CSN Login
Members Online: 16

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

KWeiser's picture
KWeiser
Posts: 16
Joined: Jul 2010

I am 32 with Adenocarcinoma of Unknown Primary. My first line of treatment was chemo with Carboplatin and Taxol. I had 10 rounds and the cancer was mainly stable with some spreading to the bone. Tomorrow is my 3rd round with my second line of treatment, chemo with Alimta. I am very blessed and am in good condition (well I am out of shape and weak and tired, but you know what I mean) and rarely see anyone where I receive my treatment that is any where near my age. I would like to see what others in my age range with unknown primaries think about the "unknown primary" part, the prognosis, types of treatment, how treatment is going, and how life in general is going.
God bless and I will continue to pray for all the multitudes of us with cancer!
Kelly

lwaugaman
Posts: 1
Joined: Oct 2010

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.

salliewaters
Posts: 3
Joined: Oct 2010

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

salliewaters
Posts: 3
Joined: Oct 2010

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

WonderWoman88's picture
WonderWoman88
Posts: 19
Joined: Nov 2010

Wow, I have never heard of CUP. I will pray for you as well :)

I am just recently in remission for about a month now. I pray and hope it doesnt come back. I know how it feels when its just you and no one your age is around.. Its not fun.

But there is light at the end of the tunnel. you will live to be strong and healthy again. God bless! I hope to hear back from you :)

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network