Head and Neck Cancer | Frequently Asked Questions

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wbcgaruss
wbcgaruss Member Posts: 2,374 Member
edited June 24 in Head and Neck Cancer #1

Head and neck cancer surgeon, Wayne Koch, answers frequently asked questions about head and neck cancers, including symptoms, risk factors, treatment and quality of life issues.. Learn more: http://www.hopkinsmedicine.org/otolar...

Take Care, God Bless

Russ

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  • Fiasco
    Fiasco Member Posts: 11 Member
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    CAn a punch biopsy or excision biopsy

    Be done on the lip with no nerve damage?

  • wbcgaruss
    wbcgaruss Member Posts: 2,374 Member
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    Hello, Fiasco, and welcome to the CSN H&N discussion forum.

    I have done some research and looked at quite a bit of information to find out exactly what is involved in these procedures. I would say the area you are looking at being affected by a biopsy, especially something like a punch biopsy is going to be very minimal. There is also the excision biopsy and the shave biopsy and in these cases, it would depend on how large of a sample was taken, but here again, this is supposed to be just a small sample large enough to determine cancer or not so the risk is going to be minimal. I think where the real possibility of nerve damage or scarring would come into play is if cancer is detected and there needs to be surgery to remove it and that would entail a bigger area thus a higher risk of nerve damage and scarring.

    So there is risk associated with almost any procedure. Any information you read about on these procedures outlines some risks. So you most likely will have no problems or damage or very minor is my guess. Speak with your doctor who is doing your particular procedure and they will be able to give you accurate information on your exact risk or lack thereof.

    Here is a web page with illustrations that explains it all…Mayo Clinic skin biopsy overview

    I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • Fiasco
    Fiasco Member Posts: 11 Member
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    Thank u so much for your response. Have u had any experience with a punch biopsy or an excision biopsy on the lip. I agree with everything u said but the problem is the doctors I am dealing with are not wanting to biopsy my lip other than shave biopsy I had in one spot on the upper lip. That showed actinic keratosis ( pre cancer). The doctor just wants to proceed with cryo and then maybe topical fluorouracil. At my last appointment I thought the doctor was going to cryo the upper lip but she cryoed the lower lip.now I am concerned about the possibility of missing possible cancer on the lower lip and I would really like to do more than a shave biopsy if that is reasonably safe from causing nerve damage.

  • wbcgaruss
    wbcgaruss Member Posts: 2,374 Member
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    Well, Fiasco, I think I have had both types of biopsies but not in the lip area.

    So you say your doctors only want to do a shave biopsy. Well, I am not a doctor but the lip area may be difficult to do a punch biopsy and a shave biopsy may be the standard way they do it for that area I don't know, did you question them on a punch biopsy?

    I am a little confused you say "I thought the doctor was going to cryo the upper lip but she cryoed the
    lower lip
    .now I am concerned about the possibility of missing possible
    cancer on the lower lip and I would really like to do more than a shave
    biopsy if that is reasonably safe from causing nerve damage."

    You got cryo on the lower lip but you say you are worried about missing cancer on the lower lip and you also say you thought on the last visit you expected them to cryo the upper lip but they did the lower lip instead so do you have pre-cancer on the upper lip also or a possibility of it?

    I think if they are treating pre-cancer it may be a good procedure to treat with cryo and then maybe topical fluorouracil. I did have some pre-cancer skin cancer and the dermatologist just froze that away and that's it. I did have a spot that was cancer-confirmed after the spot was removed and it tested positive for cancer. So that treatment was similar except no follow-up with topical fluorouracil.

    All the things you brought up here, at the next meeting with your doctor ask all the things you did here such as can you get a punch biopsy in that area is it feasible? Ask them why just a shave biopsy, is that the standard procedure for the area. Ask your doc you cryoed the lower lip and I thought you were going to do the upper why didn't you do the upper like I thought you were going to do. I am still a bit confused here do you have pre-cancer on both your upper and lower lip? And I am wondering is this on the outside or is it on the inside of your lips?

    I think maybe you need to communicate better with your doctor and he with you also. Write out all the questions on paper, anything at all you have a question on for your doctor that way you won't forget anything. Before you go any further ask all these questions you have and get your doctor to explain everything that is going on with your case so that before you proceed any further you have a complete understanding of what is going to happen next in your treatment and you understand your complete treatment plan and are completely comfortable with it.

    The big thing about cancer treatment is it should be a once-and-done thing. That being said I mean a plan for any cancer someone has whether it is a one-time procedure or multiple procedures and treatments to get rid of that cancer that someone has. You don't want to revisit this, meaning you don't want a recurrence. You want to get this the first time.

    In light of all this, the only other thought I have to offer is that if you are not comfortable with your treatment and are questioning many things go to another doctor for a second opinion. When you do he may completely validate the first doctor's treatment protocol in your case or not. Either way, you will have more input for your health decisions in this situation.

    Again I think I typed a lot and haven't said much but I hope it helps.

