this fight by yourself and hope for the best for you. 

Annabelle41415's picture
Annabelle41415
Posts: 6697
Joined: Feb 2009

Welcome to the boards, but I'm sorry that you had to join.  We are a wonderful, compassionate group that can help you deal with all of your "rollercoaster" of emotions and understandings of your journey.  It sounds like you have been through a lot before joining this group, but sounds like you are managing.  It's hard when you are young to find out you have cancer, let alone with 5 small children.  Your post wasn't too long and it was very informative.  God was very strong in my journey as well and pray for this group always.  I'm not familiar with RFA ablation but others on this group are.  Let us know if there is anything we can help you with in the future.

Kim

Wadsdan
Posts: 8
Joined: Feb 2021

Thanks everyone for the welcome and the kind words - appreciate it very much.

 

I was wondering if any of you happen to know of any stage 4 survivors/folks going through it currently? I wonder maybe if it might help me to see there are others in similar boats - maybe learn from those who have/are conquering it, etc

 

Tom M.
Posts: 174
Joined: May 2019

There are many stage 4 survivors here. I myself have just what you have for 2 years now. The treatments today are pretty good. Keep a good attitude about it all and don't google things. Google is not as smart as some think it is. Sounds like you are off and running with a good start. Keep it up.

Wadsdan
Posts: 8
Joined: Feb 2021

I tried to send you a direct message, or email thing through here - just had a couple of questions about your chemo regimin, etc

 

Apprecaite it

sgold88
Posts: 44
Joined: Oct 2020

My wife, in August 2019 was diagnosed at 39, stage 4 colon cancer with mets on her liver. You can read our story in my profile. I always counted on the idea that the odds are what they are, but those are the odds for ALL the cases. Those odds take no account of age, lifestyle, etc. At the moment she is NED and Gd willing, she will remain so. Age is on your side and whatever the odds are, surely someone has to fall in the positive side of those odds, so why not you?!   This site helped me tremendously when I was dealing with my wife's cancer. Use it. Everyone here will help make a difference in your journey.  

Wadsdan
Posts: 8
Joined: Feb 2021

Thanks so very much for your response, heareing these first hand experiences of patients and/or caregivers really does make such a difference. Seems like there is so much negativity around, but these do provide hope and drive to continue forward.

danker
Posts: 1282
Joined: Apr 2012

Your age is certainly in your favor!!  However you just never know!  I was 77 when diagnosed  stage 2 boarering on 3.  The year I became 78 was indeed a bumpy one!  I will soon be 89 and continue to be NED(no evedence of disease).

So just take it a day at a time and assume you will beat it as many of us have.  Good Luck to you!

Wadsdan
Posts: 8
Joined: Feb 2021

Wow, that is awesome danker 89 and NED !! Thank you for your wise word's, I truly do appreciate them

OnTheRoad
Posts: 19
Joined: Jul 2018

Good to know you are focused in your disease. I was diagnoses as stage IIIB initally (2018) and ealry 2020 they found a met in my liver.

About 2 weeks after finding the met, I also went through a RFA procedure. I just finalized my routine exams (one year later) and I am still NED. 

If I could provide you one hint about RFA... it is really effective for LITTLE mets. There is a 95% of chance to cure that single met if the size of it is smaller than 3cm (a little bigger than one inch). This success rate is comparable to surgical ressection. For sizes bigger than 3cm, the success rate drops rapidly.

If your met is larger than 3cm, definitively go to microwave ablation. It is EXACTLY the same procedure, but with an equipment that is able to "burn" a larger area than RFA is. Very large mets will require surgery to have a good chance to be cured.

For any of both procedures, look for the best doctors possible (and you probably have a good one, for what you said). This is the kind of surgery where success is the result of a mix between science with the art made by the surgeon's hands. They need to be very precise to reach the exact place where the met is located.

