Looking for anyone in the 20-40 age range with metastatic cancer of unknown primary?

cancer of unknown primary
My beautiful bride (Wendy) of 8 months was recently diagnosed with metastatic carcinoma of unknown primary. She recently celebrated her 50th birthday. She is the picture of health; a triathlete with absolutely no symptoms. In fact, the weekend before she was diagnosed, she ran 10 miles on Saturday and biked 50 miles on Sunday.

A grape-sized lump on her neck sent her in for a biopsy which was initially diagnosed as adenocarcinoma. We headed straight to Mayo Clinic the following Monday and have been here for 5 days. So far, she has completed no less than 15 tests. They have found additional nodes all along her GI tract and several tumors in both lungs. CT Scans, ultrasound, MRI all clear of primary source.

Tomorrow she has a scheduled colonoscopy. If that is clear, chemotherapy has been suggested.

The experts here are amazing! She is handling all of this with so much courage and grace. I can only watch her in disbelief. She just keeps throwing her hands up and saying "I feel great".

I haven't even begun to look at survival rates, but I have to think that even though the cancer has metastasized to multiple places that her prognosis will be better than average.

At first, I had trouble understanding how it could have spread to such an extent yet the team is still unable to pinpoint the source. But I think that if colon cancer is ruled out, then they will just treat everything that they know it is "isn't"

Only 7 days into this, and having read and researched volumes of information (everything we can get our hands on) we need to realize that we only have a fractional understanding of this complex disease. Still, we feel like we need to move immediately with treatment and get this out of her body.

As I sit typing this in the wee hours of the night and look at her sleeping, exhausted from days of being poked, pushed, radiated, and tested (not to mention this evening of fasting and "MoviPrep" for the colonoscopy test tomorrow), I would give anything to be able lighten her burden or take the cancer into my body. Every day she becomes more beautiful to me and I thank God that I get to share my life with her.

I am reminded of a story told by a holicost survivor. She observed how people will describe a traffic jam as being horrible, or a tooth ache as being miserable. Then she talks about when she was a little girl and the Nazi's took her mother, father, brother and her away to a concentration camp. When they arrived at the camp, her mother and father were lead down a hallway never to be seen again. She and her brother were seperated into different cells. One day each week, she was allowed to exercise outside in a fenced area. She would see her brother in a nearby pen and they would stand facing each other, seperated by a 6 foot walkway and hold their hands up against the fence. One day she went out to exercise and her brother was not there. That, she said, was a horrible day.

I am counting my blessing that Wendy did not suffer today and that I get to spend tomorrow with her, and am comforted by the fact that God has a plan and and He is in control.

lwaugaman said:

cancer of unknown primary
My beautiful bride (Wendy) of 8 months was recently diagnosed with metastatic carcinoma of unknown primary. She recently celebrated her 50th birthday. She is the picture of health; a triathlete with absolutely no symptoms. In fact, the weekend before she was diagnosed, she ran 10 miles on Saturday and biked 50 miles on Sunday.

A grape-sized lump on her neck sent her in for a biopsy which was initially diagnosed as adenocarcinoma. We headed straight to Mayo Clinic the following Monday and have been here for 5 days. So far, she has completed no less than 15 tests. They have found additional nodes all along her GI tract and several tumors in both lungs. CT Scans, ultrasound, MRI all clear of primary source.

Tomorrow she has a scheduled colonoscopy. If that is clear, chemotherapy has been suggested.

The experts here are amazing! She is handling all of this with so much courage and grace. I can only watch her in disbelief. She just keeps throwing her hands up and saying "I feel great".

I haven't even begun to look at survival rates, but I have to think that even though the cancer has metastasized to multiple places that her prognosis will be better than average.

At first, I had trouble understanding how it could have spread to such an extent yet the team is still unable to pinpoint the source. But I think that if colon cancer is ruled out, then they will just treat everything that they know it is "isn't"

Only 7 days into this, and having read and researched volumes of information (everything we can get our hands on) we need to realize that we only have a fractional understanding of this complex disease. Still, we feel like we need to move immediately with treatment and get this out of her body.

As I sit typing this in the wee hours of the night and look at her sleeping, exhausted from days of being poked, pushed, radiated, and tested (not to mention this evening of fasting and "MoviPrep" for the colonoscopy test tomorrow), I would give anything to be able lighten her burden or take the cancer into my body. Every day she becomes more beautiful to me and I thank God that I get to share my life with her.

I am reminded of a story told by a holicost survivor. She observed how people will describe a traffic jam as being horrible, or a tooth ache as being miserable. Then she talks about when she was a little girl and the Nazi's took her mother, father, brother and her away to a concentration camp. When they arrived at the camp, her mother and father were lead down a hallway never to be seen again. She and her brother were seperated into different cells. One day each week, she was allowed to exercise outside in a fenced area. She would see her brother in a nearby pen and they would stand facing each other, seperated by a 6 foot walkway and hold their hands up against the fence. One day she went out to exercise and her brother was not there. That, she said, was a horrible day.

I am counting my blessing that Wendy did not suffer today and that I get to spend tomorrow with her, and am comforted by the fact that God has a plan and and He is in control.

CUP
Hi
Im afraid im not in your age group but am 56 years young. I have recently been diagnosed with CUP cancer. Like Wendy up until 2 years ago i was cross country mountain biking, now breeding horses and dogs so am pretty fit. I have several lymph nodes with cancer so they are assuming after multi tests that it is breast cancer. I start chemo on Friday the 15th October with FEC T for 8 rounds then an operation to remove my lymph nodes followed by more chemo. I am lucky in as much as they havent found anything anywhere else just that there is still the elusive primary. They feel pretty confident that they can treat me and they suspect that they can keep me clear for as much as five or even ten years before it returns. I live in hope and like Wendy im strong so will fight this every inch of the way. As Wendy is so close on the time scale of diagnosis feel free to chat with me. I wish you all the very best as this is so life changing. I have had to give my horses away but have hung on to my dogs. Treatment is a long time with follow up every 6 months looking for the primary to re appear. At least i will be well looked after for the rest of my life. My hope is that the UK is throwing so much money at cancer and have set up the NICE guidelines for cup cancer that better research and treatment are just around the corner.
Good luck. Sallie

Adenocarcinoma, unknown primary, moderately differentiated

I was diagnosed last September (2016) with Adenocarcinoma, primary unknown, moderately differentiated. It was found in a retro perineal lymph node biopsy. The PET scan showed it was in my chest, abdomen, and pelvis. The cancer it acts/looks most like is ovarian (runners up are endometrial, breast, bile duct, etc.) so that is what they treat it like. However, I grew a new tumor in my lung while my CA-125 markers were responding to Carboplantin and Taxol (I had treatments of that every 3 weeks last September through early January) and when they tried to get me into a clinical trial I got declined due to not having some genetic/DNA/whatever marker signifying ovarian cancer so in February I started monthly treatments of DOXIL. This Friday I will hit the max lifetime limit for DOXIL. I had scans at about the 4 dose point and it showed the new tumor in my lung had "melted away" according to my oncologist, however my CA-125 has been steadily increasing while on DOXIL, which baffles my oncologist. 

I also am mostly healthy, other than being out of shape and tired and the DOXIL giving me sores in places no lady should have to deal with sores and making me sick to my stomach and aches for a week and lately longer after treatment. I also still have neuropathy in my feet, though it was worse with carboplantin and taxol. I still work full-time and am an active participant in the community theatre community here.

 

so, as of now, the plan after Friday's dose is to take a break and see what my body does. they took blood again today so I guess the oncologist will let me know if his proposal changes. All I know is I can't have anymore DOXIL after Friday.