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Meet Andy...

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Cancer of Unknown Primary or "CUP" is rare. People like Andy better known on the community as ACH2015 are rare too. We are sure glad to have him sharing his morning reading with us and offering support wherever it is needed. Take a moment to learn more about how Andy has navigated his way through a diagnosis of "CUP".


My experience with cancer began in November of 2015 with a pain in my left groin that I could not explain. It felt like a pulled muscle that I could not figure out "why does this hurt". Anyway I kept going back to my doctor, and at one point I was checked for bladder cancer, and after a cystoscopy - that came back negative. Then I had an ultrasound, and they thought I had a hernia. Eventually the pain moved up to my left pelvis and it was believed that I had an infected lymph node. So fast forward to May of 2016 when I had my first CT Scan, then right into speak with the surgeon that ordered the CT scan the next day. He indicated the lymph node that was giving me pain was enlarged and suggested either a needle biopsy or removing it surgically. So I opted to get it taken out. June 01 2016 I had day surgery at my local hospital and went home 3 hours later. I felt great until June 13th when I went back for follow up and the Pathology Report. The surgeon told me I had cancer. Metastatic Adenocarcinoma of an Unknown Primary origin. That was like a bomb being dropped on me. So I had more scopes ordered by the surgeon, and then I was sent to the Cancer Center closest to me. In early July 2016 my wife and I went in to speak with an Oncologist. So I figured my bad news was going to be chemo and radiation. I did not even get that. The Oncologist told us I had 4 to 6 months to live (maybe a year) and that he did not think treatments were going to help me. So I demanded a second opinion, and fired him and got myself set up with a new Oncologist at PMH in Toronto that had gone so far as to order a new CT scan and set me up with a surgeon as well. Wow what a difference! So I got a P.E.T. scan in late August 2016 and it showed no cancer in my body other than what they knew I had in my left pelvis, a tumor 5.3 cm and several of the lymph nodes in my left pelvis and groin (left inguinal region) were cancerous as well. After 10 months of trying to figure out what was wrong with me and not finding where the original primary cancer was, I started treatment.



In mid-September of 2016 I started what would be 6 rounds of chemotherapy (3 weeks apart) in hopes of shrinking and killing the tumors. The oncologist(s) had to use their best educated guess as to what chemo drugs to use based on the area in my body that the cancer was found in, because they could not identify the type cancer or its origin. So they did a good job of selecting, because follow up CT scans showed the tumor and cancerous lymph nodes were shrinking and dying.


Surgery happened in late January of 2017 at Mt. Sinai Hospital in Toronto. The tumor had grown around my left femoral vein, so they had to take a piece of vein out of my right leg to replace the cancerous part in my left leg. They took muscle, 10 lymph nodes, part of the femoral vein and the now half dead tumor out of me after 7 hrs of surgery. So I stayed in hospital for 5 days and was sent home to recover.


After assessments by the surgeon(s) I was deemed fit enough and sufficiently healed for radiation treatments to sterilize the surgical area and ensure any cancer cells that may have been missed were dead. I started 28 rounds of radiation in late March and finished early May 2017.


So I have no feeling in my left leg from the top of my thigh to below the knee due to the nerves being severed. I also have lymphedema due to the lymph nodes being removed and I wear compression shorts and a compression stocking to help control the swelling. 


I feel very lucky, and had great medical intervention along with family and friends for support, and came through all this stuff pretty well. I have been off work since July 2016 and am still recovering and trying to figure out what the future holds. I have been a Correctional Officer for 27 years, but can't go back to that particular work due to impairments.


For the next 5 years I will get a CT Scan every 3 months to check for any recurrence of cancer. The doctors say the primary cancer may have been killed by my immune system, or it's still just too small to detect. So prevention is my best tool right now with the follow up CT's. I think it will be fine. I feel pretty positive.


Being unique is not a good thing when it comes to cancer. Cancer of Unknown Primary accounts for only 1 to 3 % of all cancer cases. I need to live with never knowing if or when cancer may return. It has become easier with time, but never knowing does have its moments, and has been hard to wrap around my head at times. So good life practices such as exercise, healthy diet, positive attitude and accepting as best you can the situation you are in will all help you both today as well as down the road.


