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Thread: Diagnosed with Salivary Gland Cancer (SCC)

  1. #1

    Diagnosed with Salivary Gland Cancer (SCC)

    Hi all, I am new here, and I have a few questions.
    My father was diagnosed about a month ago with squamous cell carcinoma of the salivary glands. There is a very large tumor on the left side of his neck (more than 4cm) and is still growing (somewhat fast). What I didn't know, is how long someone has to wait after a cancer diagnosis. We are currently waiting for more mri's and tests to see where if the tumor has spread.

    One question I have for you all, is do you remembering having to wait (what seemed like) a very long time to just see a doctor?

    As I said, the tumor is growing very rapidly, and could very soon begin to obstruct his eating and breathing. I never thought sitting around waiting to be seen would be such a struggle. We don't know what stage it is, where it's spread.. and my research on the internet I think is only making the experience worse.

    One question I also have is, what do people do in a radiology appointment? My dad has one next week, but we are confused, because we haven't been told what path of treatments they are planning to take. So why are we having an interview with a radiologist?

    Thanks for your time

  2. #2
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Hello. Welcome. I am so sorry to read about your father's diagnosis.
    Unfortunately yes, it can take ages to see a Dr though I would think that as he is diagnosed he would get in sooner if they thought it was very aggressive.
    I took 8 months to diagnose.

    First radiation appointment is usually to inform you of what will happen, how many rads and for how long, doing the preliminary stuff prior to starting it.

    If there is an appointment made for your father it means that this is the direction they wish to go at this time. Radiation will shrink the tumour. It would have been better if they had told him that instead of leaving you all in the dark.

    It seems to me things are moving along as they should as he is being seen next week.

    Good luck.
    We are here for you.
    Please keep us updated if you wish to.
    I have no idea whether there will be chemo as well. All questions need to be answered by his oncologist.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    Administrator Top User ChemoMan's Avatar
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    Jun 2008
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    Hi SS

    One question I have for you all, is do you remembering having to wait (what seemed like) a very long time to just see a doctor?
    Oh yeah ....and the wait seemed like purgatory. patience is needed.

    One question I also have is, what do people do in a radiology appointment?
    Ask Dad after he has had it Don't worry all will be well.

    Keep us informed if you can and I wish Dad Good Luck
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  4. #4
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Hi solemnlyswear and welcome to the place no one wants to be but many come to value. How long it takes to move into a treatment plan is somewhat dependant on what country you are in but, given the diagnosis you have, it should move along fairly quickly.

    From what I can find, SCC of the salivary glands is very rare (about 1.6% of all cancers of that tissue). Here is what I found on a pathology website about it:

    True salivary gland primaries of squamous cell carcinoma are very rare
    Most tumors of parotid gland are metastases to intraparotid lymph nodes from primaries in oral cavity, upper aerodigestive tract or skin
    May represent malignant component of malignant mixed tumor or high grade mucoepidermoid carcinoma
    Rapid growth with infiltration of surrounding structures, regardless of origin
    Treatment: radical surgery, radiation therapy

    Given the tendency of this cancer to spread rapidly, I would be contacting the Case Manager, the doctor and anyone else who can move things along. Is the purpose of the radiation to reduce the tumor size so that surgery can be performed more effectively? What side effects should be anticipated and what is the best way to manage them? Is surgery part of the treatment plan? If not, why not? Given its rarity, has a second opinion of the tissue samples been requested, assuming that an actual biopsy was done as part of the diagnostic process? If one wasn't done, how was the diagnosis confirmed?

    The meeting with the radiation oncologist is a good first step. You should expect a discussion of the treatment plan and should come out of the meeting with a schedule to map the radiation field. Given the location of the tumor, your Dad will probably be measured for a radiation mask. Will your Dad allow you or another family member to go to appointments with him? It is a good idea if you can arrange it. Try to write all your questions down before the appointment and expect real answers. It is always good to remember that doctors work for patients, not vice-versa.

    Feel free to post back and good luck to you and to your Dad. We are here to answer questions, provide support or just make room for you to vent.

    Good health,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.


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