Cancer in Pharynx

Hi All,

The last few days have been crazy, after my father was diagnosed with Pharyngeal cancer. We are yet to do further checks to identify the stage, spread etc. I am sure everyone here knows how it feels like to receive this news first.

By the time we do further checks, I would like to know if anyone here has successfully survived pharyngeal cancer and from what stage. Not sure if I am jumping at the gun, sorry its all my anxiety on this. The pathology reports just mention "moderately differentiated squamous Carcinoma in Pharynx". How fast do you think this would spread? Their next tests are scheduled for Tuesday. I am concerned whether its late to wait for 3 days after knowing.

Comments

  • Pam M
    Pam M Member Posts: 2,196
    MANY Survive
    I am a survivor of Oro-pharyngeal cancer (base of tongue)- not diagnosed until Stage Four - like a lot of people here. I was amazed and greatly heartened by the number of people on this site who made it through when I first starting visiting this web site. I had (stupidly) tried to look up survival stats for people with my diagnosis, and saw frightening, depressing numbers. I had also heard that "Stage Four" was a death sentence. THEN I found this site, and with it hope.

    I would not be concerned by a three day wait. Easy for me to say, I know. I did not have my "official" diagnosis until a month after I discovered the lump. I did not begin treatment for another month (started treatment late November, 2009). Many here waited longer before starting treatment.

    I wish I could ease your suffering during this time. The time between discovery and treatment was agonizing - I was afraid that while I wasted time, the cancer might be growing and spreading and taking away my chances of survival.

    Please keep us updated. Do well.
  • janenz00
    janenz00 Member Posts: 12
    Pam M said:

    MANY Survive
    I am a survivor of Oro-pharyngeal cancer (base of tongue)- not diagnosed until Stage Four - like a lot of people here. I was amazed and greatly heartened by the number of people on this site who made it through when I first starting visiting this web site. I had (stupidly) tried to look up survival stats for people with my diagnosis, and saw frightening, depressing numbers. I had also heard that "Stage Four" was a death sentence. THEN I found this site, and with it hope.

    I would not be concerned by a three day wait. Easy for me to say, I know. I did not have my "official" diagnosis until a month after I discovered the lump. I did not begin treatment for another month (started treatment late November, 2009). Many here waited longer before starting treatment.

    I wish I could ease your suffering during this time. The time between discovery and treatment was agonizing - I was afraid that while I wasted time, the cancer might be growing and spreading and taking away my chances of survival.

    Please keep us updated. Do well.

    Thank you
    Hi Pam,

    Your words give me immense relief at the moment that I do not have words to express. Yes, I will keep the updates posted here.

    Thanks,
    Jane
  • Pam M
    Pam M Member Posts: 2,196
    janenz00 said:

    Thank you
    Hi Pam,

    Your words give me immense relief at the moment that I do not have words to express. Yes, I will keep the updates posted here.

    Thanks,
    Jane

    Good
    I know that if you're like I was, you'll be checking in throughout the day. It's late on a Friday night, so it looks like we don't have many people on the site right now. Just wait til tomorrow (OK, later today) - there will be MANY more comments. I can't tell you how it feels to see several people speak up, and let you know they exist, when you're thinking they probably don't. It was fabulous for me to see lots of people telling survival stories, when I was obsessed with a dire statistics that were surely old, and perhaps slanted.

    Unfortunately, many more people are getting head and neck cancers than in the past. It works for us though, because more patients means more information, and better ways to fight the cancer. Glad I could provide some relief. Can't wait til you hear from some of the others here.
  • Billie67
    Billie67 Member Posts: 898
    janenz00 said:

    Thank you
    Hi Pam,

    Your words give me immense relief at the moment that I do not have words to express. Yes, I will keep the updates posted here.

