Fungating Tumors

Options
nz2ph1
nz2ph1 Member Posts: 3
edited January 2023 in Head and Neck Cancer #1

Anyone dealing with these types of tumors?  I have searched the boards but didn't find much information.  My husband had surgery for oral cancer of the inside of his cheek as well as a neck disection.  After some mis-diagnosis about what the pockets of fluid were along the outside of his cheek, if was determined to be more tumors which broke through the skin leaving a large hole and califlower like structures around it that never heal.  Sorry for the graphic description. 

He could not do radiation because of this open wound but has tried several types of chemo with no success.  And another wound has opened on the opposite side collar bone.  This guy has really been through the wringer at 55 years old.  We did see a wound care 'specialist' but her advice was basically useless and not one doctor, including the one at Johns Hopkins, seems interested in these wounds. 

I've been reading the boards since last year at this time and so appreciate everyone's advice.  While I don't wish this condition on anyone, I sure would like to connect with anyone going through something similar.  These wounds are rare, but slightly more prevalent in HNC patients. 

Comments

  • rsp
    rsp Member Posts: 103 Member
    #2
    Options
    Wish I could be helpful...

    Hello, and I am so sorry that your husband is going through this.  While I can't offer you any help, I was wondering what doctor you saw at Hopkins?  My husband did not have any fungating tumors, but he was treated by a wonderful Dr. at Hopkins for SCC at the base of his tongue. The doctor's name is Dr. Harry Quan.  He is extremely talented, knowledgeable, and passionate about what he does, and I would highly recommend him.  I am sure if he can't help you, he certainly could steer you in the right direction. 

    It must be so frustrating not being able to find the correct doctor to help your husband.  The people on this site are wonderful, and I hope someone can give you some advice or help you to find someone that can help.

    Renae

  • caregiver wife
    caregiver wife Member Posts: 234
    #3
    Options
    Fungating tumor

    Not fun.  Husband had fungating tumor wrapped around and involving his carotid artery.  You do not say what chemos your husband has had.

    We have been very fortunate to have amazing doctors to work with.  How are you managing his open wounds without a good wound doctor, if you do not mind me asking.  We were going to see wound doctor at least once a week for a while.

    Willing to share any way I can.  I totally understand being alone dealing with this.  I didn't even trust the nurses on the oncology floor at the hospital to dress his wound.  

    Feel free to private message me, as well as posting to the board.

    A fellow caregiver,

    Crystal

     

  • nz2ph1
    nz2ph1 Member Posts: 3
    #4
    Options
    caregiver wife said:

    Fungating tumor

    Not fun.  Husband had fungating tumor wrapped around and involving his carotid artery.  You do not say what chemos your husband has had.

    We have been very fortunate to have amazing doctors to work with.  How are you managing his open wounds without a good wound doctor, if you do not mind me asking.  We were going to see wound doctor at least once a week for a while.

    Willing to share any way I can.  I totally understand being alone dealing with this.  I didn't even trust the nurses on the oncology floor at the hospital to dress his wound.  

    Feel free to private message me, as well as posting to the board.

    A fellow caregiver,

    Crystal

     

    Thanks for the reply!  My

    Thanks for the reply!  My husband has been through a number of treatments- Cisplatin, Carbo, Ketruyda, Taxil, don't even know the name of the oral chemo he is currently taking but the docs suggested he stop.  His last pet scan, which was probabaly two months ago, showed disease progression but not below collar bone, where this baseball size tumor is located.  I am dumbfounded that none of the doctors are addressing these two open wounds.  No instruction on dressing, no treatment, nothing.  When I asked his surgeon about removing the baseball he said if he did that it would result in a open wound that wouldn't heal, which I am pretty sure is what we have now anyway!  Surprisingly, our feeble attempts at managing these have not resulted in any infections. I also asked about cutting off the blood supply to these monsters, but the doc just waved that idea off.  Taking this cancer show on the road will be a challenge, but we have clearly out-grown the local treatment centers.  Praying for some better management from Philadelphia docs.

  • nz2ph1
    nz2ph1 Member Posts: 3
    #5
    Options
    rsp said:

    Wish I could be helpful...

    Hello, and I am so sorry that your husband is going through this.  While I can't offer you any help, I was wondering what doctor you saw at Hopkins?  My husband did not have any fungating tumors, but he was treated by a wonderful Dr. at Hopkins for SCC at the base of his tongue. The doctor's name is Dr. Harry Quan.  He is extremely talented, knowledgeable, and passionate about what he does, and I would highly recommend him.  I am sure if he can't help you, he certainly could steer you in the right direction. 

    It must be so frustrating not being able to find the correct doctor to help your husband.  The people on this site are wonderful, and I hope someone can give you some advice or help you to find someone that can help.

    Renae

    We were hopeful about Hopkins

    We were hopeful about Hopkins, but the doctor (a younger woman whose name escapes me) had very little to say - definitely not passionate.  She stared at her computer, listened to my husbands lungs, had zero interest in the visible tumors, and hustled us out the door after about 20 minutes.  She said she would "map" his tumor and see if there were any targeted drugs he could try. She had one clinical trial to offer, but it was currently on hold.  She was not familar with a number of things I asked about (learned from Dr. Google) and googled them herself becasue she didn't really belive me.  We were not invited back - treatment was tossed back to our local oncologist. I have heard many good stories about Hopkins, so I think we just drew the short straw that day with the doctor we got.

    The people on this site ARE wonderful - truly inspiring.  I have learned so much here - I wish my husband would join, but he is a head-in-the-sand kind of guy, unfortunately.

  • rsp
    rsp Member Posts: 103 Member
    #6
    Options
    Please keep us posted

    I am so sorry you did not have a good experience at Hopkins.  Good luck with the new doctors in Philadelphia, and please let us know how your husband makes out.  

