I had swollen lymphnodes in my groin area. I just found out today that I have a very rare cancer where nothing else in my body is affected with cancer cell other than the lymphnodes. They dont even know how to treat it. So they are gonna follow the same protocol as if I have cervical cancer. I`m terrified.
How did they determine that you have cancer? Did they do a needle biopsy, or have you had surgery? I'm guessing that what you have is loosely called "CUP" or, Cancer of Unknown Primary. It's very important that they remove as much of the tumor as is possible and do a very thorough biopsy. From what you wrote, I'm not sure why they decided this is likely cervical cancer but if a complete biopsy hasn't been done, you need to have that done before you start treatment.
FYI, CUP in the groin area is usually one of the more curable types of CUP, since it is rarely an adenocarcinoma. I had CUP in 2001, had surgery, the pathology determined that the cells were poorly differentiated but that there were similarities to both squamous and small cell cancer, and I was treated with a protocol that is used for both types...Taxol and Carboplatin. After that I had radiation to the groin area, since they couldn't get all the cancer out with surgery. I finished all treatment in October of 2001, and there have been no recurrences since then.
Also, during my internet search for support around this rare cancer, I found three other people who had the same or similar type of CUP, originating in the groin lymph nodes, and all three of them had the same or similar treatment as I did, and all three of them are still with us, more than 10 years later.
Try to stay positive, as that will definitely help you get through the process. But do ask questions and definitely feel free to get a second opinion. Scary as it is to be told you have cancer, delaying treatment for up to a month while you get a second opinion (f you need to) probably won't hurt. The most important thing with this type of cancer is to make sure it's identified as much as possible - that's where the pathology comes in...even if it just has similarities to something, but isn't definite, that's a good guide as to treament. And remember - as scary as this is, and as unpleasant as treatment can be, depending on what they use, it's definitely do-able and survivable.
Ruth. Are you still on... I would love o post with you...I have squamous cell....two nodes in groin taken out....pet can shows two nodes in iliac area...no primary yet......so scared..love to get some more info....thanks cindy
Believe it or not, squamous cell is GOOD! It's highly curable. Do you have a treatment protocol yet? If it were me, I would go for both radiation treatment to the affected area(s) and chemotherapy. It can be a bear to go through the chemo, but it is, IMHO, well worth it...I'm still here 11 years later, and I know of at least one person who opted not to have chemo and didn't have more than a few months of remission.
Do post back, Cindy, and let me know what your doctors are saying...what are they recommending (including the type of chemo), etc. I just know you can beat this!
Thanks Ruth.......this is though....I did chemo and radiatin 23 yrs ago and it was awful!! I threw up for 8 hrs every time I got the chemo.....I did the let scan, MRI pelvis, cystoscope of bladder and now a MRI of brain tomorrow.....I think the dr is doing it cause I'm so nervous.......so they haven't found a thing yet.. Not sure if they are doing colon test. So yours was just one node in the groin? I'm nervous cause it's in the iliac area too.....and is it spreading while they do all these tests? No decisions. My oncologist set me up with a gyn oncologist at Dana Faber......what hospital did you go to.? I'm so anxious it's taking so long and nervous about the chemo for the second time......is any blood work helpful.......WBC was 9.3 ESR was 14 RBC 4.4 ....I have all of it.....anxious to hear back from you.....in a panic over this brain MRI...thanks so much. Cindy. Ps mine is moderate squamous cell....I read all negitives things like if it went from groin nodes to iliac it will go on to liver and lungs... Yours was not squamous and it was only in groin?
Last edited by Cindy927; 07-25-2012 at 05:02 PM.
Reason: Forgot something
To D2 beau,
Are they thinking it is a type of lymphoma? That is the type of cancer that affects the lymph nodes. Did they do a needle biopsy or take out a node to biopsy it? The latter provides more tissue and a more sure evaluation of the type of cells. Lymphomas generally respond well to chemo. If there is any question on the pathology, you can request a second pathology opinion from someone in your area or even have the slides sent to the Mayo clinic for a second look. Please do whatever will make you feel most comfortable going forward so you can have confidence in your treatment and a positive outlook. They should be able to give you the name of this cancer. It sounds like it originated in the lymph nodes, not spread from somewhere else.
