This all started last year around December when I noticed a lump in my groin area. I never noticed it before and really didn’t pay it much attention. In January I called my sister and told her I think I have a tumor jokingly since she was a nurse. She said you probably have a hernia which it turned out I did. After a sonogram and a CT scan, they confirmed I had a hernia, but also had a mass growing down there.
I made an appointment with a surgeon to have a hernia fixed and he also said he would remove the mass thinking it was more than likely a cyst or other non-malignant mass. The day of the surgery the mass had grown quite a bit and got to the point where I could not lay flat on my back because of the intense pain. I had already been out of work for three weeks because I could not get enough sleep.
During the surgery, the Dr came out and explained to my sister that he did not know what this mass was and that it had wrapped around the blood supply to my left testicle and that he would have to remove it. During the surgery, he also got a second opinion from another Dr asking him what it was. They were both stumped.
He removed as much as he could and told me that he didn’t remove it all. He had sent it off to John Hopkins for a pathology report. 2 weeks later he called me and said it was a soft tissue sarcoma and I said you mean I have cancer. He said yes. He then said he was not comfortable with dealing with it because he had only seen one or two during his career. He recommended I go to either Shands Hospital of Moffitt Cancer Center. I chose the later.
I began with visits to four different Doctors that specialize in sarcomas. One was a chemo specialist and another was a radiation oncologist and the third was a surgeon the forth was a plastic surgeon specializing in postoperative cancer surgery. I’ve been out of work now for 2 months and expect another three if all goes well. I have just finished my radiation treatments. Driving 140 miles a day for 5 days a week for 5 weeks, that’s 70 miles each way. The tumor had grown three times bigger than before the first operation and again laying flat was impossible. The pain was unbearable. When I had my CT simulation I was really in pain but suffered through it. They have to do what they have to do so I had no choice but to suffer through it.
The absolute worst though was the MRI. Since it takes longer than a CT scan. I literally laid there cussing and saying every curse word I knew because the pain was so intense. I felt like I was on the rack. The guy doing it kept asking me if I was ok, I said no. Do what you have to and get me the hell out of here. On top of that, the same ten songs were playing through the headphones which were also torturing. I finally began my radiation treatments and again laying flat was torture. The women were very nice and apologized for causing such distress. I told them it wasn’t their fault, they are doing what they have to, to heal me.
They said do whatever I had to so again the curse words flew. I felt like such a wimp dealing with the pain, but it really is and was the worst I ever experienced. I’m going through their pain management doctors for the pain. I did not want to take opioids because of all I read about them, I’m taking Tramadol and Gabapentin plus ibuprofen for the pain right now. It keeps the pain at around level 5 with pain levels going to 8 someday.
On top of this, I now have pain from the radiation treatment and it’s in the worst spot. My groin area. My legs have swollen from blocked lymph nodes and my entire genital area is swollen from the treatment and the lymph nodes. On top of that my penis is totally misshapen from fluid backup.
The tumor is right above my penis and I fear I may lose it because of the margins. I’m having surgery Dec 12th. I will be going to my sisters home for the remainder of my treatment so that will help. Being single is no fun when your suffering. I don’t know how people do it.
I’ve been dealing with constipation and it’s effects and dread going to the bathroom because of the pain from bending down. My entire penis and scrotum itch and burn like fire from the worst sunburn because of the radiation. I also have to urinate constantly. I spend most days without any pants on at all and sit on some peepee pads so I don’t stain my chair with the Aquaphor. I have been sleeping in a recliner for two months now. I am 55 and to be honest feel like I’m 85. I have never felt so old as I do now dealing with this. Well, that’s my introduction glad to meet you.
