New to CSN Throat Cancer stage IV
I very recently discovered that I am faced with Stage IV throat cancer. The origin site will be further explored later this week. Based on what I have read there are two basic options for treatment, chemo or neck dissection followed by radiology. If I go with the neck dissection does the radiation alone kill the cancer in my throat ? I am in Virginia and looking for Drs and the right facility. I have a good ENT but I don't have a dedicated Oncologist yet. ENT advised that I find a radiologist?? Any information would be greatly appreciated. Thank you, Max
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Welcome to the forum Max. Sorry, you have to be here but I hope you get the support you need. I had throat cancer also and my ENT's office set up appointments with radiation and chemo docs and coordinated the whole thing. I would say if your ENT is not setting things up for you then I would find the best cancer center closest to you that you are satisfied with and has a good rating and get them to handle all aspects of your treatment including a speech therapist that will watch over you in this process to monitor swallowing, speech, etc. I received the standard treatment of 35 rads and chemo treatments in the beginning, middle, and at end of radiation. I have never heard of neck dissection as a treatment for throat cancer unless it has spread to the nodes then they will also operate and remove lymph nodes (dissection)to eliminate all cancer. Have you had CT scans and have you also had a PET scan? I had an advanced stage of throat cancer in 2012-13 and received the standard treatment for it. Be aware to put on plenty of weight before you start treatment and I would recommend if they offer it get a feeding tube and a port or PICC line installed. Ask the treating doctors about these. Keep us updated, we will help.
Take Care God Bless-Russ
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Hey Max. It all starts in your mind and attitude. I'm in Texas, in fact Houston, where MD Anderson is the king of cancer treatment. Just about every doctor creates their patient's regimen based on the research that continuously pours out of MDA. Any oncologist you seek out should be a bonafide expert in Head and Neck cancers. Call around to every doctor's office you can reach and pointedly ask them about their treatment record with other similar cases. I was Stage 4 a few months ago, had a tonsillectomy, recovered quickly and went straight to 33 rounds of radiation and six rounds of chemo. It was a hard push but it's all in your mind. You must look at cancer as a teacher who is teaching you a valuable lesson. Will you listen and work with it until you no longer need its influence in your life? Or will you become a blameless victim? The latter usually pass away so don't fall for that trap. You are the driver of your destiny. I'm now 100% clear of cancer and learned my lesson that cancer is not an enemy. It became an amazing teacher to me.
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Blameless victim?? And the losers pass away ?? Strange and hurtful way to speak of the disease that kills over 600,000 People in the US every year. Your comments become offensive here.
Crystal, very sick , in Hospice.
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I was simply referring to the fact that we make choices in life and our life behaviors eventually come up and bite us in the behind. I made some very terrible choices when I was younger. Having sex with every girl I could get my hands on. I nearly paid the price with my life. I never approached my cancer treatment like I was a victim. I took full responsibility for why I contracted HPV and later cancer. I have studied with gurus and spiritual leaders around this world. I have been connected to the other side intensely for the last 30 years of my life. I used my connections to the other side to fight and beat this cancer by admitting. I was fully at fault for all of it. Every guru that has walked this planet will tell you the same thing over and over again. You are not a victim. You are creating your world and your existence every single moment of your life.
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Max, I would say if you are satisfied with your care team and the plan they have for you and are confident that they have done all their homework in respect to your treatment plan then the sooner they can treat you the better. Cancer doesn't get smaller it only grows so the smaller they can find it and eradicate it the better. Do you have a complete plan you can share with us yet? And just curious as to where you are getting treatment, is it a cancer center or your local hospital, etc.? Keep us posted and we will help with anything we can here on the forum.
Wishing You the Best-Take care God Bless-Russ
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I had Tors and neck dissection in November 2017. This involved tonsils, part of throat, part of tongue and 21 lymph nodes removed. I had difficulties with a Kyle leak. Spent 10 days in hospital. One lymph node had cancer and all clear margins. After 6 weeks of recovery, went through 65 grays of radiation. Did not have chemo. Looking back I would have done chemo. Ended up with metastatic cancer in left lung. Had it partially removed. Told massive clear margins. No further treatment required. At my 9 month scan after lung surgery I was told it was back and terminal in April of 2019. Decided to try keytruda since it is easier on the body. Wasn’t supposed to survive 2019. 1.5 years latter I am NED. Only by Gods hand am I hear.
After surgery, stay ahead of pain. It’s very manageable. During radiation you will lose taste after 2-3 weeks. Everything I ate was covered with gravy but no taste. Just keep eating. I drank tons of water and put on 13 pounds during radiation. Managed pain starting about 3 rd week with Tylenol. Didn’t need anything stronger until week 5. Radiation still keeps working after completing.
So my thought looking back, throw everything in the tool chest at it, obviously with your Oncologist team recommendations. Trust your team! Mine was at Hellman in Pittsburgh.
God bless! And have a quick recovery…it really is a very small portion of your life. In a year you will be thinking it all went quick.
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Hello Crystal, No worries. I wasn't offended at all. But it is nice that you are so considerate of other's feelings. I am stage IV with two lymph tumors in my neck and an unknown primary. Stage IV was established because of the number and size of the tumors in my neck. I am trying to get a referral to Johns Hopkins for a second opinion. Thankfully I have no real pain at this time.
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My suggestion is to find a cancer center asap and get them your scans/test information asap and design a plan. Don't ala cart providers. It can be paralyzing so make calls today. Ask your doctor about others with the same diagnosis and where they went for treatment locally but this is your life so don't be afraid to reach out to docs out of the area. Good luck and keep us posted as someone on here has likely had the same questions/pain/treatment and may be able to offer help!!!
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Thanks for your comment and I appreciate all of the comments I have received. I was at Johns Hopkins last week with a team of 5 doctors who met with me all at once. I was impressed with their availability as we spent 3 hours together. I have decided to go with their recommendation and I will have exploratory surgery there to try to determine the location of the primary.
They propose a chemo-radiation cocktail for treatment. We'll see.
The second opinion I am getting concurrently from INOVA in Fairfax VA. I have a meeting with them on Friday to hear their plan.
I explained to both that I need to keep working until it is not possible. So I am searching for a unicorn here...the most effective treatment that is least intrusive.
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Well, that's a big problem in our particular cancer, Max. Because of the locations of where it occurs, our very basic functioning of Life is on the line: Breathing, swallowing / hydration/ nutrition/ ....Voife/ speech, Vision, ..balance,... Taste, hearing, etc. It's all central to hear & neck.
Other cancers don't experience all that we do.
So, I wish you good luck with the second opinion, but the first priority has to be finding and treating the primary makignancy. Otherwise, all else is for naught.
crystal, in Hospice
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My husband asked me to look in his throat at the end of February, His tonsil was swollen and he had a swollen gland in the neck. He went to Urgent care the next day, was given antibiotics and instructed to follow up with an ENT. I called the ENT office and they saw him very quickly. He was sent for a CT scan the next morning (March 2) and it said suspected tonsillar cancer with lymph node involvement. He had a biopsy of the lymph nodes in his neck and they were positive for cancer. On April 13th, he had a TORS and radical neck dissection. The preliminary pathology report showed clear margins, but the final report showed that the cancer had broken through the capsule of ONE out of 4 positive lymph nodes. He had a total of 44 lymph nodes removed. He started a 6 week course of chemotherapy (Cisplatin) and radiation on May 16th. He had a feeding tube placed before starting, and it has been a blessing. His surgeon was Dr Blanco at the Greater Baltimore Medical Center in Towson , MD. We recommend him highly.
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