Anyone going through cancer needs to understand what they are up against. I would encourage anyone going through cancer to do research for themselves. That will help you make your choices for treatment options available to you. Trust your instincts and don’t be afraid to ask for a second opinion during any part of your treatment plan. To put in perspective the amount of intervention I had from determining the diagnosis to chemotherapy, and radiation after surgery, I attended 7 hospitals and had 13 specialists involved in my case. Then there are the Home Care Nurses for after care of drains and wounds, Chemo Clinic Nurses, Social Workers, Lymphedema Therapists, CT Scan Technicians all included during treatment and for follow ups now and down the road. So there is a lot to understand from the huge medical care team that is going to be working with you to get you through your cancer experience. Seek support not only from family and friends, but also support groups - both on line and in person. Social Workers at hospitals are another invaluable resource available to you at cancer centers across the country as well. Use them for yourself as well as your family. Your family is going through this with you and need support systems as well.

Cancer can be a rough road, and having supports are essential to making it through the rough patches. Build your own support network from family, friends, mental health professionals support groups and don't forget your personal faith. I am going into my third year of this cancer experience. Living well, the medical follow ups, and the ongoing recovery both mentally and physically while trying to function in what I call my "new normal" after cancer. It does not end after the treatments, and each recovery is going to be unique. Getting a second chance at life is the best lottery anyone could win. I truly feel lucky to have been given this second chance.


Thank you so much for sharing your story with us Andy. If anyone else is interested in being featured in the Meet Your Neighbour section please e-mail us at cancerconnection@cancer.ca.




Comments

@ACH2015, Your story is gripping!   I'm sure a lot of people will feel encouraged and strengthened to learn what you've come through by not giving up!  I didn't know you were given such a grim prognosis initially.  Thanks for sharing!  I hope a lot of new members will read your intro here!   All the best to you! 
  • Posted Sun 12 Nov 2017 03:01 AM EST
Momma Bear‍ 

Yes, it sure started out pretty dismal, but I followed my instincts and ended up in a far better situation.

I encourage people to advocate for themselves and not be afraid to ask questions of the medical profession. So many people here looking for answers and support.

Thank you

Andy.
  • Posted Sat 18 Nov 2017 04:20 PM EST
I admire your strength and determination yet common sense, take it as it comes approach. I completely agree with everyone- you have been a wonderful addition to this site. Thanks for sharing Andy.
  • Posted Thu 09 Nov 2017 12:44 AM EST
Hey jorola‍ 

Thank you so much. I was fortunate to have support from many sources and think its importaint to pay it forward here.

And.
  • Posted Sat 18 Nov 2017 04:13 PM EST
ACH2015‍ Thank you for sharing your story, Andy.  I'm glad you fired that first doctor and are with us today sharing your insight and wisdom,

Debbie
  • Posted Fri 03 Nov 2017 02:55 PM EDT
Thanks Dielle‍ I appreciate that!

I am very glad to be here and a part of this great community. I have gained so much and am very happy to share what I can.

Keep well Debbie

Andy.
  • Posted Fri 03 Nov 2017 03:27 PM EDT
Thank you for sharing your story Andy and for your insightful posts.  Your voice is articulate and always has such a common sense approach.  Your story underlines the importance of self advocacy and a second opinion.  A friend of mine also has CUP and following her surgery, was given a 50/50 chance of survival and no treatment plan.  It took a while for her to overcome her feelings of hoplessness, but she ultimately advocated for a second opinion, which confirmed her surgeon's prognosis, so did not have chemo.  She did go through radiation, but it was not successful and for the last 10 months, she has been dealing with metastises to her lungs.  She is involved in a clinical trial through PMH but won't know for a little while longer if it is having an impact.  I hear such good things about PMH and I am hopeful they can help her.  
Thanks again.........Minus2
  • Posted Fri 03 Nov 2017 11:57 AM EDT
Minus2‍ I am sorry it took me so long to respond to you and others here. I just went in and noticed several comments today. Thank you so much for what you said.

I completly understand your friends sense of hoplessness - I have been there myself. Its a very scary place to be. If she is being treated at PMH - she is in very good hands. She has probably met the CUP Oncologist that helped me there - there is only one oncologist that specialies in CUP! Please tell your friend I have CUP as well - and she is in my thoughts - I am sending her a hug. I sincerely hope the clinical trial she is participating in is successful. Please keep me up to date with her progress.

Thank you

Andy
  • Posted Sat 18 Nov 2017 04:42 PM EST
ashcon‍ 

Thank you for the strength and positive vibes you sent me. We all need neplenishment at times! I am glad to hear you are a self advocator as well, and have benefitted yourself because of it. Knowledge is power as you know. Keep that sense alive.

I last heard you were undergoing chemo treatments, had found another lump (arm pit) and were expecting surgery early in 2018. I am sending a load of stength and positive vibes to you as well. 

Keep well Ann.

ACH2015
  • Posted Thu 02 Nov 2017 05:22 PM EDT

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