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Diagnosed - Stage 4 @ 40, please help.
Wadsdan
3 Posts
Hi everyone,

First post here, I'm hoping perhaps putting my story out there will be therapeutic and maybe even help someone else. I believe connecting with others who understand the journey will be beneficial.

I apologize in advance if I am too wordy, Im not sure how much to share/not share.

I was diagnosed Dec of 2020 - in a trip to the ER with just a subtle, but persistent ache in my side, no other symptoms what so ever ( I thought it was a waste of time going, but my wise wife insisted ) Thankfully I had a wonderful ER doc who was very throughout , it would have been easy to send me home as I was downplaying everything to the 9th degree. Long story short there, they saw the mets on the liver and possibly lung mets ( "good news" i was told was that at least it wasnt primary liver cancer, gee thanks doc )

I was in 3 days later for a colonoscopy which confirmed the primary tumor - right sided.

I was initially told we dont know re: surgery so let's start with 6 months of FOLFOX. Surgery was then a yes, which flipped to a no and then again back to a yes ( talk about a rollercoaster ) Thankfully I did have a very , very good response to the treatments my oncologist said.

Colon and liver resection was scheduled for August of 2020 - my liver surgeon was wonderful and I know she was given wisdom from above, because she ended up not doing the colon resection at the time, but ordered a follow up colonoscopy. Liver resection went beautifully, 7 spots removed with clear margins ( they were surprised I think )

Follow up colonoscopy revealed that although diagnosis was correct, the location of the tumor was wrong! It was a left sided tumor not right sided, further which we feel tremendously blessed for is that a biopsy revealed the original tumor is dead, and only scar tissue remained. General surgeon was a bit at a loss as to how that could happen.

We entered a "wait and see" approach at that point, CT scan 3 months later revealed a spot on the liver they thought was new, but later discovered it wasnt new it was present at surgery but it was too small and they missed it - still wait and see mode - fast forward another 3 months and another CT scan shows continued growth of that liver met - chemo or RFA ablation were the choices, we opted for RFA ablation which is upcoming.

Lungs, they still dont know forsure - i believe they assume are related, but still way too small to biopsy or confirm.

I've struggled with anxiety and a lot of "what if's" , which really bothers me as before I was tremendously positive and really didnt think twice about any possibly symptom or issue.

The battle largely has been a mental one, and at times I feel like I am doing such a poor job coping.

Again, apologies if this was too long winded - but hoping maybe there are some other stage 4 survivors out there who have wisdom/experience they can share.

Thanks
Dan

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5 Replies
ashcon
1792 Posts
Wadsdan
Thanks for sharing your amazing story of what you've been through/ are going through. What you've shared is not long-winded at all, and I'm sure others will benefit from reading our words and from connecting with you.
I'm so glad to hear that your ER doc was thorough. You hear too many stories of the opposite happening. Your situation is a perfect example of quickly things can change on a dime!
I saw a comment posted on this site that said that dealing with cancer is 10% physical and 90% emotional/psychological! So true! What resources are you tapping into that you are finding helpful?
I wish you success with the RFA Ablation. When is that happening? Is it being done via endoscope or via laparoscope?
S2020
11 Posts
Hi Dan,

I am sorry you are going through all this. Wow, what a roller coaster of an experience this must be for you with all that you have experienced.

I am glad you had a thorough ER physician, a wonderful liver surgeon and an encouraging wife who prompted you to go to the hospital. That’s encouraging that the liver surgery went well with clear margins. Wow, the primary tumour in the colon was dead and only scar tissue remained? That’s great! Wishing you the best possible outcome with your next liver surgery.

The “wait & see” approach is tough!!! It naturally causes anxiety about what may or may not happen in the future.

I am being treated for metastatic disease to the lungs and liver (primary tumor: breast) because everything showed significant improvement with chemo, but lung nodules and liver lesion were too small to biopsy. There’s a possibility the liver lesion was a hemangioma and I have high hopes the lung nodules were an untreated infection or something other than cancer.

My experience with the “wait & see” approach and related anxiety has been helped considerably with a hospital based Mindfulness Based Stress Reduction program. Many hospitals offer the program online now during the pandemic. It is based on Jon Kabat-Zinn’s book, “Full Catastrophe Living.”

Also, in between procedures, tests and treatments, it’s important for you and your wife to add enjoyable activities to your days. Easier said than done some days! Do you like music? That’s important, too. If you like inspirational material, the Guideposts website is filled with uplifting and inspiring stories and messages. Wellspring has also moved many of its support programs online and that may be another helpful resource for you and your wife.

One more thing...you sound too hard on yourself. No apologies necessary for expressing what you feel and are experiencing. Be sure to return again and let us know how you are doing.
Wadsdan
3 Posts
Hi ashcon‍ - thank you for your message. My family has been an absolute rock, in particulary my wife and 3 sisters have been amazing. I've also been leaning on some very good friends, and realizing that the importance there is on quality not quanitity ( of friends ). We are part of a local church in our community aswell so our faith, and pastor/others have been wonderful.

We've also worked with a naturopath for years ( prior to any of this ) and she has been an amazing support aswell.

The RFA ablation is scheduled for March 30th, it will be done laproscopically ( I believe ) - its just a day procedure for the one stubborn spot left on my liver
Wadsdan
3 Posts
Hi S2020‍ - thank you for your message, it sure has been a rollercoaster and you are 100% right the wait and see causes the mind to race sometimes that's forsure.

I do feel very fortunate to have had that original tumor die and only be left as scar tissue, we are support by lots of prayer that is forsure - medically speaking the surgeon nor the oncologist really had much of an explanation, but I do : )

Your story sounds similar to mine ( all be it different original tumor of course ) a friend of my sisters is an internal medicine , critical care doctor who is also a respirologist and he said there are very often "things" found in the lungs which are sometimes assumed to be cancer but really arent, so there is hope there forsure I would say. My liver lesions were pretty well no doubters due to the size, but thankfully very shallow my liver surgeon said so the liver surgery was relativley "easy" if that's even possible for a liver surgery.

I had heard of the Mindfulness Based Stress Reduction program before, but you are the 2nd or 3rd person to tell me about it now so I will definatley check that you, thank you.


Tso
3 Posts
Thank you for sharing your story. My husband diagnosed with stage 4 rectal cancer spread to lymph nodes liver and bones.
temporary colostomy done in dec and started on Flofox chemo since Jan every 2 weeks. One more chemo then another CT scan . Not sure what our future treatment will be, our oncologist she kind if said on out first meeting no use of radiation and surgery ,kind of heart breaking. As our oncologist surgeon told us chemo ,radiation and surgery afterward. Its seems everyone is not on a same page. After 2nd chemo oncologist mentioned blood works are fine and cancer count is came down quite a bit. Hopefully that is a good sign.
Best of luck for your future treatments and prayers.
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