squamous cell carcinoma of right inguinal lymph with unknown primary

kayan
kayan Member Posts: 4
edited March 2014 in Rare and Other Cancers #1
Has anyone experienced this type of cancer? What kind of treatment have you had? One radiation oncologist recommended 6 1/2 weeks of radiation to both groins, the vulva and anus and chemo weeks one and five (treating as anal cancer although all tests are negative); a well-known clinic said to do that or just "observe". Two very opposing plans. So I went to another radiation oncologist on Friday - he suggested treatment but more conservative than the first doctor and said that, with CT scan guidance, side effects could be minimized. The first doctor had said I would have lymphedema to both legs forever, anal concerns, vaginal stenosis and would probably fracture my right hip. Right now I feel quite well, just a little tired at times. I had surgery to 'de-bulk' the right groin on April 8. I got a lot of information from the American Cancer Society (they phoned!) and from NCCN. The prognosis is very poor although "improved" when it has only been found in the lymph in one groin. I did have a PET scan which only showed the one area of cancer but have read that it is only accurate for cancers 8mm or bigger. So the primary cancer could still be lurking around somewhere. Because I went for another opinion, I now have to get back in the system to start radiation in my own city. However, I don't regret following my gut and going for another opinion instead of going with the first doctor's advice. Hurry up and wait....This cancer is rare but if you have any experience with it, I would appreciate hearing from you.

Comments

  • iswive
    iswive Member Posts: 1
    #2
    Do you have Bartholin's Gland Squamous Cell Carcinoma
    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
  • DARLENE1
    DARLENE1 Member Posts: 3
    #3
    iswive said:

    Do you have Bartholin's Gland Squamous Cell Carcinoma
    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

    Squamous cell cancer of the bartholin gland
    I just found this website and you are the first person I have found that had the same type cancer that I had. I was diagnosed in 2007 and underwent both chemo and 30 radiation treatments and now I am in full remission and have been since Dec 2007. How are you doing? Have you completed treatment?
  • DARLENE1
    DARLENE1 Member Posts: 3
    #4
    squamous cell
    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.
  • java1990
    java1990 Member Posts: 1
    #5
    Squamous Cell Carcinoma Groin Lymph Nodes Unknown Primary
    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
  • Kcl0930
    Kcl0930 Member Posts: 1
    #6
    Andeo carcinoma with unknown primary
    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?
  • tkeippela
    tkeippela Member Posts: 1
    #7
    squamous cell carcinoma of left inguinal lymph with unknown prim
    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
  • during
    during Member Posts: 1
    #8
    Kcl0930 said:

    Andeo carcinoma with unknown primary
    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?

    Andeo carcinoma with unknown primary
    If you are so frustrated and need to know more, I suggest you get together copies of your scans, reports, etc. and have a consult with some other oncologist at a different center.

    Be sure to go to an oncology center at a major university, preferably one designated by the NIH, A little research might lead you to someone who specializes in carcinomas of unknown primary. Even if s/he is a distance from where you live you are only going for a consult, not an ongoing weekly treatment program.

    I luckily live in an area with abundant medical resources and the doctors who directed my treatment saw positive results early on. If you are not similarly situated, it would be worthwhile to travel - however far it may be - to meet with a specialist in your cancer.

    Best wishes for the future,
    Barbara
  • cancersucks4ever
    cancersucks4ever Member Posts: 1
    #9
    java1990 said:

    Squamous Cell Carcinoma Groin Lymph Nodes Unknown Primary
    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

    Squamous cell carcinoma inguinal lymph nodes-unknown primary
    I found a swollen lymph node in my right groin in early spring of 2009. A biopsy done after surgical removal of the node revealed squamous cell carcinoma. I was given a PET scan at that time which was clear, as well as a very thorough pelvic exam even though I've had a complete hysterectomy.
    Almost exactly two years later, I discovered another swollen node in the same location with the same diagnosis after surgical removal. And the surgeon dilated my anus to visually check for any abnormalities...none. This time the testing was more aggressive...PET scan, CT with contrast and colonoscopy. All were clear. My oncologist recommended surgical removal of the remaining lymph nodes in that area, radiation, chemo, or a combination of all three. After discussing the side effects and based on my past experience with chemo (my husband died from Acute Myeloid Leukemia 10 years ago and the chemo involved with that is horrendous!) I decided not to have any treatment, at least for the time being. Instead, I became much more fanatical about what I eat...no chemical preservatives, artificial flavors or colors, no MSG, no GMO foods, etc. At the same time I increased my intake of immune-boosting and cancer-fighting foods such as blueberries, asparagus, broccoli, etc. as well as using as many organic foods as I can find. I also began taking Del-Immune V which is a type of lactobacillus that enhances the immune system.

    My logic behind my decision is this: The lymphatic system is a part of your immune system and the effected lymph nodes were doing their job ("catching" the squamous carcinoma cells and preventing them from metastasizing further) so I could see no purpose in removing or radiating them. Instead, I decided to "help" them by having a healthy diet.

    So far, so good. It's been a year and a half since the second lymph node was removed and no more swollen lymph nodes yet. Time will tell, I suppose.







































    9
  • Nomadita
    Nomadita Member Posts: 1
    #10
    tkeippela said:

    squamous cell carcinoma of left inguinal lymph with unknown prim
    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

    Anybody out there?

