Catch 22 Need advice ASAP

mehrdad357
mehrdad357 Member Posts: 66
in Head and Neck Cancer #1

Hello all,

I have a dilema and will appreciate advice from anyone who has been in a similar situation:

My swollen left neck lymph node appear on July 16, 2016, followed by the right on the 25th. I had a PET CT scan on 8/17/16 and

was diagnosed with H&N cancer stage 4b HPV+, primary : base of tongue.

Yesterday 9/15/16 I had my first appointment with Radiation Oncologist and his MSN. The doc and I did most of the talking.

My big question is about teeth?

He said before he can statrt Rad therapy, I should see my dentist ASAP and ask him to check out all my teeth and if any tooth is

hopeless ask him to extract it right away. The Rad Onco said we will then delay Radiation therapy (which will naturally delay the Chemo

as well), until the moth has completely healed. I asked him if this takes another week or so, will my cancer go to stage 4 c? He said yes it may

and actually it may already be in stage 4 c, and us not knowing it, since the PET does not show anything in the lung.

I called my dentist yesterday and he was shocked by my news and rescheduled a patient to see me today. He is great, extremely caring person

and I have been his patient since 1993. He knows that I have Periodontal disease since 1989 and it is not curable. After a deep root cleaning he took

both a full mouth series X-Ray as well as X-rays of molar, premolar and canine teeth. He stated there are no cavities that he can see visually or

on the X-rays, but then he showed a tooth to me on the full mouth series and I could see that most of the bone aroun that tooth have disappeared

and it is supported by very little bone. He told me he can guarantee that tooth for 6 months, but not for 1 year. I asked his opinion and he realized

how much I am concerned that due to his extraction my cancer may go from 4 b (Curable) to 4 c (Incurable), he told me if I did not have this dilema,

he would stongly suggest for extraction so that I will take no chances my cancer treatment and afterwards. But given my circumstances he would

recommend not to extract it, as we know for sure that it will delay my treartment at least by 1 or 2 weeks and perhaps a bit more.

Unfortunately when I asked either my Chemo T or my Rad. T, how long it takes for my cancer to go from 4b to 4c, I was given the answer

that We don't know. I could have already happened it could happen in a week or 2 months. For the first time my dentist gave me a compromised

answer based on what my Oncos have told me.

I have been tenatively scheduled for a PET CT Simulation for radiation planning (to make the MASK). On 9/20/16. I am the one who goes with it

or cancels it. Another problem is discrepency between what my Radiation Onco and his MSN told me.

He told me: After my 32 sessions of radiations are complete any serious wound in my mouth (He said such as the site of an extraction), will take

many times longer to heal than that same wound before my radiatin. When I got the appt. with my dentist on 9/15/16, called his MSN

to double check and she told me on 2 ocaasions that the MD told me this will be the case 6 months after my radiation treatment is over

and not for rest of my lif. I listened to the tape (I record my sessions with my onclogists with their permissions), he told me on 2 ocassions

the same thing that I originally heard! He dod not specify any time frame after my Radiation treatment has been over and so I have to assume

he meant indefinitely.

I have a big dilema & a very shot time to make a decision and therefore any help from someone who has had a problem similr to mine or

knows about it will be greatly appreciated.

 

    Thanks a lot

    Mehrdad

 

 

 

 

 

 

 

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    edited September 2016 #2
    Question

    Have you had a biopsy done?  When my husband was diagnosed he had a CT scan, then a biopsy and then a PET Scan before any treatment was started.  Once the biopsy was done to confirm it was cancer, it took 4-6 weeks before treatment started.  He was stage 3 due to the size of the tumor but there was no spread at that time.   I don't see how they can diagnosed cancer without a biopsy and the stage.  As far as the teeth, my husband was told to have his teeth pulled but he declined and never even saw the dentist before he started treatment.  He had bad teeth and gum disease and had lost a good many on the bottom already.  After a total of 72 rounds of radiation (2 different times in the same spot) and 10 chemo treatments and surgery he never complained with his teeth.  But I know at the end of his life a couple of his teeth just fell out.

    Remember everyone is different in how they react and respond to treatment. 

    Wishing you peace and comfort

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited September 2016 #3
    Husband's experience

    Cancer treatment is hurry up and wait in the beginning. Very frustrating if you are the one going through it but also very common.

    Husband was stage 4 hypopharyngeal and base of tongue. Tumor was so large he had difficulty swallowing. Biopsy confirmed, all teeth were extracted but chemotherapy proceeded while waiting for his mouth to heal which took six long worrisome weeks. Radiation proceeded then with no issues. Do exactly as the process is described.  Very important to follow the process.

