SCC to Start - in Preauricular Lymph now - Radiation questions

hislove40
hislove40 Member Posts: 51
in Head and Neck Cancer #1
I actually posted this yesterday in skin cancer as that is how mine started - but now I'm on a new adventure :) 37 rad trmts. w/ 5 high intensity to the tumor sites in front of my ear at the end I think. Doc said this morning that she doesn't think I'll lose a lot of hair but still no indicator on if it will come back.

Hello -
I'm new but I've been dealing with this since November 2011. Got a sore that didn't heal - saw the doc within 7-10 days of it to get antibiotics - just figured it was infected - she didn't want to touch it - sent me to dermatologist who did biopsy. BTW, it was on my left temple. It was SCC, so I was scheduled for Mohs surgery - did that and after 2nd surgery was all removed with clean margins but the tissue was very inflamed and he said their was nerve invasion and the tumor was very aggressive. From the time it was biopsied at the derm. offc. to the time of the mohs surgery, it grew back 2x or more the original size and looked like a donut on my head. They sent me home with an open wound on my head and the next week I had a skin graft. One month later got radiation treatments for 6 weeks. No real side effects other than sunburn but that should be ending 3/3/12. In the meantime, they do all these tests and find on the pet scan 2 suspect areas in front of my left ear - I go in for biopsy in the hospital and it comes back malignant. It is in my preauricular lymph node. Now they have made a mask that will hold my head taut on the radiation table and say that this radiation will go to all lymph nodes in my head and neck (CT scan was done to see exactly where it all is). This radiation is much more invasive and I just found out Friday that I will lose a good chunk of hair on that side - not saying if it will grow back - will have sore throat and possibly sores in mouth - got dental completed with flouride- said I will probably feel fatigued and have weight loss. Since this is so much different than the original radiation treatments, I was wondering what to expect. We have not started yet on the head and neck radiation - still only on my temple but I'm guessing I'll start tomorrow 2/28/12. I'm 51 female almost 52 and have been healthy my whole life - BUT my 2 younger brothers and both of my parents have had forms of skin cancer - never spreading. One brother even had a melanoma. Yes, were were always on the lake, boating, fishing, swimming, skiing, tubing and I will be the first to admit very stupid about the sun my whole life :). Does anyone have any input? Did you have to get a wig? Did it spread further? Is it common to have radiation for cancer that cannot be seen like this or do you normally see surgery performed? What do you do for radiation burn? How bad are the side effects?
Cathy

Comments

  • CaKat
    CaKat Member Posts: 28
    #2
    What I experienced
    When I had radiation, it was without chemo. Sounds like what you describe. 35 visits. Got a feeding tube before the process started. I was able to eat via mouth and sometimes use the tube. Didn't have any hair fall out. Skin got red, but Aquaphor is excellent. Mouth and throat got sore, but, for me, not horrible.
    As I understand it, radiation is the standard. Hopefully this will take care of it for you!
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    First of all
    This isn'tyour fault. SCC is not caused by sun exposure. Basal ccell cancer is. So go bacck and ski to your heart's content!

    You have a tough situation, and the aggressive treatments prescribed are an indication they really need to get after this to cure you. Conservative treatments have shown they aren't going to get the job done.

    If their target is the preauricular area, you are getting a higher center of irradiation than most of us who post on the board, so i will warn you that my rad experience (and those others who will post) may be a little different than what you see. I've been radiated twice, and found the two eperiences to be completely different, one from the other.

    I wouldn't worry abouta wig just yet:) It will become obvious to you if you need one. When hair is lost to radiation, it likely won't grow back, but don't invite trouble here. You are going to figure these things out on the fly. I lost most of my beard the firsttime I went through radiation Permanently. This latest time, I notice I may have only afew hundred whiskers left. Don't have to shave much, that's the benefit.

    You may or may not burn. I didn't with either treatment. My skin is tougher than leather. I don't ever sunburn. But others get pretty burned. See how it goes, they know how to treat these problems.

    I can see you are pretty much freaking out right now. Not to worry, we've all been there. Others will help answer questions, and there's plenty of time to ask more.

    Hope this helps a bit. Sorry you have to be here.

