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Old 05-15-2008, 11:02 PM   #1
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Smile Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Just an update.....

I'm still plunking away.. Though I did have to start radiation on that tumor that grew in the surgery site...after I had the radical resection of the inguinal lymph nodes.. That thing got so big and was causing incredible pain!
I had read about this new radiation procedure called the Cyberknife. This is an incredible new technology! It was used on brain tumors that were deemd inoperable but now they are branching out and using it on various types of tumors and cancers. It is not surgery with a scalpal - it's a very precise laser guided high intensity radiation beam that is capable of hitting a tumor from multipile directions while sparing healthy tissue. This is more precise than any radiation technology out there. Anyone with brain, pancreas, lung, liver, etc.. tumors should definitely check out cyberknifesupport.org The treatment usually consists of 1 to 3 visits and the tumor is obliterated! And healthy tissue is safe...

Unfortunately for me however, due to the size of my tumor (7cm) and the fact that it is over my femoral artery, I was not a good candidate for the cyberknife. I opted for the 3D conformal radiation. I've had 11 treatments so far and the tumor feels about half it's size. It had been on a nerve and the pain was gone after the first 3 visits. I have 14 more treatments to go.

I am managing my metastasis with Tarceva and Celebrex and it seems to be holding and diminishing the lung mets.. The pain in the leg has been my biggest problem...the tumor had begun to adhere to tissues on my hip and it restricted my walking and caused the lymphedema to become chronic. Most of that pain is gone now and the lymphedema is resolving itself. I still have pain but most of it is from the lymphedema.. It is so nice to be able to sleep without that darn pain I was having before the radiation...

Just an update to let you all know how I'm doing and to remind you to not give up! Also - don't be afraid to insist on treatments and to say "no" if you feel those treatments are doing more harm than good! No one knows your body more than you - no oncologist, doctor, nurse, no one. Many times people are herded into cancer treatments like cattle - just because that' all that doctor has to offer - not because it's the best treatment for you or the best available treatment. Do some serious research into what is currently available to treat your specific type of cancer.. It could be that your oncologist isn't aware of it yet..and could try it if you give them information on it. "Quality of life" is the most important part of survivng cancer and the treatments...Someday the cancer industry will realize this and make it mandatory...

 
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Old 05-16-2008, 07:59 AM   #2
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Hi DJW,

Good to hear from you, but I am so sorry that you're having such trouble with recurrence.

I know you were extremely reluctant to do chemotherapy, but I'm wondering if you'd reconsider at this point? Don't know if you even CAN do it now, but since it appears that the Tarceva isn't actually preventing recurrence, maybe it's time to think about chemo again. I had such incredible results with the taxol/carboplatin mix, and I've heard from other people with squamous cell cancer that they've also had good results from that mix. It isn't a walk in the park, doing that chemotherapy, but on the other hand, it's not all that horrible...I'd happily do it again if I had to. By the way...my tumor had also wrapped around the femoral artery, and they couldn't remove it all. I did have radiation, too...but it was just as an adjunct to chemo. By the 3rd chemo treatment, what was left of my tumor had disappeared.

At any rate, I'm glad that you had such quick results from the radiation that you've had so far and that you're not in constant pain anymore.

I think of you often and was wondering how you were doing, so was glad to see your post. You are in my prayers, DJW.

Ruth

 
Old 05-16-2008, 02:46 PM   #3
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Ruth,
I was hoping you would see my update.

Yes, the Tarceva is not able to keep the large tumor in check on my thigh - but it has been amazing so far with the lung mets. It buys me time.. My doctors and I have discussed what to do after the radiation treatments. My oncologist is looking for a chemo that would be the most effective - yet not come with the severe side effects. I'm not worried about hair loss...but I am extremely worried about the loss of a functioning immune system and the wasting of body fat and energy... I have seen so many patients not recover from the chemo even when they began treatments early in their cancers...
I'm a peculiar patient in that I am skirting the status quo of treatments and insisting on new combinations and drugs.. If I would have had the radiation treatments that were scheduled shortly after my surgery - I may have been able to knock out this thigh tumor at it's beginning and possibly not have the mets...But - a decision had to be made that January 2007 to have the radiation or have the surgery on the right side where more cancer was found.. The doctors opted for the surgery. My regular oncologist was out of town those weeks and wasn't aware that the plans for radiation had been dropped. She actually thought I had gone through an entire radiation course until I corrected her in March of this year......(Yikes! I know...) I asked her about radiation treatment for the growing tumor on my thigh and she said no - I had already had radiation there...That's when I corrected her and she was horrified! She wasted a year not recommending radiation treatments because she thought it had already been done... I had no idea she had this misunderstanding... I do fault her in a sense - because her field is chemotherapy and she was a bit tunnel visioned to keep trying to get me to have it. If she would have looked at my overall treatment schedule she would have seen there had been no radiation....who knows?

