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Thread: Squamous Cell LC with occult primary

  1. #1
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    Squamous Cell LC with occult primary

    I am a 55 y.o. woman and I have read the sticky about lymph nodes and lymphoma. That said ...

    This weekend I felt a large (about 3cm), hard, painless lump above my right collar bone, close to my neck. It felt familiar to me, as if I had felt it quite a few times before, without really thinking much about it. I assumed it was a bone. But for whatever reason, I decided to check out the other side of my neck and was surprised that find that there was no corresponding lump on the other side.

    I took a look online (because I am a curious, not completely un-neurotic human with access to Google) and saw that it could be a swollen lymph node and that a large, hard, painless lymph node could be a sign of lymphoma. I also remembered that in the not too distant past, I had had long-term treatment with an immunosuppressant drug whose serious long term side effects included possible lymphoma (I think taking this drug increased one’s risk 3-5x.) But lymphoma is uncommon among people my age, so even an increased risk of 3-5x about the expected rate may not be that much.

    I realized that since the lump was visible (once I knew what to look for), I could go back through my old photos and see how long I had had it. At least 8 to 10 months, it turns out.

    I have had no other possible lymphoma symptoms except itching. I don’t remember exactly when the itching began and it has mostly been very mild, but it does seem to intensify from time to time. Sometime last month it got so bad I thought I should really see a dermatologist to figure out what is wrong with my skin. But then it lessened again and it is back to being mild. However, I have also read that one of the unusual symptoms of Hodgkin’s lymphoma is an intense negative reaction to alcohol. And that is exactly what happened to me about three years ago (I stopped drinking shortly thereafter). I remember that all of a sudden I felt unwell and felt intensely itchy all over my body — even my eyeballs itched (how is this possible?). I knew that itching is related to jaundice and alcohol affects the liver, so I looked to see if I had jaundice and I didn’t see anything at all. It was a mystery illness. And maybe still is, but I just read about someone with Hodgkin’s lymphoma who had a nearly identical reaction to alcohol.

    In any case, I saw my PCP today, and he said that I did indeed have a swollen lymph node and that it did indeed seem suspicious for lymphoma. He said I should see a hematologist ASAP. He got me an appointment with someone he recommended for early next week.

    I asked him if there was any chance it could not be a malignancy —- that the lymph node could have swollen due to an infection and simply hardened instead of returning to normal sized. He said: “That is possible in the case of certain infections,” but that I really needed to more testing done ASAP. He also said I shouldn’t worry too much because if it does turn out to be lymphoma, there are a lot of effective treatments out there now.

    I suppose am mainly writing for self-therapy. But if anyone has any recommendations, insights, words of reassurance, etc. it would be appreciated. Thanks!

  2. #2
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    Hello Melisande,

    You seem to have done what needed to be done, and so has your PCP. A week's wait to see a hematologist is not too long, and at this rate you should soon enough know what you are dealing with. Considering the apparent duration of this swollen lymph node and the mildness of symptoms, I would expect it, IF it turns out to be lymphoma, to be an indolent form.

    All that remains for you to do is to keep your cool and let the hematologist take charge of the diagnostic process.

    Do keep us posted on your results.

    PBL

    BTW - What came out of that pancreatic cancer scare a couple of years ago? Have you discussed it with your PCP? Any link with your current issue?
    Last edited by PBL; 06-25-2019 at 07:52 PM.
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of this. It is scant comfort to know that I found the first of many tumors at age 55. Having said that, it will be counterproductive to research anything until and unless you have a firm diagnosis. Once the condition is identified, knowledge then becomes power. Up to that point, knowledge only misleads and produces worry. There are various tests which can be done, very few of which are truly helpful. If doctor thinks it appropriate, having that node out for pathological examination is the only method of determining if it is malignant or not. Needle biopsies, although frequently recommended (they are quick and inexpensive), are not all that useful and can provide false negative readings. If that node is in a reasonably good location for excision, it is best to have it out.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  4. #4
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    Thumbs up

    @PLB — I too was thinking that — at least there is no way this is an aggressive malignancy. That in and of itself is staving off any potential panic.

