88 Year Old Mother Just Diagnosed with Salivary Gland Cancer

Hi everyone. My mother had a FNA last week and was told the tumor in her salivary gland was malignant.  One lymph node as well. We are awaiting the complete strain results which should come in today.  We are probably going to make an appointment with Dr. Marshall Ponser at Mt. Sinai in New York.  Does anyone hae a doctor at Sloan they would recommend?  Also, does anyone have experience with salivary gland cancer.  She's 88 and not sure if we want to take the surgery route.  Thanks inadvance.

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Comments

  • swopoe
    swopoe Member Posts: 492
    Just read your post, and am

    Just read your post, and am keeping you and your mom in my thoughts. Hopefully someone will chime in with experience with Mt. Sinai or salivary cancer. 

  • Teree61
    Teree61 Member Posts: 7
    swopoe said:

    Just read your post, and am

    Just read your post, and am keeping you and your mom in my thoughts. Hopefully someone will chime in with experience with Mt. Sinai or salivary cancer. 

    Thanks

    I hope so too.

  • wmc
    wmc Member Posts: 1,804
    Welcome to H&N group

    Welcome, and also sorry you need to be here for your Mother. I do not know the doctors at Sloan Kettering, however they are #2 in the nation for cancer and #43 for ENT. Mount Sinai Hospital is #23 in ENT but #49 in cancer. Both have very good programs and are Nationally Ranked.  [http://health.usnews.com/best-hospitals/rankings/cancer]

    It will be a rough road with treatment but she can get through this. It will most likely reduce or stop her production of slava so she needs to sip all she can and stay hydrated. If she could put on a few extra pounds before treatment that often can help. Were all here for support and several have slava problems and can help with what works the best. For now I would recomend reading the "Superthread [read only] at the top of the post's, it has most all the terms and answere for questions you have not even had yet. You both are in my thoughts and prayers.

    Bill

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Teree

    Sorry to hear that but you are in the right place for answers, to help both you and your mother. I did local doc and MDA in Houston so can’t say good or bad about the guys up north.

     

    Welcome to the family

    Tim

  • katenorwood
    katenorwood Member Posts: 1,912
    me

    Teree,

    I'm not on here much anymore.  Do they know the specific dx yet ?  Mine was in the large saliva gland back in 2011.  (adenoid cystic carcinoma)  Depending on the stage and tumor type, this is a very slow growing cancer.  I have a site for you to check out.  www.accrf.org and their sister site www.accoi.org.  This site deals in mainly ACC, so when you have a few minutes give it a look.  I'm here if you have any questions.  Also the tx's are pretty standard to everyone on this site.  These folks know how to direct you.  Katie

  • Teree61
    Teree61 Member Posts: 7

    me

    Teree,

    I'm not on here much anymore.  Do they know the specific dx yet ?  Mine was in the large saliva gland back in 2011.  (adenoid cystic carcinoma)  Depending on the stage and tumor type, this is a very slow growing cancer.  I have a site for you to check out.  www.accrf.org and their sister site www.accoi.org.  This site deals in mainly ACC, so when you have a few minutes give it a look.  I'm here if you have any questions.  Also the tx's are pretty standard to everyone on this site.  These folks know how to direct you.  Katie

    Metastasized to Lungs and Bone

    Hi Everyone.  We saw the head and neck doctor at Mt. Sinai.  They did some blood work and PET scan.  Spread to right lung and bones, specifically I think clavicle and upper spine. Nad the saw a lesion on the back of her tongue.  She is now not a candidate for salivary gland tumor surgery.   They now wawnt to do a biopsy on the lung and then just treat with chemo.  We are besides ourselves.  She has had no symptoms at all.  No pain, no dificulty breathing, no shorntess of breath.  If it wasn't for the swelling by the gland we would never have know.    Oncologist said this was probably growing for about five years but we would never have found it any earlier.  Any advice would be greatly appreciated.