Just another reason why the patient has got to be more in charge of their treatments. Cancer is an epidemic right now and oncologists are seeing hundreds of patients each..Mistakes can and will be made if someone isn't looking at your particular "big picture".

I'll keep you updated on my treatments and let you know which chemo we find for the followup to radiation..

 
Old 05-17-2008, 11:27 PM   #4
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Hey - who started this as a new thread? It should have been attached to my original thread...
Why was no message sent or posted if admin did it?

As an admin on another board..this is unusual to me...a manipulation...

Can someone explain?

 
Old 09-10-2008, 11:22 PM   #5
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Deleted see the next post

Last edited by DJW; 09-10-2008 at 11:27 PM. Reason: posted twice -see the next post

 
Old 09-10-2008, 11:25 PM   #6
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Update....

Well...I must admit I had a wonderful summer! After radiation from April to June in the recurring left inguinal area, I took 8 weeks off to wait for the followup PET scan to see what damage we did to the recurring tumor. I knew almost immediately that the tumor had shrunk when after my 3rd radiation treatment I no longer felt the pain I had been feeling in the front of my thigh and a nerve in my back.. (it was terrible ). I could feel the tumor and it had become squishy and smaller...but it didn't disappear completely. This was using 3d Conformal radiation - 25 treatments total.

In July, I had developed a case of Bronchitis - thanks to my cousin and niece at a family reunion week at the ocean......That launched a month long problem with coughing and shortness of breath. Got that fixed somewhat with steroids and antibiotics...

It doesn't sound like a great summer but it actually was. I can't remember the last time I could go this long without flying across the country for check ups or launching another treatment.. I was just me for most of the summer and it was great!

The recent pet scan revealed that the cancer was indeed still active in my body. The tumor that was radiated was pretty well killed but has a thin line of metobolic activity around it...I have a glowing node in the right inguinal area again and one next to my thyroid...I have some small glowing in the lungs but other areas where the nodules are not glowing and may be dead. The Tarceva did it's job for almost a year but it's time now to try something else. OK..I'm a Charlie Brown Christmas tree - but NOT a tree in Rockafeller Plaza...and this is good.

I had the PET scan performed at the hospital next to the Radiation oncologist I used rather than at the Cancer treatment Centers of America where I usually have it done. Big mistake. The pet/ct scan from the hospital was extremely poor quality (though they seem so proud of the machine..) and the report that came with it was so vague it was completely irrelevent to my current cancer state. Though I gave them all of my recent scans to compare the pet/ct with - they used a scan from 2006.. to compare my current cancer too. My Radiation doc has resubmitted the scan report for a better comparison and I'm waiting for that before I get my next options from Tulsa or locally.

I feel great now that I've got that bronchitis under control and I'm looking for a new therapy. I've seen so many intersting treatments coming out of trials for my type of cancer and I truly am not interested in the standard chemo at this point. It seems as though it simply pushes the cancer around the body and into the brain..That's just my opinion...(ask Ruth.)

I hope all are well.

 
Old 09-15-2008, 11:56 AM   #7
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Hi DJW,

So good to hear from you and that, despite the lingering signs of some cancer you are, generally, doing well. You certainly sound like you've got a positive attitude, and while the jury's still out on how that effects the survival rate, it's pretty definite that a positive attitude helps us get through whatever we need to get through!

I know you've been very much against standard chemotherapy, but I'm not sure what you mean by "It seems as though it simply pushes the cancer around the body and into the brain." As you know, I did have the standard chemotherapy and, so far, it's been a full seven years since I finished all treatment, and I've had no recurrence. I think that's a pretty darned good result!

To me, the best thing about chemo is that it targets ALL the cancer cells in the body, not just the ones that have grown together enough to show up on a PET or CT scan. I guess the Tarceva would have been similar, in that it was an oral medication and so would have been a systemic treatment, but since it is no longer working, I'm wondering if you might reconsider standard chemo?