    Me, too. I have squamous cell inguinal lymph node tumor, Unknown Primary, although no other site has been discovered after extensive testing. Getting radiation, guess I'll have surgery after that. Anybody out there still that has posted earlier?

    Thank you so much!

  • dixie27
    dixie27 Member Posts: 1
    #11
    Nomadita said:

    Anybody out there?

    Me, too. I have squamous cell inguinal lymph node tumor, Unknown Primary, although no other site has been discovered after extensive testing. Getting radiation, guess I'll have surgery after that. Anybody out there still that has posted earlier?

    Thank you so much!

    Hey

    My sister was diagnoised with the same thing. She has undergone 2 rounds of chemo & 1 round of radiation. Tumor has now invaded bladder. complicated by Factor 5 Liedon with dvts. Somebody please tell me is there other treatments like Proton that will help? Please somebody respond!

     

  • GaMeof5
    GaMeof5 Member Posts: 5
    #12
    Nomadita said:

    Anybody out there?

    Me, too. I have squamous cell inguinal lymph node tumor, Unknown Primary, although no other site has been discovered after extensive testing. Getting radiation, guess I'll have surgery after that. Anybody out there still that has posted earlier?

    Thank you so much!

    New to posting on this website but...

    ...I, too had a squamous cell inguinal lymph node tumor. (May 2012, finished treatment December 2012) I also had seven other lymph nodes that were cancerous in my abdomen and pelvis, which placed me at a stage 4.  I just posted on this website so I won't bore you with all the details.  How are you doing?  Have you heard from anyone else who posted on this discussion board/website?  I know this type of cancer is rare so I was hoping to find others with the same cancer and get some information on late effects of treatment.

  • kmachayesxx@gmail.com
    kmachayesxx@gmail.com Member Posts: 1
    #13
    Nomadita said:

    Anybody out there?

    Me, too. I have squamous cell inguinal lymph node tumor, Unknown Primary, although no other site has been discovered after extensive testing. Getting radiation, guess I'll have surgery after that. Anybody out there still that has posted earlier?

    Thank you so much!

    anybody out there

    I'm here...treated in 2011 for SCC  CUP right groin. How are you doing?

  • GaMeof5
    GaMeof5 Member Posts: 5
    #14
    @Kmachayesxx

    Kmachayesxx,

    I'm doing well, this past December was 2 years post treatment and 2 years of NED scans.  YIPPEE!  My primary tumor was never found but due to the location of the 8 involved lymph nodes, I was treated as if I had cervical cancer.  I had two surgeries, 30 radiation treatments along with 6 (ended up only getting 5 due to blood counts) rounds chemo, then a month to recover, and then four more rounds of chemo.  From 1st surgery to last chemo was almost exactly 7 months. 

    Aside from "late effects" of the treatment, I'm learning to except the "new normals" in my life.  My oncologist at Seattle Cancer Care had me make an appointment with their Survivorship Clinic last summer so between that, and reading the discussion boards on this site, it's been reassuring to know that my "new normals" are actually normal following pelvic radiation and chemo treatments.

    How are you doing?  What type of treatment did you have?

    GaMeof5 

  • EJG
    EJG Member Posts: 6
    #15
    GaMeof5 said:

    New to posting on this website but...

    ...I, too had a squamous cell inguinal lymph node tumor. (May 2012, finished treatment December 2012) I also had seven other lymph nodes that were cancerous in my abdomen and pelvis, which placed me at a stage 4.  I just posted on this website so I won't bore you with all the details.  How are you doing?  Have you heard from anyone else who posted on this discussion board/website?  I know this type of cancer is rare so I was hoping to find others with the same cancer and get some information on late effects of treatment.

    I am glad to hear you are

    I am glad to hear you are doing well. I have had a surgery to remove a lump the size of a baseball in my left groin. 

    Am waiting for the tube to be taken out to start radiation and chemo.

     

  • EJG
    EJG Member Posts: 6
    edited April 2018 #16
    java1990 said:

    Squamous Cell Carcinoma Groin Lymph Nodes Unknown Primary
    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

    squamous cell cancer in the vulva

    I am going thru the same thing. Let me know how you are doing now. I am scheduled for 5 weeks of radiation and 5 chemo treatments. email me at <Content Removed by CSN Support Team>.

     

  • EJG
    EJG Member Posts: 6
    edited April 2018 #17
    I am going through the same

    I am going through the same thing. Squamous cell. I had to have a partial radical vulvectumy on my left vulva 3 times. One year later I found a lump in my left groin. Even though the biopsies had came back negative in the lymph nodes the year before, it had come back and matastisized my left groin lymph nodes. The on/gyn did surgery and removed a baseball size lump from my left groin. However it had attached to the femual vein and nerves and could not get it all. My drain tube from this surgery is going on 6 weeks and still putting out 170 cc a day. This morning a felt another long 3 or 4 in. lump right below the drain tube. Waiting to hear from my doctor what the next step is. But I'm guessing another c t scan and surgery.  It could be fluid build up but I'm skeptical as my leg is feeling number. Anyone out there that can relate to this? Send me an email at <Content Removed by CSN Support Team>. Would appreciate some information on your recovery.

     

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