    Pat
  • hislove40
    hislove40 Member Posts: 51
    #4
    CaKat said:

    What I experienced
    When I had radiation, it was without chemo. Sounds like what you describe. 35 visits. Got a feeding tube before the process started. I was able to eat via mouth and sometimes use the tube. Didn't have any hair fall out. Skin got red, but Aquaphor is excellent. Mouth and throat got sore, but, for me, not horrible.
    As I understand it, radiation is the standard. Hopefully this will take care of it for you!

    Thank you CaKat
    Thank you CaKat - Yes, I hope this does it and it is all a blip on the screen. They have not mentioned anything about a feeding tube so my guess is they are not going to do that with me. My cancer is in the preauricular lymph node but they need to treat all subsequent lymph nodes so that's the reason for the rad down the left side of my face and neck. There were 2 small spots that showed up on the pet scan right in front of my ear - got my cd of it and it was weird to see me spinning around with all my insides but pretty cool :). They did give me aquaphor but it was too greasy with my hair in it all the time and I asked for another - so she gave me xclair - much better! Last time I went it, she apparently was a little concerned about the site and gave me silvadene cream, which I picked up today so have only used the one time. It's good to know that this is what is standard. I really appreciate your input :))))
  • hislove40
    hislove40 Member Posts: 51
    #5
    longtermsurvivor said:

    First of all
    This isn'tyour fault. SCC is not caused by sun exposure. Basal ccell cancer is. So go bacck and ski to your heart's content!

    You have a tough situation, and the aggressive treatments prescribed are an indication they really need to get after this to cure you. Conservative treatments have shown they aren't going to get the job done.

    If their target is the preauricular area, you are getting a higher center of irradiation than most of us who post on the board, so i will warn you that my rad experience (and those others who will post) may be a little different than what you see. I've been radiated twice, and found the two eperiences to be completely different, one from the other.

    I wouldn't worry abouta wig just yet:) It will become obvious to you if you need one. When hair is lost to radiation, it likely won't grow back, but don't invite trouble here. You are going to figure these things out on the fly. I lost most of my beard the firsttime I went through radiation Permanently. This latest time, I notice I may have only afew hundred whiskers left. Don't have to shave much, that's the benefit.

    You may or may not burn. I didn't with either treatment. My skin is tougher than leather. I don't ever sunburn. But others get pretty burned. See how it goes, they know how to treat these problems.

    I can see you are pretty much freaking out right now. Not to worry, we've all been there. Others will help answer questions, and there's plenty of time to ask more.

    Hope this helps a bit. Sorry you have to be here.

    Pat

    Thank you Pat!!!
    I sure appreciate your input Pat :). I really am not freaking out but I do have tons of questions all the time. It was funny when they were making my mask and I asked if I would lose any hair and they said yes - I pouted and they thought I was going to cry. I told them that it is what it is and it's all pretty unavoidable and I'm fine. The radiation oncologist didn't seem to think I was lose much hair - just a thin line. Anyway, whatever happens happens and I will deal with it.

    Your reply was interesting as I thought squamous cell carcinoma was caused by sun damage too....so I thought that's what happened. My family is very fair skinned - not my kids who are olive skinned - but my parents and siblings. We all loved the active outdoor life and I have dogs that don't stay outside but I play with them outside all the time.

    This is a great group of people and it does help to talk it out. I do believe you are right that they are aggressively going after the lymph node. I'm grateful in that I thought I would have to have surgery again but they said this could still end up being a possibility if this was not successful. I'm burning on my temple where the treatment is done Monday, and they think I will burn as I'm white white.

    It's okay that I have to be here - you all do so I'm no better than anyone else. Everyone's journey is a little different I guess :))))

    Thank you!!! :)
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #6
    Sorry
    Sorry for the situation but glad you found this site. Some things sound very familiar. just a different location on my face. Mine was on the right upper lip, they removed and inch and I had 50 stitches, has healed well. Aquaphor was what worked for me, I know it was greasy, sometimes I would lay a clean cotton hankie over it. Glad that you have silvadine already, if the burn gets real bad use it (it did an amazing job on my mothers burns). Got to treatment with a clean face, no creams. There is a Superthread that comes up weekly, so much good information, you will want to check it out. I lost hair the first time, all at the nape of my neck, it grew back. The second time it is coming back slowly, a chunk behind my left ear. My scalp did itch, I can't imagine wearing a wig close to the burn area, you might check out scarves. Best wishes to you, let us know how your treatment is going.
  • hislove40
    hislove40 Member Posts: 51
    #7
    KTeacher said:

