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Thread: Salivary gland cancer

  1. #1
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    Salivary gland cancer

    Hello all

    I had surgery back in September to remove a small lump in my parotid gland and, after the hospital had a chance to review it, I've been informed that its a low grade cancer (basiloid carcinoma).

    This was a shock because I was assured all along that it was highly unlikely, but I can see from subsequent research that this is a very rare cancer, so not surprising that the surgeon thought it unlikely. Plus, when it does turn out to be cancer, the patient is usually male and over 65. I'm female and 35!

    Anyway, I start a 6 week course of radiotherapy in a few weeks (MRI and CT this week too) and just wondered if anyone has been through similar, and has any advice? I know people react in different ways, but I'm preparing as best I can by researching the possible effects so that when it happens I'm not taken too much unawares!

    I do know there's a chance I'll lose weight due to changes in saliva and taste, not to mention a bad throat, so at the moment I'm eating lots to put on a bit of weight before I start. That's my excuse for the extra chocolate anyway

    Just after some words of wisdom, or a hello from anyone who's been through similar.

  2. #2
    Administrator Top User Kermica's Avatar
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    Hi Clare26 and welcome to the place no one wants to be but many coe to value. There are many people on these boards who have had radiotherapy to the head and neck, though I am not one of them. I am sure your doctor has provided you with information regarding possible side affects,c orrect? Are you having a mask made, whcih I undersstand is common for this therapy?

    I have had radiation, just to a couple of other body areas. Skin irritation can occur, which can be treated very well with a 99% aloe gel (at least, that is what I used). I know there can be issues with sores in the moth and that eating can become challenging but there are many ways to counter both of these possibilities. Hopefully, someone more experienced than I will pop in and provide more input for you. If not, I will check on you and do some research if needed. Good luck with everything and again, welcome, Clare.

    Good health,

    kermica
    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.

  3. #3
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    Quote Originally Posted by Clare26 View Post
    Hello all

    I had surgery back in September to remove a small lump in my parotid gland and, after the hospital had a chance to review it, I've been informed that its a low grade cancer (basiloid carcinoma).

    This was a shock because I was assured all along that it was highly unlikely, but I can see from subsequent research that this is a very rare cancer, so not surprising that the surgeon thought it unlikely. Plus, when it does turn out to be cancer, the patient is usually male and over 65. I'm female and 35!

    Anyway, I start a 6 week course of radiotherapy in a few weeks (MRI and CT this week too) and just wondered if anyone has been through similar, and has any advice? I know people react in different ways, but I'm preparing as best I can by researching the possible effects so that when it happens I'm not taken too much unawares!

    I do know there's a chance I'll lose weight due to changes in saliva and taste, not to mention a bad throat, so at the moment I'm eating lots to put on a bit of weight before I start. That's my excuse for the extra chocolate anyway

    Just after some words of wisdom, or a hello from anyone who's been through similar.
    Clare -- I'm joining you with this. My surgery is thurs. How are you doing? What particular challenges are you dealing with on the rad effects? I am certainly not looking forward to this.

  4. #4
    I suggest that you read through some of the other threads to learn about how people are dealing with the effects of radiation. While there are many different kinds of cancers here (my husband's cancer was at the base of his tongue), I think what they all have in common is that people are receiving radiation to the head and neck area. It is a very difficult treatment, and the more you read and prepare yourself, the better.

  5. #5
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    Quote Originally Posted by retiredinhawaii View Post
    I suggest that you read through some of the other threads to learn about how people are dealing with the effects of radiation. While there are many different kinds of cancers here (my husband's cancer was at the base of his tongue), I think what they all have in common is that people are receiving radiation to the head and neck area. It is a very difficult treatment, and the more you read and prepare yourself, the better.
    That's what I've been doing and why I said in the previous post that I am sure not looking forward to this. Sounds like a very sore throat and liquid diet are in my near future. All the $$ spent on research and the best treatments they have are still ones that do about as much damage as they do good. Rad or chem ...both tough to go through. I'm concentrating on my diet too. It's something I can do to help row the boat.

  6. #6
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    so it is now 3 months later....my tumor turned out to be centered at the base of my tonque and spread to the parotid ....had a mask done - went through 33 rad treatments and 5 chemo. At home now in recuperation and will have surgery to remove remnants sometime in the near future. The #1 thing I did right ===WENT TO MD ANDERSON CANCER CENTER in Houston. From my first appt to today it is so obvious that the Drs I have are the pros from anywhere. One of them has to schedule his appts with his trips to Dubai to treat his patients over there. (they pay him to come there and make donations to Houston as well) Not having a lot of fun with the pain mgmt and all....but beats the alternative. I now feel like I will have time to finish building this homestead. We all know we all have to go sometime...but at 63 I just wasn't ready yet.

  7. #7
    Administrator Top User Didee's Avatar
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    So glad you are doing as well as you can be. Keep us posted!
    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

  8. #8
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    Hi Claire Iím glad to hear youíre well! Would you be able to tell me symptoms you had before your diagnose?

  9. #9
    Administrator Top User lisa1962's Avatar
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    Thread is almost 6 years old.

    Closing thread to avoid confusion

  10. #10
    Moderator Senior User IndyLou's Avatar
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    Hello, Clare--I received 7 weeks of radiotherapy to my neck. It can be rather harsh, I'm not going to sugar-coat it. Can you tell me anything about how they're going to treat you? I assume with IMRT? Will they irradiate a full 360 degrees around your neck, or just a specific location?

    In the short term, the radiation will play with your salivary function. Your saliva may actually increase, then decrease. Over time, it should improve.

    Depending on where the radiation is applied, you may experience oral mucositis, which can be unpleasant, and make it difficult to eat solid foods. There are some oral solutions that can help keep your mouth from becoming too sore. Regular rinsing with a water/hydrogen peroxide solution can help heal any sores.

    Ensure drinks worked really well for me, but I also used a feeding tube. The radiation could change the way food tastes in the short term, so eating becomes purely functional. It's not too pleasant.

    Again, much depends on your specific treatment. Please share what you can, and I'll see if I can offer any other suggestions.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED

 

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