    Thanks,
    Jane

    Jane
    Gosh, I'm so sorry you had a need to look us up. You are in the right place tho& I have good news for you, there are many of us that have had successful treatment and our scans show no sign of disease. I was diagnosed with stage IV laryngeal cancer with a few lymph nodes involved as well.
    My scans also show no evidence of disease.
    I was diagnosed this last March but didn't start treatment until mid May. I too was "freaked out" for lack of a better term about the wait and kept thinking the cancer would grow and spread. My radiology oncologist, medical oncologist and my ENT/surgeon all assured me that it doesn't work like that.
    Try hard to not worry about it spreading and stay positive because head and neck cancer treatment has become very successful in curing people.
    Keep us posted and if you tell us your basic location you might be surprised by another member who may be in your area and can suggest a doctor or treatment facility to you if you'd like a second opinion. My last bit of advice is to stay off of the Internet doing searches for all things cancer. This is a great site and the folks on here are a wealth of positive information. You can ask us anything! Searching the Internet will only confuse, scare and worry you. Some of those sites can make a hangnail seem like a death sentence.
    Take care and keep us posted.
    Billie
  • phrannie51
    phrannie51 Member Posts: 4,716
    Welcome Jane....sorry you had to
    join this club. On the other hand, I'm SO glad you found this forum...it is filled with knowledgeable, smart, kind and supportive people.

    I was diagnosed with Naso-pharengeal Carcinoma (Stage III, two lymph nodes...no mets) on March 5th of this year...treatment didn't start until April 21st. I was a nervous wreck thinking that the Dr.'s were sure taking their sweet time getting treatment going...but as I read posts on here, I saw that that others had a waiting period too...getting everything set up takes some time and my experience was totally normal.

    There are many surviors of this type of cancer on this site...so far, I am one of them :)...and I plan to be for a long time yet to come.

    Your dad will be getting scans, so they can stage his cancer...come up with a treatment plan (which could be surgery/chemo/radiation)...all three, or two of the three if surgery isn't an option (it wasn't with mine).

    Just keep coming back here...your questions will be answered...and you will get much moral support. It's scary, but most certainly survivable.

    p
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member

    Welcome Jane....sorry you had to
    join this club. On the other hand, I'm SO glad you found this forum...it is filled with knowledgeable, smart, kind and supportive people.

    I was diagnosed with Naso-pharengeal Carcinoma (Stage III, two lymph nodes...no mets) on March 5th of this year...treatment didn't start until April 21st. I was a nervous wreck thinking that the Dr.'s were sure taking their sweet time getting treatment going...but as I read posts on here, I saw that that others had a waiting period too...getting everything set up takes some time and my experience was totally normal.

    There are many surviors of this type of cancer on this site...so far, I am one of them :)...and I plan to be for a long time yet to come.

    Your dad will be getting scans, so they can stage his cancer...come up with a treatment plan (which could be surgery/chemo/radiation)...all three, or two of the three if surgery isn't an option (it wasn't with mine).

    Just keep coming back here...your questions will be answered...and you will get much moral support. It's scary, but most certainly survivable.

    p

    hypopharyngeal
    Jane, my husband (52 years old at the time) was diagnosed with Stage 3/4 hypopharyngeal cancer with one lymph node involved in May 2010. Today, he is NED. 35 radiation treatments and 3 chemotherapy rounds took care of the cancer.

    Waiting for tests - Jane, it is an unfortunate fact that waiting is more than half the anxiety that goes along with having a loved one diagnosed with cancer. While it may seem there is not enough urgency regarding the testing, what you are saying is the norm. Your anxiety is, too :)

    Lifting prayers and good thoughts for your father. Make sure you visit the Caregiver pages, Jane. Lots of good support for you there.
  • George_Baltimore
    George_Baltimore Member Posts: 303

    hypopharyngeal
    Jane, my husband (52 years old at the time) was diagnosed with Stage 3/4 hypopharyngeal cancer with one lymph node involved in May 2010. Today, he is NED. 35 radiation treatments and 3 chemotherapy rounds took care of the cancer.

    Waiting for tests - Jane, it is an unfortunate fact that waiting is more than half the anxiety that goes along with having a loved one diagnosed with cancer. While it may seem there is not enough urgency regarding the testing, what you are saying is the norm. Your anxiety is, too :)

    Lifting prayers and good thoughts for your father. Make sure you visit the Caregiver pages, Jane. Lots of good support for you there.