  • swopoe
    swopoe Member Posts: 492
    Teree61 said:

    Metastasized to Lungs and Bone

    Hi Everyone.  We saw the head and neck doctor at Mt. Sinai.  They did some blood work and PET scan.  Spread to right lung and bones, specifically I think clavicle and upper spine. Nad the saw a lesion on the back of her tongue.  She is now not a candidate for salivary gland tumor surgery.   They now wawnt to do a biopsy on the lung and then just treat with chemo.  We are besides ourselves.  She has had no symptoms at all.  No pain, no dificulty breathing, no shorntess of breath.  If it wasn't for the swelling by the gland we would never have know.    Oncologist said this was probably growing for about five years but we would never have found it any earlier.  Any advice would be greatly appreciated.

    I am sorry to hear this news.

    I am sorry to hear this news. Your mom and the entire family are in my thoughts.

  • Barbaraek
    Barbaraek Member Posts: 626
    Teree61 said:

    Metastasized to Lungs and Bone

    Hi Everyone.  We saw the head and neck doctor at Mt. Sinai.  They did some blood work and PET scan.  Spread to right lung and bones, specifically I think clavicle and upper spine. Nad the saw a lesion on the back of her tongue.  She is now not a candidate for salivary gland tumor surgery.   They now wawnt to do a biopsy on the lung and then just treat with chemo.  We are besides ourselves.  She has had no symptoms at all.  No pain, no dificulty breathing, no shorntess of breath.  If it wasn't for the swelling by the gland we would never have know.    Oncologist said this was probably growing for about five years but we would never have found it any earlier.  Any advice would be greatly appreciated.

    Teree, I am sorry the cancer has metastasized

    I think the issue to keep in mind here at age 88 is quality of life. Weigh all of the options. Chemo may prolong the time your mom has...but it may also bring with it some undesireable side effects. There will be many perspectives to consider - prayers to you and your family in sorting through all the options and choosing the one that is best for your mom.

    Barbara

  • MrsBD
    MrsBD Member Posts: 617 Member
    Your mom

    I'm sorry you had to come here for advice because it means another person has joined this family.  My father-in-law is also 88 and dealing with some health care decisions so I understand some of your concerns. It is possible your mom could be treated with one of the newer antibody therapies instead of chemo. That could mean fewer side effects. When you go to a larger cancer center, a board will review your case and make recommendations. I would trust their expertise. You are in my prayers. 

  • wmc
    wmc Member Posts: 1,804
    Teree61 said:

    Metastasized to Lungs and Bone

    Hi Everyone.  We saw the head and neck doctor at Mt. Sinai.  They did some blood work and PET scan.  Spread to right lung and bones, specifically I think clavicle and upper spine. Nad the saw a lesion on the back of her tongue.  She is now not a candidate for salivary gland tumor surgery.   They now wawnt to do a biopsy on the lung and then just treat with chemo.  We are besides ourselves.  She has had no symptoms at all.  No pain, no dificulty breathing, no shorntess of breath.  If it wasn't for the swelling by the gland we would never have know.    Oncologist said this was probably growing for about five years but we would never have found it any earlier.  Any advice would be greatly appreciated.

    Teree Truly sorry to read this

    I wish I had the answere you are looking for, but I don't. Metastasized to lungs and bone is not good. Most of the time there is no pain with so much of the cancers. I only had pain in my left ear that would come and go. When it was there is was a shooting pain and unbearable. If she is not short of breath, that is good as it has not damaged the air sacks. Please know I will keep you and the family in my prayers. Hope she never has any pain and can be at peace.

    Bill

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Your Mother

    I am sorry to hear about your mother.  At age 88 chemo might be too hard especially if she has other health issues.  My husband was only 73 when first diagnosed with laryngeal cancer.  The radiation and chemo were hard on him but his health was otherwise good.  Then one year after surgery he was diagnosed with a second primary at the cervical of his esophagus and we were told up front no surgery.  He underwent more radiation and chemo and that took a lot out of him.  In less than 8 months we found out that the cancer at the cervical of his esophagus was back and much larger and had spread to his lungs.  The only thing offered was chemo and we were told upfront that it could hasten his time as well as prolong his time.  He had already told me he wasn't going to do anything else and refused all further treatment.  None of his doctors tried to talk him out of his decision.  He had another good 18 months and then went downhill.

