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Salivary Gland Cancer - Need Hope

newbride
Posts: 142
Joined: Jul 2009

My husband was diagnosed a few months ago with a salivary gland cancer, however, instead of it being in the usual places it appeared in the sinus cavity. He had surgery and the tumor was removed. However 9 weeks later on our honeymoon he was having nose bleeds and difficulty breathing through his nose. Upon our return the surgery discovered the tumor came back - this time in his nose. The doctors are at a loss as they say this type of cancer is usually confined to the mouth area not the nasal area and is usually low grade and when removed does not come back quickly. However this time grew double it size in a matter of 4 days! They went in and did more surgery including removing his entire upper jaw. They are planning on starting radiation and chemo in about 2 weeks once the swelling goes down. They feel that since this acted so aggressively they need to treat aggressively and may even do double doses of chemo.

For the most part I am handling this well - scared to death, but trying to stay positive and optomistic and have faith. But, I am finding it hard to deal with on the side that no one can give us answers and even support groups usually are for people with common cancers - I'd love to find someone who has a "rare" head or neck cancer that knows what we are going through.

Also, as a caregiver, does anyone have suggestions for me to help him. He doesn't open up much to me about what he is going through.

coachL
Posts: 12
Joined: Jun 2009

Dear newbride,

So sorry to hear your news. I am praying for you and your husband. My husband was diagnosed April 8 , 2009 with stage 4 tongue based cancer with spread to both lymph nodes. He has just finished 4 rounds of intense chemo(inter-arterial) and 35 radiation treatments this week on Wednesday. He is healing now.

My husband has been very quiet throughout. Over the past 3 months he occasionally would want to talk about the reality of what he was going through. I am sure you just being there is what he needs most. He will speak about things when he is ready.

The road you must travel here looks rough, but you can do it! So many on this site have gone through so much and are a great encouragement to many. You are already ALL your husband needs.

If I can be of any help to you in terms of treatment and what we went through, please let me know.

coachL

newbride
Posts: 142
Joined: Jul 2009

Thanks...I know being here for him matters. Yesterday we had a nurse come in to change the bandages on his leg (he had skin grafting since they took bone from his leg to recreate his jaw which was removed) today the nurse did not come and I had to do it (that's fine I already did his arm during the last surgery). He said today's was wrapped better and more comfortable - I told him it was because I've probably done it more than the nurse did since she asked me for the order of the guazes, wraps, dressing, etc. He said "No, today it was done with love". I thought I would lose it.

The hardest part I think is that during what is suppose to be the happiest time for us is the hardest -- I went through the surgery, etc during the last weeks of planning our wedding, then it all came back immediately upon return of the honeymoon.

I keep telling people we are making sure to get rid of the "in sickness" part of the vows so we can go onto the "in health" part.

katona
Posts: 5
Joined: Jun 2009

where are you having your treatment i was diagnosed with tongue cancer and had chemo and radiation at the Beth Isreal in Boston. Treatment is very difficult . You might need someone to talk to yourself usually the oncology dept has therapists and psychaitrist to help people deal with the stress.

Good LUck

katona
Posts: 5
Joined: Jun 2009

where are you having your treatment i was diagnosed with tongue cancer and had chemo and radiation at the Beth Isreal in Boston. Treatment is very difficult . You might need someone to talk to yourself usually the oncology dept has therapists and psychaitrist to help people deal with the stress.

Good LUck

katona
Posts: 5
Joined: Jun 2009

where are you having your treatment i was diagnosed with tongue cancer and had chemo and radiation at the Beth Isreal in Boston. Treatment is very difficult . You might need someone to talk to yourself usually the oncology dept has therapists and psychaitrist to help people deal with the stress.

Good LUck

katona
Posts: 5
Joined: Jun 2009

where are you having your treatment i was diagnosed with tongue cancer and had chemo and radiation at the Beth Isreal in Boston. Treatment is very difficult . You might need someone to talk to yourself usually the oncology dept has therapists and psychaitrist to help people deal with the stress.

Good LUck

katona
Posts: 5
Joined: Jun 2009

where are you having your treatment i was diagnosed with tongue cancer and had chemo and radiation at the Beth Isreal in Boston. Treatment is very difficult . You might need someone to talk to yourself usually the oncology dept has therapists and psychaitrist to help people deal with the stress.

Good LUck

newbride
Posts: 142
Joined: Jul 2009

Hi we are working with the doctors at Mt Sinai in NY. I will talk to the therapists. I have also looked for local support groups for caregivers but they all seem to meet during the day when I am working

newbride
Posts: 142
Joined: Jul 2009

Thanks for the support. We did just find out that they are going to do double doses - they will admit him for 5 days and send him home for 9 for a cycle of 5 rotations. They will hit him with the radiation twice a day and do a 24 hour IV drip with the chemo drugs.

I did ask the doctor what stage this is but they told me not to worry about the stage and all we need to know is that it is high grade as opposed to low grade and that it has not spread to any other area of the body which is most important

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