    Take Care, God Bless

    NEGU (Never Ever Give Up)

    Russ

  • Fiasco
    Fiasco Member Posts: 11 Member
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    • I have read numerous NIH and other studies regarding AK and cancer on the lip.
    • You are preaching to the choir regarding writing down my questions and asking many detailed questions.
    • I have also gone to multiple doctors and at this point all any of them want to do is the one shave biopsy on the upper lip that shows pre cancer and they are all saying I have AK
    • Not cancer but of course there is no guarantee of that.
    • The interesting thing is how the treatment ideas vary between doctors including do nothing, put cortisone on my lip ,cryo, pdt ( light therapy), fluorouracil and others.
    • After carefully considering everything I
    • Proceeded with cryo because the pdt can actually cause skin cancer in some cases,, and
    • Fluorouracil has questions regarding how well it actually prevents cancer.
    • However I am still not sure if cryo was the best. The reasons include the fact that there still is the possibility that cancer was present and the cryo may have missed it or not been
    • Strong enough to kill it all. It also may have missed some of the AK. It also may cause negative pigmentation issues.
    • I understand that what I apparently have at this point is minor compared to what most people on this site are going through.
    • But the facts show that AK on the lip can change to cancer and spread into the mouth.
    • That is why I have tried to take care of this now before it has a chance to get worse and spread.
    • At this time I think i have done all I can but as I have said I am not sure if this thing has really been
    • Taken care of or not and that is somewhat
    • Disappointing .
    • If anyone has experience with AK or cancer on the lip I would like to hear there opinions
    • Especially regarding fluorouracil , cryo and also on on the use of cortisone on ak ?

  • wbcgaruss
    wbcgaruss Member Posts: 2,374 Member
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    Well there, Fiasco, it looks like you are very well versed in this subject and the subject of your area of cancer and possible cancer and the ideas of note-taking, etc., so I guess my information was nothing new but we try, but with the long list you have sent to the forum, it is now quite evident to all.

    • OK, you Have: read numerous NIH and other studies regarding AK and cancer on the lip.
    • You are up to speed on writing down my questions and asking many detailed questions.
    • You have also gone to multiple doctors.
    • Also, treatment ideas vary between doctors which is not unusual and sometimes they are quite different, and other times just slight variations but at least you have plenty of treatment possibilities to consider and choose from including a watch and monitor and be aware of any changes and that would be a signal to see a physician again to make sure it isn't changing to cancer. I would recommend you get with your favorite physician whom you have seen for this malady and stay with them for ongoing monitoring to be able to address any changes as they occur.

    OK, so far you have proceeded with cryo, are questioning the use of fluorouracil, have reservations about the cryo you got, and you are concerned about the strength of treatment to kill it all,

    You are correct what you have is minor compared to what most people on this site are going through at this point but that is why you are here to find sure answers because as you note AK on the lip can change to cancer and spread into the mouth and then you would be another person on here with a more serious affliction and we don't want that, and should be avoided at all costs.

    It seems you have a lot of questions and are unsure of a lot of things in the respect of does a certain procedure works 100% of the time and even though I had treatment did it get it all and could it come back? You have read lots of articles and seen lots of doctors and you are very aware of your condition so it seems to me you are monitoring the situation heavily on your own.

    Trust me all of us on here have gone through similar things, what is the best treatment option, I want this cancer gone now and be sure of it and be sure it won't come back, is my doctor doing the right thing, using the right procedure etc.

    There is a lot that can't be guaranteed you just have to trust in a doctor you feel comfortable with and stay focused on this situation with them and then let yourself feel comfortable about it and relax.

    They tell you it is pre-cancer so I don't see any sense in getting a biopsy because if those you have seen are all saying pre-cancer then you wouldn't expect to find cancer there.

    There is apparently a line that gets crossed probably in many kinds of cancer where it goes from pre-cancer to cancer and the very same pre-cancer may never evolve to cancer so that is where the importance of monitoring with one physician and not jumping around is essential in my point of view.

    You have done your research and have been to numerous doctors but you may not find exactly the answers you seek so you may have to compromise with yourself a little but you are certainly at the point to make a decision and feel comfortable with it.

    I have done some research and found some videos and I hope they will be of interest to you and answer your questions. You may find treatment options other than what you know of or not but check the videos and any others on the preview panel you think might help.

    The only other thing I can offer is try posting on the Head and Neck Cancer Alliance community forum of Inspire H&N forum you may have some luck there I think the site may be well traveled.

    You may be able to join it here…

    https://www.inspire.com/groups/head-and-neck-cancer-alliance/

    Or here for sure https://www.headandneck.org/support-community/

    under the dropdown at the top under programs/online support.

    One of our members was doing ambassador work with them.

    Videos: Actinic Keratosis [Dermatology] 4 minutes

    Actinic keratosis removal, treatments, and prevention| Dr Dray

    15 minutes

    And lastly, a video that may help you as far as to treat or not to treat this situation and it is over an hour presentation which should cover quite a bit but I have not had a chance to watch it all yet.

    Join VisualDx for this webinar on Actinic Keratosis. This presentation is geared toward all interested in this subject matter, including MDs, DOs, NPs, and PAs.