Mine was actually poorly differentiated, but it had similarities to both squamous and small cell cancers, so they treated it with chemo that works for both. No, mine was not just confined to one lymph node...it had spread beyond the lymph nodes into adjacent tissue - along the main femoral artery in the leg, and upwards towards my lower abdomen. It was considered third stage, and they took out a lot of it, but couldn't get it all.
As for the chemo...well, first of all, let me say that I'm so sorry that you're going through cancer yet again, but they have much better ways of preventing nausea now. In fact, I had absolutely NO nausea at all. My oncologist treated me with an IV anti-emetic prior to infusing the chemo, and also gave me pills to take for the next three days. The IV anti-emetic that he used on me is called Zofran, but there are others that are equally effective...anzamet and kitril are two others. My onc also gave me compazine suppositories just in case, but I didn't need them. I was treated at Norwood Hospital which was convenient because it's only about 8 miles from where I live. I might've gone into Boston, but I already knew the oncologist in Norwood because he treated my mom for breast cancer, and he kept her alive with 3rd stage breast cancer for 8 1/2 years, so I knew he was good. I was very lucky that way, as I didn't have to start in with a strange doctor, and my oncologist is VERY aggressive about preventing side effects such as nausea, constipation, etc.
I suspect your doctor is doing all these tests to determine exactly where the cancer stems from, but at some point soon, they'll need to start treating. Scary as this is, please keep in mind that you've survived another cancer for 23 years!!! Stinks to have to go through it again, but as I said before, you can do it.
Have you had surgery yet? If not, I hope they are planning to do a biopsy of the tumor, rather than just assuming it's cervical cancer. Tumors in the groin are often not lymphoma and not any kind of identifiable cancer, but a biopsy will tell what type of cell it is, or at least what type of cell it resembles, and that is how they determine the course of treatment.
Please post back to us when you can and let us know what's going on. I'll be thinking of you and hoping for a good outcome.
Sorry I was posting on your thread...I am also new and didn't understand how to use these threads....but I did post to ask you what they thought you had.....I had hodgkins lymphoma 23 yrs ago now squamous..go figure . Please post when you can. Cindy 927
I seem to have joined this small club! I'm so glad you are here. I have had every test there is to take and have no other involvement outside of my left inguinal node. Yeaaa! I am about to start treatment, and believe I will opt out of the chemo. I do know that the Dr prefers to radiate and do chemo before surgery. I'll have to decide this next week. Any feedback? SamQKitty are you still participating here? I have been so encouraged by your older posts, thank you!
It's my opinion (and admittedly, I'm not a doctor!) that it is crucial to determine what type of cancer cells you're dealing with before deciding on the type of chemotherapy. If they've done needle aspirations of the tumor and they have some info on the cancer, then I guess chemo and radiation before surgery might be an option.
As for opting out of chemo, I certainly don't recommend that, because if it's not hodgkins or some other type of lymphoma (in which case you'd need chemo anyway), and if they don't know exactly where the cancer originated, then surgery and radiation JUST to that area is probably going to miss the primary site of the cancer. And that primary site, while too small to show up on all the tests, could still be metastasizing to other parts of your body,. It would truly be a shame to go through surgery and radiation and then have the cancer show up (and possibly more aggressively) somewhere else.
There are some cancers for which skipping chemotherapy is fine, but CUP is not one of them.
Hi there and thank you for replying- you're amazing.
I wrote a long, detailed response, but had gotten on the phone and when I tried to post I was logged out.... sorry.
My lymph node is filled with raggedy, deranged Squamous Cells. SCC is what the biopsy showed.
I will go talk to the Chemo Dr., but I'm just not convinced. I was told that the Cisplatin & Toxol and radiation and surgery protocol was 'well tolerated' by 38 out of 40 patients, and that 15 resulted cancer free... I wasn't told what happened to the other 23. Do you have contact with the others doing fine that you mentioned? I would like to have surgery, but the surgeon thinks he would like to eliminate chances of the cancer cells getting loose, all there blood vessels, .. I don't know.
Thank you for being here.
Good health is mustering a robust attitude to aggressively combat any malicious threats to our well-being.- Daisaku Ikeda