    We are 6 years out now with excellent dentures and no related recurrence.

    Breathe. All of this takes time, Mehrdad.

  • mehrdad357
    mehrdad357 Member Posts: 66
    #4
    Noellesmom said:

    Husband's experience

    Cancer treatment is hurry up and wait in the beginning. Very frustrating if you are the one going through it but also very common.

    Husband was stage 4 hypopharyngeal and base of tongue. Tumor was so large he had difficulty swallowing. Biopsy confirmed, all teeth were extracted but chemotherapy proceeded while waiting for his mouth to heal which took six long worrisome weeks. Radiation proceeded then with no issues. Do exactly as the process is described.  Very important to follow the process.

    We are 6 years out now with excellent dentures and no related recurrence.

    Breathe. All of this takes time, Mehrdad.

    Thank you and congratulations

    Thank you and congratulations to your husband. I really glad for him. Do you rememer which stage 4? Do you know whether he was HPV+ or HPV-?

    There is 4a (Metastisezed to just 1 side of neck lymph node). 4b: It has metastised to lymph nodes on both sides.

    Stage 4 c: It has metastized to Lund and or other distant parts of body.

    As of today I don't have any symptoms, but my Oncos think this is not a big deal and it could still go to 4c or is already there.

    Both my Radiation Onco & Medical Onco told me for best results Chemo Therapy needs to start 1 week before Radiation.

    Perhaps they are incorrect, because in your husband's case they did chemo 1st. , and 6 years on is a long time. I wish him many

    more years, this may prove that my Oncos ae incorrect.

          Thank you fr your response.

          Mehrdad

     

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited September 2016 #5
    mehrdad357 said:

    Thank you and congratulations

    Thank you and congratulations to your husband. I really glad for him. Do you rememer which stage 4? Do you know whether he was HPV+ or HPV-?

    There is 4a (Metastisezed to just 1 side of neck lymph node). 4b: It has metastised to lymph nodes on both sides.

    Stage 4 c: It has metastized to Lund and or other distant parts of body.

    As of today I don't have any symptoms, but my Oncos think this is not a big deal and it could still go to 4c or is already there.

    Both my Radiation Onco & Medical Onco told me for best results Chemo Therapy needs to start 1 week before Radiation.

    Perhaps they are incorrect, because in your husband's case they did chemo 1st. , and 6 years on is a long time. I wish him many

    more years, this may prove that my Oncos ae incorrect.

          Thank you fr your response.

          Mehrdad

     

    Stage

    The doctors referred to Jim as 4a and 4b. Lymph node positive on one side and suspicious on the other. Jim was HPV negative.

  • mrspaul
    mrspaul Member Posts: 24
    #6
    My husband was diagnosed on

    My husband was diagnosed on July 20th of this year with Stage 4A - the cancer was in both tonsils and in the left lymph node.  After an examination by radiation oncologist and medical oncologist, it was determined that his teeth were not strong enough to go thru the radiation and all his teeth were removed.  We did this the next week.  Someone wrote when you are first diagnosed it is - hurry up and wait.  That is exactly how I feel.  After the diagnosis on july 20, the teeth were out next week and then the tonsils were removed on august 9th.  After meetings with radiation, medical, surgeon, it was decided that my husband will have a three agent chemo treatment for nine weeks, then another PET scan (his first one showed the cancer has not spread beyond the tonsils, left lymph node - nothing in lungs) - after the PET scan after chemo, it will be determined whether to remove the lymph node - then radiation/chemo or not remove the node and continue with radiaiton/chemo.  My husband had his chemo port implanted on Friday, September 9th, ....then we have a "chemo teach" appointment on the 21st, nutrition appointment on the 28th, speech and swallow on the 29th --- then the chemo can begin.  I feel like - this cancer has been there since july that we know of....and the lymph node is still there.  Cancer is not like on television where the person is put right in the hospital and treatment begins.  I want the chemo to start, I want the cancer cells killled!  

    Having the teeth out early while my husband feels good (aside from lymph node pain) was the best decision for him - he really believes that - instead of waiting for chemo to end, and possibly feel weaker, etc.  