    Another one that's made it through treatments
    I was diagnosed with stage IV BOT in Jan. of 2004. At that time, I also had a malignant melanoma on my shoulder and a squamous cell carcinoma on my forehead (I later developed another SCC on my forehead). As you can see, I'm still kicking (and screaming and raising a ruckus and all kinds of other things). His life will change a bit but it is definitely survivable. Hang in there.
  • janenz00
    janenz00 Member Posts: 12

    Another one that's made it through treatments
    I was diagnosed with stage IV BOT in Jan. of 2004. At that time, I also had a malignant melanoma on my shoulder and a squamous cell carcinoma on my forehead (I later developed another SCC on my forehead). As you can see, I'm still kicking (and screaming and raising a ruckus and all kinds of other things). His life will change a bit but it is definitely survivable. Hang in there.

    Thank you all
    Thank you all for being here, to help people like me. It means a lot. Also, congratulations on having survived this stage. After seeing Pam and Billie's posts yesterday night, I could go and sleep. I was sleep deprived till then.

    Billie, my base location is Dallas, TX. My father is not with me at the moment. He is in India. He looks perfectly healthy so far (saw him over skype today). Went to doctor when he had issues swallowing.

    Right now, I am keeping my fingers crossed, till they do the scan and the blood work.
    After they get the scans, I may consult a doctor here for second opinion. I am not sure how I would consult without the patient being present. Also, I am not sure how much it would cost me, since this will not be covered in the insurance. Anyway, right now I need to do the wait game, till the doctors can give us a better picture. I will definitely come back here and post update after Tuesday.

    Thank you all once again. Great to see so many people fighting this battle bravely.
  • janenz00
    janenz00 Member Posts: 12
    janenz00 said:

    Thank you all
    Thank you all for being here, to help people like me. It means a lot. Also, congratulations on having survived this stage. After seeing Pam and Billie's posts yesterday night, I could go and sleep. I was sleep deprived till then.

    Billie, my base location is Dallas, TX. My father is not with me at the moment. He is in India. He looks perfectly healthy so far (saw him over skype today). Went to doctor when he had issues swallowing.

    Right now, I am keeping my fingers crossed, till they do the scan and the blood work.
    After they get the scans, I may consult a doctor here for second opinion. I am not sure how I would consult without the patient being present. Also, I am not sure how much it would cost me, since this will not be covered in the insurance. Anyway, right now I need to do the wait game, till the doctors can give us a better picture. I will definitely come back here and post update after Tuesday.

    Thank you all once again. Great to see so many people fighting this battle bravely.

    Updates and more Questions

    Hi All,

     

    I could not get back earlier. Finally, we got my father's scan results. Its T3N0M0 squamous cell carcinoma in the hypopharynx, involving  cricopharynx, adjacent proxymal end of oesophagus and left pyriform sinus. 

    Doctors have suggested a 7 weeks course with radiation and chemotherapy combined. Can anyone please comment on how does it feel after radiation and chemo? What are the difficulties he will be experiencing? Also, what could be the worst case side effects he might get? What are the things my father (or for that matter, we) should take care of? 

    Thanks,

    Jane

  • phrannie51
    phrannie51 Member Posts: 4,716
    janenz00 said:

    Updates and more Questions

    Hi All,

     

    I could not get back earlier. Finally, we got my father's scan results. Its T3N0M0 squamous cell carcinoma in the hypopharynx, involving  cricopharynx, adjacent proxymal end of oesophagus and left pyriform sinus. 

    Doctors have suggested a 7 weeks course with radiation and chemotherapy combined. Can anyone please comment on how does it feel after radiation and chemo? What are the difficulties he will be experiencing? Also, what could be the worst case side effects he might get? What are the things my father (or for that matter, we) should take care of? 

    Thanks,

    Jane

    The course of his treatments is

    pretty much the same as I had....tho I had 3 more chemo's after having chemo and rads combination. 