    Our guest presenter:
    Anthony M. Rossi, MD, FAAD
    Memorial Sloan Kettering Cancer Center

    Actinic Keratosis: To Treat or Not to Treat (That is the Question)

    I hope you find something of value in all this.

    Wishing You The Best

    Take Care, God Bless

    Russ

    NEGU (Never Ever Give Up)

  • Fiasco
    Fiasco Member Posts: 11 Member
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    THanks for the videos and comments. The videos did provide some new info that was very helpful

    I agree with your comments and I agree I should be treated by one physician that I trust. I had one but she left her practice for an extended period and that is the problem because then when I tried to continue with the treatment plan with another doctor it was not the same although i was told it would be.

    . You are right I should be comfortable with what has been done but I am not comfortable. She was much more careful than the replacement doctor. Please understand I have had other procedures and other surgeries and I was careful about the doctor and the procedure or surgery and when done i was comfortable about what had been done whether it was perfect or not. Right now I wish I had done nothing because I am concerned the condition is not really taken care of and I am afraid I will have physical scars and all for nothing other than a waste of time and making doctors richer and myself poorer. Hopefully I am wrong but right now I feel awful about this situation. The good thing is that I can't do anything else because this has to heal for at least a month or more. Thanks for your help

  • wbcgaruss
    wbcgaruss Member Posts: 2,374 Member
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    Very well, then, Fiasco I hate to see yourself unsettled in this but I guess sometimes that's the way it is. But to stay upset about what may be ahead will many times, no will most times leave us with just ruined days and nights rather than the peace that can be had. No matter the concern, worry, or unsettledness of a situation that hasn't occurred yet will change it one iota. Your situation has been a little unsettled but don't look for perfection, it is rarely found in this life. Check out these sayings from a fellow in PA. Check out especially no.10.

    I personally trust in God and know he'll give me the abilities as he sees fit. And this song lyric from almost 75 years ago speaks to the idea of it.

    I Know Who Holds Tomorrow

    1. I don't know about tomorrow,
    I just live from day to day.
    I don't borrow from its sunshine,
    For its skies may turn to gray.

    I don't worry o'er the future,
    For I know what Jesus said,
    And today I'll walk beside Him,
    For He knows what is ahead.

    Refrain:
    Many things about tomorrow,
    I don't seem to understand;
    But I know who holds tomorrow,
    And I know who holds my hand.

    2. Every step is getting brighter,
    As the golden stairs I climb;
    Every burden's getting lighter;
    Every cloud is silver lined.
    There the sun is always shining,
    There no tear will dim the eye,
    At the ending of the rainbow,
    Where the mountains touch the sky. [Refrain]

    3. I don't know about tomorrow,
    It may bring me poverty;
    But the one who feeds the sparrow,
    Is the one who stands by me.

    And the path that be my portion,
    May be through the flame or flood,
    But His presence goes before me,
    And I'm covered with His blood. [Refrain]

    Wishing You The Best

    Take Care, God Bless

    Russ

    NEGU (Never Ever Give Up)

  • Kazsmiles74
    Kazsmiles74 Member Posts: 25 Member
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    Hello,

    I often do not chime in, but I do follow and appreciate all of the great information I read. My husband had SCC of the right tonsil(TORS surgery) and then a recurrence almost 5 years later(standard chemo/radiation 7/2024).

    Fiasco, It seems my husband and you have the same personality. He too gets angry for a while. It takes him time to process and say to himself the only way through this is to go through it. He has had a rough go of it and even now a year out every time he has a scan/follow-up visit they find something they are monitoring. It’s scary and so hard to stay hopeful and positive.

    We recently had a conversation and it was a tough one. I directly told him that his negativity and anger is affecting his quality of life. No, he does not need to be happy about what is going on… but in order to make the most of whatever time he has left(he is currently in NED, but has some difficult side affects he is managing). Not one person in life knows their expiration date. But we all have the ability to make the most of each day.

    My point to this is: Give yourself permission to be angry, frustrated, and negative. Say what you need to. Find someone that will allow that(this place is a good venting spot). But, don’t stay there. If you feel like it’s more than a day or two you’re in these feelings you NEED to take a pause and find something… ANYTHING that will bring you back to a good place. Trust me if you don’t you will be caught in a vicious cycle that will be so hard to get out of.

    Getting a cancer diagnosis is horrible! Treatment is awful! Our health care system is so incredibly frustrating! Cancer patients and their families are literally brought to their knees. But… we do not have to stay there. We must get up and live our lives and make those memories. We owe it to ourselves and our loved ones.

    I hope you find some resolve soon and that you get the answers you’re searching for.

  • Fiasco
    Fiasco Member Posts: 11 Member
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    THanks for the comments. I agree with what everyone is saying but doing other activities is very difficult when I can't be outside because I can't be in the sun.

    Although it is too early to know for sure it appears the actinic keratosis on my lips is returning. If anyone has had experience with any of the following treatments for actinic keratosis on the lips I would like to hear about their experiences: Fluorouracil, photodynamic therapy, scrape and electro burn, cryotherapy, or vermillionectomy. Thanks.