    Treatment is hard as all can tell you and what works for one doesn't mean it will work for another.  I have told our sons that after watching what their father went thru, I don't think I could or would do it.  Hope I never have to find out although I have already had a scare but was lucky since it wasn't cancer. 

    My advice to you is let this be your mother's decision, don't make it for her.  Regrets are hard and wishes that you had or hadn't have done more are hard too.  I remember my mother going thru by-pass surgery at 82 and while it extended her life by 3 years, they weren't good years at all for her but it was her choice and none of tried to talk her out of it.

    Wishing you and your mother peace and comfort

     

     

  • Teree61
    Teree61 Member Posts: 7
    Lung Biopsy

    Thank you all for your comments and advice.  My sisters, brother and I are gathering enough information to help my mother make her decision. We will not force her to do it or not do treatment.  So far she says she would like to start with chemo.  Doctor sad it would be a low dose.  Hopefully pil form for less side effects.  Will make further decisions as we get to that point though.  But they do want her to have a lung biopsy to confirm that it is cancer.  On the PET scan results it says something about emphysema.  But a biopsy would give a more accurate of idea of the cancer and how to treat it.  I've heard good and bad about lung biopsy. This is all so daunting.  Any thoughts or comments on a lung biopsy?

  • JM0377
    JM0377 Member Posts: 18
    Salivary Gland Cancer

    Hello,

    I was diagnosed with adenoid cystic carcinoma in January 2015. My tumor was located in my left submandibular gland. I had surgery to remove the tumor and gland. I also had 33 sessions of radiation. I definitely recommend the ACCOI websites and resources previously recommended. I was told the same that it is a slow growing cancer. I have no idea how long I had it. I found a lump in my neck and just thought it was a swollen lymph node. Best wishes to your mother.

    Jennifer

  • wmc
    wmc Member Posts: 1,804
    Teree61 said:

    Lung Biopsy

    Thank you all for your comments and advice.  My sisters, brother and I are gathering enough information to help my mother make her decision. We will not force her to do it or not do treatment.  So far she says she would like to start with chemo.  Doctor sad it would be a low dose.  Hopefully pil form for less side effects.  Will make further decisions as we get to that point though.  But they do want her to have a lung biopsy to confirm that it is cancer.  On the PET scan results it says something about emphysema.  But a biopsy would give a more accurate of idea of the cancer and how to treat it.  I've heard good and bad about lung biopsy. This is all so daunting.  Any thoughts or comments on a lung biopsy?

    Lung Biopsy...........

    Yes there is some risk with a lung biopsy, they are required to say that. I had one because of a spot on my lung and was sick and very short of breath. My doctor really didn't want to do it. He told me it was at best 50/50 he could even get to the spot, which was high up in the breast about 1" above on my left side, and the risk of bleeding. Well it got to where I didn't care as I had to get better and was off work 3 months. He hit it dead on and no bleading, and that was 37 years ago. Turns out to be, don't laugh, mineral oil from when I had surgery to fix a broken nose and it ran down my throat and I inhaled it. Yes it is still there the size of a nickle and it has scarred many x-ray technician. I was treated with antibiotics for Valley fever and was fine. They have gotten so much better now. If it was me, I would want the biopsy just to know if it was cancer or emphysema. Yes I have sever emphysema Stage 3 and Chronic Bronchitis as well. 

    I am not 88 and only 65, and most likely never see close to 80. If it is just emphysema it could greatly change how they do treat her. With it being in the bone it will still be chemo only I would guess. They could treat the emphysema with just inhaliers and can help it from progressing, as you can't cure emphysema, but you can slow it way down.

    Have they said what they are hopping for time wise with the way it has spread? That would be what I would make my decision on, whether to have the biopsy or not, sorry for having to word it that way. Will keep all your family in my prayers and thoughts, I know this has to be very hard as I have lost both of my parents. My Father to lung cancer and Mother to Kidney failer and was with her when she stopped treatmen

    Bill

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Teree61 said:

    Lung Biopsy

    Thank you all for your comments and advice.  My sisters, brother and I are gathering enough information to help my mother make her decision. We will not force her to do it or not do treatment.  So far she says she would like to start with chemo.  Doctor sad it would be a low dose.  Hopefully pil form for less side effects.  Will make further decisions as we get to that point though.  But they do want her to have a lung biopsy to confirm that it is cancer.  On the PET scan results it says something about emphysema.  But a biopsy would give a more accurate of idea of the cancer and how to treat it.  I've heard good and bad about lung biopsy. This is all so daunting.  Any thoughts or comments on a lung biopsy?

