Squamous Cell Carcinoma-Unknown Primary-inguinal nodes - Cancer Message Board

DJW · 07-23-2006, 03:40 PM

I posted last month in the Lymphoma thread about my biopsy results from an inguinal lymph node showing Squamous cell carcinoma....I have just returned from the Cancer Treatment Center of America in Tulsa Oklahoma and found out a lot more information about this...

I know SamQKitty will be interested in my diagnosis because I think she had basically the same thing....

I went to the Cancer Treatment Center (you see the adds on tv..) because I was getting terrible information from my local doctors about my condition. I found the Cancer center website online and they had a live chat - so I contacted them and they were so wonderful! They flew me to Tulsa for a battery of test's and scans to determine just what I had and if it was localized or spread. Thank God it is localized in my inguinal lymph nodes! I would recommend ANYONE with cancer - who is less than satisfied with their current oncologist - or physician - to contact the Cancer Treatment Centers of America! They are wonderful and hopeful people and they have cancer treatment tricks up their sleeves (by way of new machine technology, drugs, etc,) that can literally turn around a hopeless prognosis.

OK - I was diagnosed with Squamous Cell carcinoma - in the left inguinal lymph nodes. I have a mass of nodes that measures almost 5cm. The CT scan showed the mass is pressing against my femoral artery but they are not sure if the artery is actually involved yet. The PET scan showed no other cancer in my body...

Right now they are calling it a CUP - but they said they will be looking for a primary site when they go in there to remove the nodes. So far all related areas are showing clear of cancer (reproductive areas and anal tract). These would be the most likely places for a primary site of this type of cancer in these particular lymph nodes.

I am scheduled for surgery in August and after I heal - I will do radiation.
At the Cancer center - I was seen by numerous doctors (all under one big roof) - a Radiologist, surgeon, gynecological oncologist, etc... I underwent PET and CT scans and blood work. The Cancer center obtained my biopsy results from my local doctors prior to my arrival in Tulsa. They all seem to think this is treatable and curable - which is such a relief because if you do google searches for information about CUP - they have some pretty grim news out there!

I'd love for SamQkitty to give me some information about her surgery (if she had surgery) and what her experience with this stuff has been like.

SamQKitty · 07-24-2006, 09:56 PM

Oh my gosh, DJW...your case is almost EXACTLY like mine! My tumor was slightly less than 5 cm, pressing against femoral artery, on the left side. The only difference is that my cells were poorly differentiated and had similarities to both squamous and small cell cancers.

And, DJW...this is absolutely the BEST kind of CUP to have. Yes, highly curable. In fact, I belong to another cancer board (unfortunately can't mention it here) that's specifically for CUP, and there are three other people on the board who had exactly the same thing you and I have had...two of them are now 7 and 8 year survivors, and one of them was diagnosed about 4 months after I was, and she is also still alive and well and cancer-free.

The surgery...well, it's surgery, and you'll be sore for a while, but since it doesn't involve the abdominal wall, chest wall, or any organs, it's really not that big of a deal. I didn't even need any major painkillers after the surgery...tylenol was more than sufficient. It felt like I was bruised from the groin to halfway up my side (probably from exploratory probing to make sure the cancer hadn't spread upwards), but it got better each day. It was day surgery, and I went home the same day. Do make sure you've got someone to stay with you for the first couple of days, as you don't feel much like bouncing around, but by day 3 or 4 you should be fine.

In addition to the radiation, you should also have chemo, especially with CUP, since there's no telling where it originated from. You don't want to have radiation over your entire abdomen and pelvis, so you'll need chemo to be sure any stray cells are zapped. Chemo experiences vary widely depending on the specific drugs used, your own individual reactions to them, and how aggressive your doctors are about preventing nausea. Let me know as soon as you've got a plan from your doctors and we can discuss this more.

So glad to hear you had such a good experience at the Cancer Treatment Center. It's always much easier to deal with a major illness when you've got confidence in your doctors.

Ruth

DJW · 07-24-2006, 10:23 PM

Ruth,

You can't imagine how relieved I am after reading your post!

I think it's incredible that we have almost the same unusual cancer. My doctors are almost to the point of accepting the possiblity that some rogue cancer cell was left over in my body from cervical carcinoma in situ 16 years ago. That cancer was lasered - with wide margins and was followed closely for the past 16 years with no evidence of recurrence. Just to be sure they did a deep cervical biopsy on me last month to check and it was completely clear. (They took a lot of tissue - it hurt like heck!)..

I have had some episodes over the year of boil type pimples on my bikini line and my doctor said it may be a mild case of Hidrentitis Suppurvativa (I probably butchered that name). It was when I had one of these boil outbreaks last fall that the nodes began to swell.. I read recently that people with chronic HS

(not going to try it again) have a 50% higher risk of Squamous cell carcinoma! I wonder if there is a connection?

The type of radiation they are going to perform is a new one. It is able to concentrate only on the area of concern so it doesn't mess too much with the good cells... They have this new technology....so I get to skip the chemo. If you look on the Cancer Treatment Center of America's website you will see the new radiation treatments they have available.

I am so relieved that the surgery shouldn't keep me down for very long!

The surgeon said he will have me up walking by the next day - (I thought that was crazy - but now - reading what you went through - it makes sense! ) I'm in good physical condition and I'm glad to know where to expect the pain.

You are an angel!

I told the oncologist in Tulsa about your post - having basically the same thing and how it's the best CUP to have and she agreed! She said she expects it to be cured...not just treatable...

SamQKitty · 07-25-2006, 01:45 PM

DJW,
Maybe it's just me, but I would not be comfortable with not doing chemotherapy. I realize that chemo is no fun, and can have permanent side effects that may even show up years later (so can radiation), but given the uncertainty about where this originated from, I would want to do everything possible to make sure that whatever the origin is, it's zapped, too. Of course, if they are quite certain it's from the HS, then that's a different story, as they will be radiating the area that was affected.

I'm not that familiar with cervical cancer and don't know what types of cells are affected, but.unless the cervical cancer was also squamous cell carcinoma, then I doubt it this came from the cervix.

By the way, some of those awful statistics you may have read on the internet go back years...to the 80's and early 90's, before taxol and taxol-type chemos were in full use. The prognosis for our particular type of CUP is much better now. When I was first diagnosed and researching it, I saw one that said only about 20% of all CUP patients survive 14 months! Scared the living daylights out of me...but it turned out it was a study done in the late 80's. Anyway, the other thing I wanted to say is this...even if statistics say 20% survive x number of years...why not assume you'll be in that good 20%??? That was the attitude I decided to take and, while I'm not saying it helped "cure" my cancer...it sure as heck helped me get through all the treatment! And actually, I do believe that staying positive helps our immune systems fight just about anything.

Ruth

DonohueGirls · 07-25-2006, 05:23 PM

Hi DJW,

Sounds like you're pretty happy with your new doctors - that's great! I'm trying to talk my dad into getting a second opinion, but haven't had any luck yet. I'll have to see if I can find the website for them.

I agree with Ruth... from what I've been able to gather so far (I'm relatively new to this since June this year) that Chemo is almost a given with CUP. They started my dad on it almost a month to the day they removed the tumor in his arm (It took them a few weeks to determine they couldn't find the source).

Good luck with the surgery - keep us posted on your progress.

Lynn

P.S. Ruth... any chance you could give me a hint on how to find the CUP website you were speaking of?