Best doctor/hospital for laryngeal cancer (recurrence)?
Hey everyone, I posted last week that we saw growths on my vocal cords that were new since December. Biopsy confirmed that the cancer is back. Came back in less than 6 months after I finished radiation. Wish I would've done chemo, too. CT scan showed that it hasn't spread anywhere outside of my vocal cords. My doctor is recommending a total laryngectomy. That isbthe one thing I did not want. I'm 30! And a teacher... I can't see myself talking and breathing through a stoma for the rest of my life. Hearing this news.. I think this was the first time I actually cried. I didn't even cry after my first diagnosis because I was confident I'd beat it since it was early stage and I'm young. Last week I was worried about just having surgery to remove the growths and I came to terms with it and figured I could ask for chemo too and still beat it. Now living with a stoma.. seems so extreme to me. I would like more options and to talk to more, well respected doctors. I'm currently seeing an otolaryngologist with UPMC in Pittsburgh. I am going to try to get a second opinion at Cleveland Clinic. My dad found two articles from two hospitals discussing a prostheses larynx?? Couldn't find much else about it though. Anyone have any recommendations for one of the best doctors/hospitals in the country for this??
Comments
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University of Chicago
Sorry to hear about your journey. My husband did not have a 2nd bout with cancer, but we were very pleased with the University of Chicago. My husband's diagnosis was scc of the piriform sinus. T1N2bM0. Not laryngeal but hypopharyngeal, a pretty rare location. He is 5+ years after treatment and doing great. His Drs. were, Dr Haraf, Dr. Portugal and Dr. Desouza. The cancer navigator was wonderful and got us appointments within days. There were several other patients there for second opinions and reoccurence. Wishing you healing and health!
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aak16, I am so sorry for you
aak16, I am so sorry for you to go through this again. I do think your idea of 2nd opinion is a good one. It hasn't spread so that's also good. For what it's worth, there is a woman who goes to regular gym classes who has had a laryngectomy. I haven't bumped into her yet but a family member was telling me how well she does.
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Memorial Sloan Kettering In NY
Memorial Sloan Kettering in NY is a very well-known Cancer center. I am wondering if you would be a candidate for immunotherapy. I know there are many immunotherapy drugs that are very promising. Some of the criteria to receive this treatment is a reoccurrence or distant metastasis. We tried to get my husband on this treatment but he did not qualify because he did not have a known primary, only the tumor mass in his neck, HPV-16+, stage IV.
My Husband used Dr. Ian Ganly and Dr. Daphna Gelblaum at MSKCC.
Here is there Website: MSKCC.org Some of the top Head and Neck Doctors in the country are at MSKCC.
There is also Dr. Mark Urken, he has published many books on H&N cancer, he is very well known in the H&N medically community throughout the country. He is also located in Beth Israel Cancer Center in NYC. You can look these doctors up on line.
My husband went for 4 opinions before deciding.
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American Cancer Society
www.cancer.org/cancer/laryngeal-and-hypopharyngeal-cancer/about/new-research.html
Copy and paste the above link, it's the American Cancer Society for Laryngeal Cancer and new treatments, including clinical trails, target threapy, Chemo, radiation & Transoral Surgery. I will continue to do some research and send you links.
I hope this helps.
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Treatment in unofficial chicagoDarcyS said:University of Chicago
Sorry to hear about your journey. My husband did not have a 2nd bout with cancer, but we were very pleased with the University of Chicago. My husband's diagnosis was scc of the piriform sinus. T1N2bM0. Not laryngeal but hypopharyngeal, a pretty rare location. He is 5+ years after treatment and doing great. His Drs. were, Dr Haraf, Dr. Portugal and Dr. Desouza. The cancer navigator was wonderful and got us appointments within days. There were several other patients there for second opinions and reoccurence. Wishing you healing and health!
dear Darcy, just saw your post and saw my moms radiologists last name and wanted to write to you right away. My mom was diagnosed with stage 4 cancer and right now is undergoing induction chemotherapy before starting radiation and chemo with dr harAf. she just finished first cycle of chemo. We are very scared of radiation. What was your experience like in university of chicago? Did you look for second opnion? Any suggestions ? My head is spinning from all the questions I would like to ask you. Thank you in advance for all your input!!
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Dr Haraf and UofCEmilymoroz said:Treatment in unofficial chicago
dear Darcy, just saw your post and saw my moms radiologists last name and wanted to write to you right away. My mom was diagnosed with stage 4 cancer and right now is undergoing induction chemotherapy before starting radiation and chemo with dr harAf. she just finished first cycle of chemo. We are very scared of radiation. What was your experience like in university of chicago? Did you look for second opnion? Any suggestions ? My head is spinning from all the questions I would like to ask you. Thank you in advance for all your input!!
Emily,
We love Dr. Haraf and U of C. My husband was first seen in Grand Rapids, Mi. We went to U of M and U of C for treatment options and chose U of C and never regretted it. 5 1/2 years later life is great with minimal lasting side effects. My husband had ssc of the piriform sinus with 2 lymph nodes affected. T1N2bM0 stage 4, a very scary diagnosis and we were also very scared of the treatment, it was very difficult but doable. He also had induction Chemo for 6 weeks followed by 50 in patient radiation sessions with 24/7 chemo over a 10 week period. The doctors and nurses were all very knowledgable, helpful, supportive and really helped us through the difficult treatment. Everyone is a bit different in how well they tolerate radiation and the location of the tumor also affects outcomes. The drs at U of C are very good at listening and helping manage the side effects. I highly recommend them to anyone with a head and neck cancer diagnosis. Tell your mom there is hope and my husband and many others are proof. Have her follow the drs. orders, and check this site frequently for support, tips and many others in her posistion. She is not alone. I remember the way you are feeling, it is very overwelming and scary. We just had my husband's 5 year check up several months ago and we will see Dr. Haraf one more time next year. We will miss seeing him. Hang in there before you know it, your mom will be through treatment.