On a personal feedback, my met was located deep inside the liver (and not in its surfaces) and in a place that would be difficult to reach in a surgery, so a big hepatectomy would have to be done to cure it. I felt absolutely NOTHING after the RFA, since there are no nerves inside the liver, only in its surface. My doctor even recommended me to take some rest and remember I had a procedure, because on my view I would be able to start working out again very soon. 

I hope you are sucessful on your journey. Let us know how we can help any further.

 

 

Wadsdan
Posts: 8
Joined: Feb 2021

Thanks OnTheRoad for the info, it is so very helpful and specific to my situation - the one bugger on my liver they initally missed because it was so small was 21mm at the most recent CT scan - the RFA ablation is schedueled for in just over a month's time from now. I wonder how they will know what they are dealing with however as no scan is schedueled before the RFA procedure takes place, to me it would make sense to do a scan or somethinng right before the procedure?

 

I will defnatley keep the microwave option in mind and ask specifically about that at my upcoming consult - i hope and fully expect the side effects to be quite minimal compared to my 6+ hour liver surgery! :)

 

Thanks again.

DanNH's picture
DanNH
Posts: 98
Joined: Feb 2021

All of this input gives me reason for hope and a boost out of the pit of despair. My wife and I are just beginning this journey. Chemo with Folfox begins the first week of March. I guess that the take away is that you just have to take the ride without knowing what the stops and final destination will be, or when you will arrive. It seems like life and hope turn on a dime. This thread has been a great help! Thank-you! I am learning so much about this from all of you!

Wadsdan
Posts: 8
Joined: Feb 2021

Absolutley, I am about a year and a bit ahead of you in the ride - i was told initally no surgery was possible, but after 6 months of chemo liver surgery did come about, not sure exactly the details of your situation - but yes like others are saying here, the best thing I can say is DO NOT read general stats, do NOT fill yourself with negative or pesmimistic thoughts - try to stay busy, keep your mind occupied and know that you aren't alone.

 

I dont want to sound preacy, but my wife and I's faith in God through this journey so far has been such a source of hope and strength - its hard to put into words

 

If I can help you with anything at all, please reach out - i think there's  a way to send a direct message here, not sure i've figured that out however

OnTheRoad
Posts: 19
Joined: Jul 2018

Hello, Wadsdan

Usually (at least in my country), the RFAs are made with a "core" team of 2 professionals : One of the doctors would be the one with an ultrassound or CT device "guiding" the surgeon, who would be with the needle trying to put the "point" of the needle exactly at the place where the met is located. After the needle is corretly placed they just connect it to a small equipment and leave it there for 12-15 minutes. There is no more to be done, only monitoring.

In my case, one thing I liked very much was that the doctor with the ultrassound device requested me to go to another exam with him prior to the surgery.  He  wanted to "locate" the met himself using the same equipment and contrast to be used during the surgery. He wanted to be sure he would be able to help efficiently during the surgery, since sometimes the met is highly visible using another equipment (like MRI) but not on his. At that time he confirmed my met had 19mm using his equipment.

A last thing I just remembered is about the "heat sink" factor. If the met is too close from a big blood vessel, the blood vessel could act as a "radiator" and "steal" some of the heat generated, especially in RFAs, not allowing the needle to "burn" close to the blood vessel.

Try to get the best doctors for your surgery... and beware of the met size... if you can control both items, you should be able to get rid of this one for good.

Here is some info I collected from a place I trust :

"The successful management of liver metastases from CRC can be obtained with RFA. RFA has a potential to achieve the same overall and disease-free survival rate as surgical resection for patients with liver metastases, while causing fewer side effects. The use of laparoscopic or open surgical approach allows repeated placement of RFA electrodes at multiple sites to ablate larger tumors. In addition, an accurate evaluation of treatment response is very important for successful RFA therapy, since a sufficient safety margin (at least 0.5 cm) can prevent local tumor progression. Finally, because early and accurate diagnosis is necessary for the appropriate management of the complications, physicians should be familiar with all the features of the complications of RFA therapy."

source of the text above: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3572308/

 

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