    Lung Biopsy

    My husband had a needle lung biopsy and we were told up front that his lung could possibly collapse.  The spot they were trying to reach was small and hard to reach.  On the third try they were able to get something to biopsy.  And yes his lung did collapse and he was hospitalized for several days but it expanded again without too much trouble.  And yes it was cancer.  They also said something in his report about COPD but he wasn't having any breathing problems.  Years before we were told he had lung cancer that had spread and there was nothing they could do, this was after x-rays and a CT scan.  We were referred to a specialist and he did a bronoscope and came out and told me that what my husband had was a severe lung infection and not cancer.  His lungs were scared from that infection and we thought once again that was the problem, but the biopsy this time said a spread of his cancer. 

    Just remember everyone reacts differently so what happens to one, doesn't mean it will happen to another.  Your mother's age will play a big part too.  My husband was 75 at the time of the second lung biopsy and he was a pipe smoker for over 40 years. 

    Wishing you and your family peace and comfort

     

  • kdot2003
    kdot2003 Member Posts: 143
    Teree61 said:

    Metastasized to Lungs and Bone

    Hi Everyone.  We saw the head and neck doctor at Mt. Sinai.  They did some blood work and PET scan.  Spread to right lung and bones, specifically I think clavicle and upper spine. Nad the saw a lesion on the back of her tongue.  She is now not a candidate for salivary gland tumor surgery.   They now wawnt to do a biopsy on the lung and then just treat with chemo.  We are besides ourselves.  She has had no symptoms at all.  No pain, no dificulty breathing, no shorntess of breath.  If it wasn't for the swelling by the gland we would never have know.    Oncologist said this was probably growing for about five years but we would never have found it any earlier.  Any advice would be greatly appreciated.

    I'm so sorry to hear this.

    I'm so sorry to hear this.  My only thoughts is try to help her determine what she wants to do and dont let her do what everyone else wants her to.  Whatever she decides is the perfect choice.

  • Teree61
    Teree61 Member Posts: 7
    Where We Stand

    Thank you all for your input.  Lung biopsy was done Monday. She's home from the hospital.  We now have appointments with Geriatric Palliative Care, Oncology and her doctor through next week.  Then we'll know how they want to treat her.  Visiting nurse came yesterday.  It's just so perplexing because she looks and acts like the same mother she did a year ago.  No symptoms at all.  I'm just hoping for the best.

  • wmc
    wmc Member Posts: 1,804
    Teree61 said:

    Where We Stand

    Thank you all for your input.  Lung biopsy was done Monday. She's home from the hospital.  We now have appointments with Geriatric Palliative Care, Oncology and her doctor through next week.  Then we'll know how they want to treat her.  Visiting nurse came yesterday.  It's just so perplexing because she looks and acts like the same mother she did a year ago.  No symptoms at all.  I'm just hoping for the best.

    So very sorry...........

    This is so hard on you and your family right now. Be prepaired and ask many questions about the chemo and what they expect, and how they think she will do and feel. Write them down and leave room for answers, then just hand them to the doctor. It works out better this way. He will answer your first or second question, and when you hear the answer you'll go blank and not process the rest. Sorry but it can happen. I knew what had to be done on me and I did all my research, which I am good on, and I was ready for anything he could say. Found out I wasn't.  It might be better for two to go with your Mother. They will have to be a little blunt in what is going to happen, [Sorry ] but it is better to know the truth, and what to expect. They may give two scenarios, the best case and the worst case, and somewhere in the middle is what it might be. Ask if they have any grief counseling available for the family, that is covered by insurance. It is always good to have someone you can open up to. [Don't forget we all are hear as well] It helps to talk to non-family, and ones that do understand what you are going through. It also helps to just write it down, ether here or in a jurnal which you can go back and reread later. It is always hard to know what to say or tell someone going through this, I know. My mother had sever kidny failer and wanted to stop the treatment, but need me to understand and give her my blessing. I would drive home 200 miles to her every other Friday and take care of her. My sister did the other weekend and my brother had the weekdays. We had help come in weeknights. I came alone and never left the houst until I left to drive back on sunday. I gave her my blessing that she needed. I did understand what she was asking and doing. This was where what was best for her, was all that mattered. Hospice came in so all my job was just to be there. We knew she would have 12 to 14 days only. She said she wanted me to be with her at night as that was her hardest time as she would think of my father, and my sister could be with her in the day. 