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Sorry t hear you are having to deal with this again
we live in the Boston area and I believe we have some of the best cancer doctors in the country. We went through beth Isreal and I cannot say enough good things about the whole team. Good luck
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Sorry to hear this...
aak,
I am really sorry to hear about this reoccurrence. Please do not blame yourself about not receiving the chemo in your previous treatment. In most cases the chemo adds only a small increase in probability of a beneficial outcome when combined with radiation, something like a 5% increase.
Honestly I have thought to myself if my cancer ever came back that I would possibly consider more surgery or radiation but I would probably pass on more chemo. It makes you very sick, weak, and a long immune recovery.
The impossible choices you had to make in the beginning of your cancer journey were the best choices for you at the time, period! Now you have new impossible choices to make and I will pray that God will give you peace as you go.
I was always told that the Cancer Centers of America were very good as well and there is one in Philly if that is near you, it sounded like you were in the northeast.
Best.
Jake...
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Sorry to hear
Sorry to hear that you have to go through this. I am a tonsil ssc survivor and do not have any experience. I remember meeting with a Larenx Ca survivor. She was using an equipment to talk, she was able to do a public speak using a small device (as a patient advocate). She looked very comfortable in communication. I have just searched for you. Atos medical has an instrument called provox handfree. You may want to check.
You will be in my thoughts and prayers.
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I am so very sorry for your
I am so very sorry for your pain. I'll be praying for you.
I believe Cleveland is closer to you than Philadelphia and Cleveland has a great reputation. Thomas Jefferson University in Philadelphia has a great Head and Neck center as well.
You can do this.
God Bless.
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Immunotherapy
BEFORE you/MD consider surgery/chemo, please carefully look into targeted therapy and immunotherapy.
Immunotherapy works amazingly well, but unfortunately only for about 20% of those treated. You may be among responders. If not, you would know in just 2-3 months or so, and THEN you can consider surgery and/or chemotherapy. Please ask about that, either FDA approved, or clinical trials. Combination immunotherapy works best.
Good luck!
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SimilarFrances_S said:Memorial Sloan Kettering In NY
Memorial Sloan Kettering in NY is a very well-known Cancer center. I am wondering if you would be a candidate for immunotherapy. I know there are many immunotherapy drugs that are very promising. Some of the criteria to receive this treatment is a reoccurrence or distant metastasis. We tried to get my husband on this treatment but he did not qualify because he did not have a known primary, only the tumor mass in his neck, HPV-16+, stage IV.
My Husband used Dr. Ian Ganly and Dr. Daphna Gelblaum at MSKCC.
Here is there Website: MSKCC.org Some of the top Head and Neck Doctors in the country are at MSKCC.
There is also Dr. Mark Urken, he has published many books on H&N cancer, he is very well known in the H&N medically community throughout the country. He is also located in Beth Israel Cancer Center in NYC. You can look these doctors up on line.
My husband went for 4 opinions before deciding.
Frances, My tumor is also HPV- 16+. I got 4 opinions and no one mentioned immunotherapy. I was originally diagnosed at stage T2 but the doctors are wondering if I was stage T3 and that's why the cancer came back to quickly or never actually went away. So I could be at a stage 3 now but it's hard to tell. Memorial Sloan Kettering was one of the places I went for another opinion.
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BostonPclark21st said:Sorry t hear you are having to deal with this again
we live in the Boston area and I believe we have some of the best cancer doctors in the country. We went through beth Isreal and I cannot say enough good things about the whole team. Good luck
I actually went to Boston for one of my additional opinions. Seems like most doctors think a partial laryngectomy is the way to go.
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hands freeMavish said:Sorry to hear
Sorry to hear that you have to go through this. I am a tonsil ssc survivor and do not have any experience. I remember meeting with a Larenx Ca survivor. She was using an equipment to talk, she was able to do a public speak using a small device (as a patient advocate). She looked very comfortable in communication. I have just searched for you. Atos medical has an instrument called provox handfree. You may want to check.
You will be in my thoughts and prayers.
If I end up needing the total laryngectomy I will definitely be trying the hands-free device if I can use it!
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immunotherapycorleone said:Immunotherapy
BEFORE you/MD consider surgery/chemo, please carefully look into targeted therapy and immunotherapy.
Immunotherapy works amazingly well, but unfortunately only for about 20% of those treated. You may be among responders. If not, you would know in just 2-3 months or so, and THEN you can consider surgery and/or chemotherapy. Please ask about that, either FDA approved, or clinical trials. Combination immunotherapy works best.
Good luck!
To me it looks like the trials with immunitherapy are combination treatments with radiation. I already had radiation so getting more of that is really discouraged...
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Update
Thanks to all of you who have commented. In additional to my intiial recommendation at UPMC, I ended up getting three additional opinions- Cleveland Clinic, Memorial Sloan Kettering, and Massachusetts General in Boston. Basically I need at least a partial laryngectomy. Thankfully I've joined some laryngectomy support groups on facebook and the members have made me realize that this surgery doesn't ruin your life. I will go into surgery on March 29th at Cleveland Clinic hoping for a partial but prepared for a total if the doctors get in there and decide a partial won't cut it.
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