Radiation, too, can do damage, and sometimes it doesn't show up for years afterwards. Basically, ALL cancer treatments have potential serious side effects, but since not treating isn't an option for most cancers, it's always a risk/benefit evaluation. I'm not even sure that taxol/carboplatin would work as well for you as it did for me, and not sure if you can have it after Tarceva, but I think it's worth inquiring about it at this point.

Whatever you do, DJW, do keep us updated as to your progress. You're in my prayers always.

Ruth

 
Old 01-26-2009, 09:24 PM   #8
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

I have cup squamous cell carcinoma poorly differentiated cells in inguinal nodes. I've had surgery to remove a mass the size of an orange. The adjacent lymph nodes are benign but the soft tissue surrounding the mass have cancer with no clean margin. I live in Hawaii and I haven't started my treatment yet which no-one agrees on. In one of your posts you mentioned some experts in this field. I would appreciate any info. Thank you

 
Old 01-27-2009, 09:54 AM   #9
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Hi mangomom,
Well, DJW may have more info as to experts. I was treated by my local oncologist, whom I've known for over 20 years, as he treated my Mom for breast cancer. He is up on all the latest treatments and protocols, and is both supportive and aggressive in treating not only the cancer itself, but in treating for the side effects that various treatments cause. In other words, he tries to make your life as comfortable as possible while also trying to save your life.

The treatment I went through was threefold...first I had surgery to remove as much of the tumor as possible. Since it was already quite advanced, and was adhering to the arteries and veins in my leg, they couldn't remove all of it, but they did get about 2/3 of it. Next I had chemotherapy...they used a combination of carboplatin and taxol, both of which are quite effective against squamous cell and/or small cell cancers (mine was so poorly differentiated they couldn't be sure which of those two it was.) I was originally scheduled for 6 chemo treatments, 3 weeks apart, but after the 4th treatment they did a CT scan which showed no traces of tumor left, so I didn't have the last two chemo treatments. I did, however, then have radiation treatments to the area where the tumor had been.

I had absolutely no trouble from the radiation treatments (although that area now feels somewhat bruised...probably the result of tissue damage...but not really a big deal.) The chemo treatments weren't pleasant...no nausea, as my oncologist treated me both before and after the chemo infusion with anti-nausea medications, but the taxol does cause quite a bit of joint pain, probably worse in my case since I already had fibromyalgia. I also developed a bit of neuropathy in my fingertips and my feet, but most of that went away after treatments stopped.

The best thing? It's now nearly 8 years since I finished all treatment, and I've had no recurrence! Obviously, there are no guarantees that what worked for me will work for everyone, but I am a big believer that, especially when you don't know where the cancer originated from, a systemic treatment like chemo is more likely to reach wherever it was that caused the initial tumor. In CUP, the cancer didn't originate from where the tumor was, so if you just treat that area, you may be missing cancer cells that could still be metastatsizing. It's always somewhat of a crap shoot with cancer, but I think chemo ups the odds in our favor.

Ruth

 
Old 08-09-2009, 01:01 PM   #10
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Hi, I was just recently diagnosed with Squamous Cell Carcinoma CUP. The cancer is on a lymph node in the groin area. The articles on the internet are not promising that I cried most of the day on Friday. But, my husband found this site and reading your experience at least gives me hope. I had no symptoms what so ever, except for a swollen lymph node in the groin area. When was your cancer diagnosed and how are you doing now.

 
Old 08-09-2009, 07:39 PM   #11
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Hi Marie Delores,

Well, first of all...a lot of information about CUP is actually about ACUP, which is adenocarcinoma of unknown primary. Adenocarcinoma definitely has a worse prognosis than squamous cell. So many of those articles which sound so terrible may have been about ACUP.

If yours has been identified as squamous cell, there's a pretty fair chance that aggressive treatment could knock it out completely. Mine was exactly like yours...although mine was more poorly differentiated, but they did figure it was either squamous or small cell. Both of those types of cancers respond quite well to the taxol/carboplatin routine. Additionally, for some weirdly strange reason, having that type of CUP in an inguinal node seems to be more curable, too.