    @po18guy. Yup, that is I have read. Excisional biopsy is the only way of truly knowing what’s what. Blood tests, FNA & core biopsies can all give false negatives. Actually, that is also what my PCP was trying to explain to me in the office today.

    Thanks for the responses. One way I am trying to keep calm is remembering other times I was absolutely sure I had a malignancy or a tumor and it turned to be something else. The first time, I thought I had an acoustic neuroma, but it turns out I had autoimmune inner ear disease. The second time I was worried about pancreatic cancer and it turned out I had chronic drug-induced pancreatitis. Actually, you know what? This line of thought it not actually helping me feel better. Best to just stop thinking about health issues until next week.

  5. #5
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    Quote Originally Posted by Melisande View Post
    Actually, you know what? This line of thought it not actually helping me feel better. Best to just stop thinking about health issues until next week.
    Good plan!

    Let us know when you do have a diagnosis.

    Best of luck to you.

    PBL
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  6. #6
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    Quote Originally Posted by PBL View Post
    Good plan!

    Let us know when you do have a diagnosis.

    Best of luck to you.

    PBL
    I just got off the phone with my Mom and she suggested that if I am going to have surgery to have the lymph node removed (to be biopsied), I should start thinking now about finding a really good surgeon. The node is not actually on my neck, but it is very close (actually it might be on the neck, depending on how “neck” is defined) and I feel really sensitive about that area, given that I am a singer. Even if the structures involved in swallowing and phonation don’t really run any serious risk of damage, I will still need to think about how neat (or ugly) the scar is, since it will be easily visible.

    So, how do I go about finding a good surgeon? The only other time I had surgery (abdominal), I just went with the recommendation of my GI specialist without ever questioning his opinion or shopping around. It worked out well, but now that I look back on it, I think I might have been both naive & lucky.

  7. #7
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    Your appointment with the hematologist you've been referred to is only a few days away. Why not wait and see what s/he thinks after reviewing your case and examining you? If/when s/he decides that an excisional biopsy is in order, you might voice your functional and esthetic concerns.

    Shopping around for surgeons before your first hematologist's appointment just seems a bit premature.

    PBL
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  8. #8
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    Thanks again for your words of wisdom.

    All the more useful because I am now sick (again!) with my 3rd head/chest cold so far this calendar year. I usually don’t get worked up about a stupid head cold, but it seems like a lot. Plus, I have been getting fairly frequent mini-colds. Up until now I had assumed that I was developing allergies, but was only going to go to an allergist if they got worse. (I hate going to the doctor). Now I’m wondering if all the colds and mini-colds are insidious symptoms.

    Oh yes, I am becoming aware of exactly how much I am itching and scratching myself.

    Time will tell ...

  9. #9
    Super Moderator Top User po18guy's Avatar
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    Since this is your third cancer scare, and you are worried about colds - which half of the nation still has, is it possible...?

  10. #10
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    Well, of course it’s possible that it’s not cancer. I do have a hunch though that whatever it is is something serious that will greatly impact my life .... just like the last two times I had a cancer scare.

    Just because it doesn’t turn out to be cancer, doesn’t make it OK. In fact, if my first cancer scare had actually been cancer, it would have been better for me since an acoustic neuroma would have had better prognosis (and probably outcome) than what I wound up with. Acoustic neuromas are almost always unilateral, so at most you go completely deaf in one ear. You get the surgery and boom, you’re done. It rarely metastasizes or returns. On the other hand, autoimmune inner ease disease (which I turned out to have) is progressive and bilateral. There is treatment which can put it into remission, but there is no cure and you never know when it can become active again. In only three months of active disease, I went from have perfect hearing to being legally deaf in one ear and hearing impaired in the other.

    Also, to move on to the second case, although chronic pancreatitis is not pancreatic cancer, it is far, far from a walk in the park. I am still dealing with it and will deal with it probably every single day for the rest of my life.

 

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