    The for sure side effects will most likely be loss of taste, and sore throat....how bad the rad burns on the neck are, vary from person to person.  Most people get nausea to some degree from the chemo, but the Dr.'s will prescribe anti-nausea meds to take care of that.  This is something he'll want to keep up on, and let his Dr.'s know if he needs extra.  Lotions and potions for his neck....I used Calendula cream and Aloe Vera 99, as Aquafor was too much like vasoline (very thick and greasy).....Maybe check into getting MuGard (ask your Onc), to start using that before rads...it works great on mouth sores if you get it started before they get started.

    The list of "possible" side effects is long...and not everybody gets them....my advice is to prepare for the common ones, and then take it day by day...Are they talking at all about getting a PEG tube placed for eating down the road? 

    p

  • janenz00
    janenz00 Member Posts: 12

    The course of his treatments is

    pretty much the same as I had....tho I had 3 more chemo's after having chemo and rads combination. 

    The for sure side effects will most likely be loss of taste, and sore throat....how bad the rad burns on the neck are, vary from person to person.  Most people get nausea to some degree from the chemo, but the Dr.'s will prescribe anti-nausea meds to take care of that.  This is something he'll want to keep up on, and let his Dr.'s know if he needs extra.  Lotions and potions for his neck....I used Calendula cream and Aloe Vera 99, as Aquafor was too much like vasoline (very thick and greasy).....Maybe check into getting MuGard (ask your Onc), to start using that before rads...it works great on mouth sores if you get it started before they get started.

    The list of "possible" side effects is long...and not everybody gets them....my advice is to prepare for the common ones, and then take it day by day...Are they talking at all about getting a PEG tube placed for eating down the road? 

    p

    Hi Phrannie,
     
    The doctors

    Hi Phrannie,

     

    The doctors are suggesting Biological Medicines along with chemo. They are saying it will reduce mouth ulcers etc. Not sure how effective it would be. We have been warned about the PEG tube. Doc said they will insert it in case the ulcers go severe.

     

    So, you are saying that he needs to start lotions outside the neck before rad starting?

    Thanks,

    Jane

  • phrannie51
    phrannie51 Member Posts: 4,716
    janenz00 said:

    Hi Phrannie,
     
    The doctors

    Hi Phrannie,

     

    The doctors are suggesting Biological Medicines along with chemo. They are saying it will reduce mouth ulcers etc. Not sure how effective it would be. We have been warned about the PEG tube. Doc said they will insert it in case the ulcers go severe.

     

    So, you are saying that he needs to start lotions outside the neck before rad starting?

    Thanks,

    Jane

    No....but he will want to start using them

    the day he starts rads....use them at least a couple times a day....you have to wash them off before radiation, so I used to put lotion on right after radiation, and then before I went to bed at night....I used the Aloe 99 first....let it dry, then slather on the Calendula (which unlike Aquafor, will sink into the skin).  Calendula was advised by my Rad Dr., as it has healing properties in it.....I got it at the health food store.  The Rad Dr. gave me the Aloe 99 when they made up a radiation kit for me....but I'm sure you can either buy that at the health food store, or order it on line.

    Before I started rads, I had bought a case of Ensure from Costco....but as time went on, I started using Boost which I ordered at Amazon.com....the difference is about 150 calories for each 8 oz serving.  I needed those calories bad.

    p

  • janenz00
    janenz00 Member Posts: 12

    Hi All,

     

    Just wanted to post an update here. My father started his Chemo on the New Year day. Its 9 chemo sessions, just 2 more to go. They have not still specified how many rads will be there. We are expecting a PET scan early March to decide further course.

     

    As of now, the three issues he has is loss of appetite, bowel issues and mouth ulcers. I have been referring different threads here to find out the stuffs everyone tried. Will come up with more questions later.

     

    Thanks,

    Jane

     

     

     

     

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    Chances Are Very Good

    The chances of beating the beast are good.  Most doctors believe that neck cancer can be beten in most, but of course not all cases.  Sounds like the normal treatment for this one and things generally work out well as far as survival goes.  Will be a rough road for sure, but hang in there and care for yourself Dad best you can. 

    It will be easy, at least it was and still is sometimes to give up hope, don't there is a way to beat the beast.  Will be thinking of you and wishing you the best.