Cancer Survivors Network

You did not mention what type of cancer you have. From your description it sounds like you have a vulva cancer, such as the one I have, which is Bartholin's Gland squamous call carcinoma. My cancer spread to one of the lymph nodes in my right ingruinal (groin). I had a groin dissection to remove the cancerous node, along with three other nodes. Following the operation, I had chemoradiation for about seven weeks. A PET scan 2/3's of the way through the cancer treatment showed that the treatment was working very well. The primary tumor in my vulva was shrinking, but there was still cancer activity. I am having another PET scan in December. You can email me at enterpriseleadership01@gmail.com. Thanks -- EMF

I was diagnosed with squamous cell of the Bartholin Gland in 2007. My doctor told me this was so rare he had never treated it before. The tumor was on the rectal wall so it made it difficult to know if it was bartholin gland cancer or rectal cancer. After consulting with another specialist in a different city, who worked in conjunction with my local onocologist, the recommended the same treatment. Chemo the 1st wk of radiation and then again on the sixth and final week of radiation. They gave me a very poor prognosis since the tumor was so large and said they only hoped to shrink it enough to be able to remove it and not have to sacrifice my bladder, colon, vagina and vulva. It had spread to the vagina. The radiation was over the lower pelvis and complete genital area. The last week of radiation they repositioned and focused a high level of radiation directly on the tumor. My last radiation treatment was in Nov of 2007 and I had a PET scan in Feb of 2008 and it showed the tumor was completely gone. At that point, my onocologist told me they never felt they would be able to completely get rid of the tumor, but they did!! Never give up hope.

I was first diagnosed with Squamous Cell Carcinoma of the right groin lymph nodes with unknown primary in August, 2009. I had surgery to remove the affected nodes followed by 33 radiation treatments and 13 chemo treatments. My last Chemo treatment was June, 2010 and so far am doing good. Anyone out there with this diagnosis - I would love to hear how you are doing.

Java1990

My husband had gone in for a back ache and had lymph nodes removed on his right groin. He then started swelling and had lymph nodes removed on the left side groin because they were so big they were squeezing the uretha and he had a stent put in. They found cancer cells in those lymph nodes but after several ct scans and a pet scan they could not find the primary source. They did not want to do radiation because of the damage it causes so he has had chemo to target the pelvic area for colon, prostate, etc. He has had 7 chemo treatments now (one every 21 days) and he gets sicker each time a little but nothing has shown up as the primary yet. I would like to know what to do next because we are both very frustrated because it seems like the dr. just keeps giving chemo to get the $ and doesn't have much to say except the scans don't show any growth. Well, what if the chemo treatments are stopped? He has really started swelling up bad the last few times in his legs and feet. The dr. doesn't know why. Just that there is a blockage somewhere but doesn't want to poke around with needles or exploratory surgery because of the risk of infection during chemo.. What to do?

My left inguinal lymph was where the cancer was discovered. The tumor was quite large. They removed that surgically along with about 7 other lymphs. The cancer was still in the borders and the next ct-scan showed it was in my lymphs going up my abdomen and behind my kidneys. I was told it was incurable by one doc. and another gave me 2 to 3 years. I went to Seattle and was told by my doc there that he thought it was treatable, so another surgery where he removed another 20 or so lymphs. Then radiation combined with 2 small dose chemos. More chemo was planned but my platelets dropped and never came back up. But since I've had 2 cancer free ct-scans. I had another surgery to remove a 5 cm villous adenoma by colon resection. They found that during a colonoscopy before the other surgeries, as they were looking everywhere for the primary that they never found. They are treating mine as if it is like a cervical or female type. Even though I had a hysterectomy at least 15 years ago.
The only side affects I have are less energy then before, but not bad. I have some edema in my left leg. Not too bad. My lower back is more sensitive to injury and I need to be careful with that.
I had the best radiology people etc. That's what it takes.
I hope to hear from you, and others with similar cancer.
Teri