As you may have noted from my previous posts, I had surgery first. They weren't able to remove all the cancer as it had already spread beyond the inguinal node and was wrapped around an artery and some veins. They removed about 2/3 to 3/4 of it. Then I had the chemo...4 treatments of a carboplatin/taxol combination. Then I had radiation to the specific area where the cancer had been (by the 4th chemo treatment, the CT scans were no longer showing any cancer, but they did radiation just to be safe.) I found the lump in late February of 2001...thought it was just a swollen gland at first. By the time I'd seen my doctor and had surgery, it was mid April, 2001. I finished all treatment in October of 2001, so this year I am celebrating my eighth cancer-free year!

So, while CUP in general isn't one of the most easily cured cancers, CUP that is squamous cell and in an inguinal node is actually the best kind of CUP to have. Your oncologist should discuss with you all possible treatments and what he/she thinks is best for your particular case, but I'd definitely go with more aggressive treatment. The carboplatin/taxol regime isn't a cakewalk, but neither was it all that horrible, and I for one am very grateful that my oncologist was so aggressive in treating me.

Good luck, and keep us posted on your journey through this strange world of cancer treatment.

Ruth

 
Old 08-16-2009, 07:08 PM   #12
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Thank you for all your information. I have been through all the tests and work up and the primary still is unknown. The oncologist I see wants to start with radiation and IV Chemo. The surgeon wants to have the groin lymph nodes removed before starting with the radiation and chemo. I am so confused and basically upset that the doctors have two different order of treatment and I certainly am not able to make a decision. You stated you had the lymph nodes removed prior to radiation and chemo. Did you get conflicting treatment?

 
Old 08-16-2009, 08:08 PM   #13
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

Marie,
How was your cancer diagnosed? Didn't you have the lump removed and then the pathology was done? Is the surgeon suggesting that you have ALL the lymph nodes in that area removed?

My cancer was diagnosed by removal of the tumor and then the pathology studies were done. They knew while they were in there that it was cancerous (I guess they can tell by the looks of it, just not what type.) So they removed as much of the cancerous tissue as they could without destroying any arteries and veins. After that, it took several days for the pathology to be done. Once my oncologist got all the tests done (and they did a whole bunch, because mine wasn't well differentiated and they were trying to figure out what type of cancer it was), then I started the chemo treatments. After I finished the chemo, then I had radiation.

Have you had some surgery already? If not, how did they diagnose this?

Ruth

 
Old 08-17-2009, 05:51 AM   #14
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

I had an exploratory surgery of the right groin lymph node. There were a total of 3 nodes and the smallest one was removed. The largest lymph node is impacted and was not removed as the surgeon suggested I see a surgical oncologist to remove the remaining 2 nodes. The diagnosis was: Poorly differentiated metastic squamous cell carcinoma with unknown primary. In the meantime I was referred to an oncologist who favors treating the nodes with radiation to shink them and also with Chemo. So here is sit with two difference means of treating the cancer. Remove the nodes first then undergo radiation and chemo, or radiation and chemo first and then remove the nodes after.

 
Old 08-17-2009, 07:16 PM   #15
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Re: Update from DJW: Squamous Cell Carcinoma-Unknown Primary-inguinal nodes

I see. Well, I'm not sure which would be best. On the one hand, if one of the nodes was "impacted", they may not be able to get most of it out, so it would make sense to try to shrink it with chemo and radiation. Or, possibly, you might want to do part of that...either chemo, then surgery, then radiation or, more likely, radiation, surgery then chemo. I'd make the appointment with the surgical oncologist to discuss this, ask both doctors to explain their thinking on this (the surgical oncologist and regular oncologist), then go with whatever feels right to you.

Often times there is no one perfect way to go, and you just have to listen carefully, ask a lot of questions, and then go with your gut feeling. I'm hoping that the surgical oncologist and regular oncologist talk to each other and work together so that, whichever course you end up choosing, they'll both be okay with that.

It may not make all that much difference which way you go, but either way, you are definitely going to need both chemotherapy and radiation.

We really should move this all to a new thread, as we've inadvertently hijacked DJW's original thread. If you don't know how to do that, I'll start a new thread next time I reply to you.

Meanwhile, please do keep me posted. I'll be thinking positive thoughts for you and praying you have as good an outcome as I've had. You have much to get through, but hopefully you'll be posting on here one day to tell other people that yes, you have survived cancer too!

Ruth

 
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