    Your mother could be fine on palliative and be with you all for many years, so her doctor will give you some idea. As sad as this is and I don't know how to word this better and mean no disrespect. You and Her family are lucky in a strainge way, that you will have the time to ask her any questions, and have time to prepair for the goodbys. That part is hard, but in a small way it is a blessing. For me I feel I was luchy and had that time and got to say all I needed and always I Love You's. When you loose someone hrom say a stroke or heart attack, you never had the time to get to where you all are at peace. It is still hard and you will always have the greif, but you were given the gift of time to tell her what you need to. There is never one day I don't think about my Father who we lost 31 years ago, and my mother 23 years ago. I am just lucky I has the time to say goodby. 

    I do hope this may help and you can see what I'm trying to say to help, as it is hard to write this for someone. Just remember when you joined CSN you did become family, and you will not be alone in this. I will keep you and your family in my thoughts and prayers, and hope at some point you all reach peace.

    Bill

  • Teree61
    Teree61 Member Posts: 7
    Thank You All For Your Comments

    Hi everyone.  I so appreciate all the comments you've taken the time to make.  About a week ago my mother suddenly developed acute diabetes. Blood sugar was 531.  Never in her life had she had high blood sugar.  Took her to ER and she stayed 5 nights to regulate the blood sugar. Kidneys were a little slow in functioning as well and legs and feet were swollen. Came home yesterday now wih diabetes medications and glucometer, water pill and anti-biotics.  She's weak and can't stand up on her own yet.  Anyone ever have or hear of sudden onset diabetes like this with cancer? It is baffling how this happened suddenly.  Now we have to regulate blood sugar at home before she can even think of cancer treatment. 

  • wmc
    wmc Member Posts: 1,804
    Teree61 said:

    Thank You All For Your Comments

    Hi everyone.  I so appreciate all the comments you've taken the time to make.  About a week ago my mother suddenly developed acute diabetes. Blood sugar was 531.  Never in her life had she had high blood sugar.  Took her to ER and she stayed 5 nights to regulate the blood sugar. Kidneys were a little slow in functioning as well and legs and feet were swollen. Came home yesterday now wih diabetes medications and glucometer, water pill and anti-biotics.  She's weak and can't stand up on her own yet.  Anyone ever have or hear of sudden onset diabetes like this with cancer? It is baffling how this happened suddenly.  Now we have to regulate blood sugar at home before she can even think of cancer treatment. 

    I do believe so but have no proof.

    When my Father developed terminal lung cancer and six months earlier the x-ray showed there was nothing and all clear. He was given six months and we did get 6 years.  First, they said no more salt. Next was he became diabetic and controlled by diet and pills. Then they said he could no longer have his one drink at night. 

    As for me, I had just gotten new glasses and the first time with trifold. Ther were great. I could see to read, see the dash in the car and the computer was so much better and I was on one 8 hours a day. Several months my vision started changing. To see objects in the distance I had to look over my glasses, then two hours later the glasses were good. My vision went back and forth all day and sometimes stayed for days one way. I am not diabetic as I know if your numbers are up your vision can change. Then in a few months, they found my cancer. Over the next six to eight months I mentioned this to doctors but they didn't seem to see any connection to having cancer.  Now it 2.5 years later and my overall vision is better and has settled in where I now feel I can get glasses and my vision will hold.  I have no sound proof that cancer is/was the cause, but I do believe so. I doubt this will help much but I hope someone else may answer also and that might help.

    Bill