    Sorry
    Sorry for the situation but glad you found this site. Some things sound very familiar. just a different location on my face. Mine was on the right upper lip, they removed and inch and I had 50 stitches, has healed well. Aquaphor was what worked for me, I know it was greasy, sometimes I would lay a clean cotton hankie over it. Glad that you have silvadine already, if the burn gets real bad use it (it did an amazing job on my mothers burns). Got to treatment with a clean face, no creams. There is a Superthread that comes up weekly, so much good information, you will want to check it out. I lost hair the first time, all at the nape of my neck, it grew back. The second time it is coming back slowly, a chunk behind my left ear. My scalp did itch, I can't imagine wearing a wig close to the burn area, you might check out scarves. Best wishes to you, let us know how your treatment is going.

    Thank you KTeacher :)
    I'm glad I found this site too :). My closest friend is an OR nurse now hospital administration - but she's had lots of exposure to the oncology patients. She talked a little about a department where they help people with wigs, scarves, even eyebrows and eyelashes. She's an amazing friend that talked about possibly even using hairpieces if it comes down to it since it shouldn't be a large area. It's funny how superficial I didn't think I was but come to find out I am....HA! I'm going to wait until all treatment is complete before doing anything about the hair and pretty much stay to myself while it's going on. My first grandbaby (my oldest son and his wife) - a girl - is due in July - well, the end of June but I'll be going in July....and my daughter is getting married in Florida right before Thanksgiving. So there are some important events this year that I'd like to look presentable. The most important thing is getting cured I know. My hair is already coming back to the temple area in some spots so I think that is a pretty good sign. Thanks so much for your input :))))
  • phrannie51
    phrannie51 Member Posts: 4,716
    #8
    hislove40 said:

    Thank you KTeacher :)
    I'm glad I found this site too :). My closest friend is an OR nurse now hospital administration - but she's had lots of exposure to the oncology patients. She talked a little about a department where they help people with wigs, scarves, even eyebrows and eyelashes. She's an amazing friend that talked about possibly even using hairpieces if it comes down to it since it shouldn't be a large area. It's funny how superficial I didn't think I was but come to find out I am....HA! I'm going to wait until all treatment is complete before doing anything about the hair and pretty much stay to myself while it's going on. My first grandbaby (my oldest son and his wife) - a girl - is due in July - well, the end of June but I'll be going in July....and my daughter is getting married in Florida right before Thanksgiving. So there are some important events this year that I'd like to look presentable. The most important thing is getting cured I know. My hair is already coming back to the temple area in some spots so I think that is a pretty good sign. Thanks so much for your input :))))

    Superficial...me too it seems
    I had to lecture myself last night...I've never thought of myself as superficial, yet last night I found myself worrying about what my husband will think of me...fretting about what it will be like to come back to work (which I am determined to do) and if people would stare at me...and here I am about to enter the fight of lifetime. Maybe because we're women?? Like we're hardwired to want to be visually pleasing...I don't know...but I sure understand wanting to look presentable...I'm sure you will, tho. You have a good friend with lots of ideas...that's IF you even need ideas...you very well might not have to do anything at all.

    p
  • hislove40
    hislove40 Member Posts: 51
    #9
    phrannie51 said:

    Superficial...me too it seems
    I had to lecture myself last night...I've never thought of myself as superficial, yet last night I found myself worrying about what my husband will think of me...fretting about what it will be like to come back to work (which I am determined to do) and if people would stare at me...and here I am about to enter the fight of lifetime. Maybe because we're women?? Like we're hardwired to want to be visually pleasing...I don't know...but I sure understand wanting to look presentable...I'm sure you will, tho. You have a good friend with lots of ideas...that's IF you even need ideas...you very well might not have to do anything at all.

    p

    I'm sorry Phrannie - didn't see this

    I'm apparently much more superficial than I thought :). I'm with people a lot in my work and don't really like questions about those sorts of things. Yes, I think being women has something to do with it - but I think we know also what kind of world we live in - and looks do matter. Here's the thing though - there just aren't any choices here except to take care of this cancer stuff I mean. There are lots of things we can do to make ourselves look better, but the main thing is staying alive. Don't worry about hubby - my bet is he's thoroughly smitten :))))

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