    We dont know the side effects yet from the chemo he will have, how to take care of him during that time...we will learn all that this wednesday....I work from home, thank goodness for that, so at least I will be here during day and night with him....

    ellen

  • swopoe
    swopoe Member Posts: 492
    #7
    My husband was only stage 1

    My husband was only stage 1 at diagnosis, but still had to have his teeth examined to make sure they could withstand treatment. Thankfully, his teeth were given the all clear. Even so, he was diagnosed in early October and did not begin chemo and radiation until early December (he had surgery in early November). So treatment takes a while to begin in almost every case. He was still stage 1 when treatment started. After treatment (we are 9 months out), his teeth are ok, but not as great as before. So honestly, I would take care of the teeth now before treatment begins if you need to. You don't want to stop treatment mid way to deal with teeth because once you start, it is best to finish it straight through. Make sure you are in the best possible shape before you begin. It is a rough ride, but you can do it.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited September 2016 #8
    teeth

    Mehrdad,

    Teeth are one of the biggest issues in H&N circles.  Many members have all their teeth removed prior to treatment, some don’t.  Many keep their teeth  and lose some when treatments are over and during the following years, some don’t.  Many who do have dental work following treatment take  hypobaric oxygen dives  prior to treatment (10 – 30).

    I was lucky (so far), my dentist and rad onc talked and I was given the go ahead for 35 rads.  I try to take good care of my teeth.  I brush and use fluoride rinse every day along with biotene rinse, 10 glasses a water a day and xylimelt tablets every night.  with lack of saliva the environment for your teeth is somewhat compromised, so I do what I can.

    Like you, none of us wanted to wait, let’s start and kill this stuff.  You may have trouble in dental land regardless if you wait;  if your teeth or gums are already an issue.   It is a tough call.  I hear that the oxygen dives are ok and to bring a book.

    Matt

  • Tmclaren
    Tmclaren Member Posts: 15
    edited September 2016 #9
    Teeth

    I was stage 4 BOT cancer also had spread to lympnodes in my neck .I waited for 2 months to even start treatment as I had to wait for PET scan results .The dentist at the cancer clinic told me as I was in the process of finishing up a root canal I should get the back molar extracted which I did but it did not delay my treatments of chemo and radiation . You are best to get any teeth issues dealt with before treatments as of course it's much worse to have any extractions done after . 

  • mehrdad357
    mehrdad357 Member Posts: 66
    edited September 2016 #10
    mrspaul said:

    My husband was diagnosed on

    My husband was diagnosed on July 20th of this year with Stage 4A - the cancer was in both tonsils and in the left lymph node.  After an examination by radiation oncologist and medical oncologist, it was determined that his teeth were not strong enough to go thru the radiation and all his teeth were removed.  We did this the next week.  Someone wrote when you are first diagnosed it is - hurry up and wait.  That is exactly how I feel.  After the diagnosis on july 20, the teeth were out next week and then the tonsils were removed on august 9th.  After meetings with radiation, medical, surgeon, it was decided that my husband will have a three agent chemo treatment for nine weeks, then another PET scan (his first one showed the cancer has not spread beyond the tonsils, left lymph node - nothing in lungs) - after the PET scan after chemo, it will be determined whether to remove the lymph node - then radiation/chemo or not remove the node and continue with radiaiton/chemo.  My husband had his chemo port implanted on Friday, September 9th, ....then we have a "chemo teach" appointment on the 21st, nutrition appointment on the 28th, speech and swallow on the 29th --- then the chemo can begin.  I feel like - this cancer has been there since july that we know of....and the lymph node is still there.  Cancer is not like on television where the person is put right in the hospital and treatment begins.  I want the chemo to start, I want the cancer cells killled!  

    Having the teeth out early while my husband feels good (aside from lymph node pain) was the best decision for him - he really believes that - instead of waiting for chemo to end, and possibly feel weaker, etc.  

    We dont know the side effects yet from the chemo he will have, how to take care of him during that time...we will learn all that this wednesday....I work from home, thank goodness for that, so at least I will be here during day and night with him....

    ellen

    Your husban's teeth

     

    Hello Ellen,

    Can you please tell me how the onclogists determined your husban teeth was not strong enough? Does he have incurable periodontal

    disease which at each later stages causes significant bone of the tooth loss , like I do? Can I ask you how old he is? I just turned 67

    on 9/3/16. Maybe my Radiation oncologist is too relaxed, I saw him on 9/15 and he told me go to your dentist ASAP and have him

    determine which teeth should be pulled out, he added only if he sees a tooth is hopeless it should be pulled out. As I stated in my original

    post the dentist saw only 1 problematic tooth due to loss of a lot of bone, that is the tooth itself is fine. He stated if I were not in stage 4b and possibly

    heading for 4c (incurable), he would pull that tooth out, but that will delay my treatment by 2 to 3 weeks and decided hesitatanly to leave it there.

    He said he can guarantee the tooth for 6 months, but it could last much longer than that, however he said that he is not sure about effects of radiation  . He is an excellent dentist, but not Onco dentist. I messaged his comments to my Radition Onco on 9/17 and plan to call him Mon. 9/19.

      Thank you very much

        Mehrdad

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