    I can sympathize with you about your husband refusing to get on this site.  My husband was the same way.  He has never been on here, but I get on EVERY night (and have since last year when my husband was diagnosed).  I have learned SO MUCH, and have passed many comments on to my husband.  He is interested in listening to me when I tell him certain things I read about, so that is good enough for me.

    I will be thinking about you and your husband and praying he gets some answers soon.

    Renae  

  • hepkess
    hepkess Member Posts: 6
    #7
    Options
    Ulcerated and fungating non-bleeding malignanat appearance

    I just had an endoscopy of my throat and the results were "An uscerated and fungating non-bleeding 3 cm mas of malignant appearace was found in the upper third of the esophagus. This was just preliminary and I havne't seen a specialist as yet, but reading about fungating tumors leaves me little to gain understanding of what the heck it is I have. I had throat cancer above my larynix 6 years ago that was considered cured, now this. I'm not looking forward to the treatment, but I am not exactly sure what is gooing on right now. Fungating seems to be rather ominous. 

    Anyone ever have anythning similar? 

  • nsahota13
    nsahota13 Member Posts: 1 *
    #8
    Options

    Hi If you don’t mind me asking, how’s your husband now???

  • Stephie75
    Stephie75 Member Posts: 185 Member
    #9
    Options
    https://csn.cancer.org/discussion/comment/1694734#Comment_1694734

    That poster was last active in December 2017. It would be one of those miracles if they actually were notified of this via email due to using the same one and repsonded.

    When I see things like this I often wonder as well.

    -Stephie

  • vickila
    vickila Member Posts: 1 *
    #10
    Options

    I have had success getting my fungating breast tumor to flatten out. Although I've been doing lots of treatments, both internal (mostly nutriceutical) and topical, I credit the flattening out to this: doxycycline, azithromycin and oral vitamin c. I got the idea to use this combination from a pubmed study. This site won't let me post the link, but the title is:

    Doxycycline, Azithromycin and Vitamin C (DAV): A potent combination therapy for targeting mitochondria and eradicating cancer stem cells (CSCs) - PubMed

    It worked in about a month. I had heard that it is best to pulse doxycycline. I continued this protocol until I got a runny bout of diarrhea. I decided that would be a good time to stop and rebuild my gut bacteria for a month. I've since just started on other systemic treatment (IPT) and immune building IVs. Since I stopped the doxy/AZT/vitC the fungating tumor has remained stable, but I've had other issues to deal with, like lymphedema. It's not a straight road. But I was encouraged by the flattening out of the tumor. 

    I found this forum post because I was looking to see if people found sunbathing to be beneficial for fungating tumors. I have done sunbathing, but can't tell if it helps or not. 

    Although this originated 5 years ago, I don't know if it will make a difference to those who first posted, but it might help someone. 

    Vicki

  • Julinha
    Julinha Member Posts: 3 Member
    #11
    Options

    Hi Vicki,

    https://csn.cancer.org/discussion/comment/1696866#Comment_1696866


  • Julinha
    Julinha Member Posts: 3 Member
    #12
    Options

    Hi Vicki,

    I am wondering how you are doing almost a year later from this post ??

    I had a lumpectomy in 2012 with regression in 2019.

    In spite of systemic treatments with Ibrance/fulvestrant, capecitabine/Navorelbine and latterly Everolimus/Anastrazole, 3 years on I have progression to the lymph nodes in various sites, the liver and the bone + the breast tumour penetrated the skin and is on the point of ulceration which I am dreading.

    Was radiotherapy ever suggested to you for the fungating tumour ??

    I too am struggling with lymphedema which is not responding to manual lymphatic drainage dammit....

    It would be nice to have a chat if you still visit the forum ??

    happy new year to everyone

    Julia

  • HeidiAnne
    HeidiAnne Member Posts: 1 Member
    #13
    Options
    https://csn.cancer.org/discussion/comment/1702738#Comment_1702738

    Hi Julinha,

    I too was very interested in Vicki’s post and hope that she will answer. I’m going to research the paper that she posted.

    Regarding your question about radio therapy - I have done radiation twice (on two different breasts!) for the fungating tumours and both times it helped initially, in fact they totally healed up, but they came back again later on the periphery of the radiation area do I don’t think it’s a long term solution.

    My question at the moment is this - does anyone go swimming in the sea and If so, how do you find that it impacts the fungating situation?

    Vicki was asking about sun exposure for the wounds but I don’t feel that it makes any difference.

    Im new here at the forum and very happy to be joining you all and wish everyone and very happy new year filled with good health and lots of courage and love. Xx

  • Julinha
    Julinha Member Posts: 3 Member
    #14
    Options

    Hello HeidiAnne.


    Lovely to hear from you, and thank you especially regarding my question on the radiation front, which from your experience sounds like a tiresome exercise in toxicity and with only temporary reward. 


    I am not sure that swimming in the sea would be beneficial to an open wound - a saline solution is one thing but the open sea is full of bacteria which could make the situation worse.   I live on the Atlantic which is icy cold even in summer, so no danger there, ha ha !!


    I also checked out the paper on Vicki’s protocol, and as it involves antibiotics the issue would be finding a practitioner willing to prescribe and administer the treatment.


    It would be SO interesting to know if Vicki went back to this therapy and to hear how she is doing as it sounds as though she is following the alternative route with this wretched disease rather than conventional protocols.


    Meanwhile I discovered a clinic called Tower Wound Care Center which specialises in fungating tumours, located in America, a tad too far away for me, but perhaps an option for others living with the problem who may still be following this thread, although I am finding it difficult to unearth any truly curative solution.


    Stay well. big hug, we can do this,

    Julinha

    xx

Discussion Boards