Mar 19, 2013 - 8:57 pm
I've been reading a lot of posts on this board and I do believe my husband's situation is not normal at all. I understand why all of these doctor's are flabergasted.
Basically, my husband had a cyst removed from his upper buttock May 2012. They originally felt this was a benign growth and they removed it because it was infected. He had some sort of cyst in this area for 30 years. On examination of the cyst, there were a few squamous cancer cells noted on the outside of the cyst. They just said to keep an eye on it. A mass grew back in the same area and they removed it with further cancer cells. They went back in and took a wider resection with more cancer cells noted. This was in August. After the second surgery, they sent him for a PET scan. This scan showed some activity of the previous surgery (which they felt was just due to the trauma from the surgery) as well as activity in one of the nodes. Biopsy of the node revealed cancer cells. We were due to go to Germany in October, so they said we could wait to have the lymph node removed when we got back. It was barely palpable before we left and very palpable by the time we got back. They assured us it was no big deal to wait that long.
They removed the lymph nodes in the groin, and only one of 11 was affected, but it was a large node. They were positive and felt that there was nothing to worry about. In the meantime, a pimple size lesion was noted at the original incision site. They felt this was no big deal, but within a couple of weeks grew to the size of an apricot. They removed it and it showed cancer again.
At this point (December), the surgeon sent us to see an oncologist. This oncologist did a PET scan and the cancer had spread to his lungs.
We are shocked. He's been under care this whole time and we kept being told that the margins were clear and they felt they got it all.
He has undergone weeks of radiation, with tumor area from anal region all the way to the groin which is now wide open because of the radiation. He started biotherapy in December and January, and the cancer kept spreading. They finally put him on Carbo and Taxol. He has two treatments of this and develops an infection. Tomorrow he will go in for another treatment of this, and it will make three in a row.
But now he's having seriously hard time breathing. He is barely mobile. Not eating well and constantly in pain.
This is so hard to believe.
The doctors tell us that they have never seen something so aggressive. We took him up to the Cleveland Clinic who felt that his course of therapy was the best one available.
Now what? I just sit here and wait for him to die????
He's 47 years old. We've been married for 23 years and he's my best friend. To say this is heartbreaking doesn't even come close to covering it.