Did anyone not have a neck dissection and just have neck rads instead?
Hi, everyone. I was wondering if anyone had surgery to remove their tumor, had no suspected lymph node involvement, and was not given a neck dissection? At my second opinion post-surgery, they were careful not to criticize the first surgeon for not doing a neck dissection. They said it wasn't necessary in every case. Instead, they said they would do rads to the left side of my neck as well as the site of the former tumor, just in case.
I had one "suspicious" lymph node. It was considered suspicious because it was enlarged and it glowed to an SUV of less than 6 (which isn't a lot) on a PET. They did a fine needle aspiration of that one node and it was normal. They did nothing with any of my other lymph nodes when they removed the tumor (gums, upper left, in the back of my mouth).
Any thoughts?
Comments
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what i had
SM,
I had 1 lymph node removed in a procedure called a jugular vein dissection. It was cancerous. I also had surgery on the base of my tongue. It was cancerous. I did not have any other lymph nodes removed. I did receive rads across the neck and to my tongue (where ever the PET scan led them).
I am 4y 4m 14d post.
Many of the H&N members wonder about their treatment plan(s) for years to come.
Matt
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Rads first
I had radiation/chemo before I had surgery.
I was DX in March of 2012 with stage IV-a, primary tumor on the left base of tongue was 30 mm, and it had extended into the left cervical lymph nodes and oraphrangial wall so surgery was not even considered. I did have a surgical biopsy, instead of the fine needle aspiration they did a punch biopsy of the primary plus a bunch of other places. Felt like I'd had my tonsils reinstalled and the taken out using a disc grinder...
I went through 33 rads with weekly chemo sessions, had a PET scan three months later and a selective neck dissection shortly after that which removed 'minor, inactive disease'.
Surgery was discussed by the tumor board but because of the wide spread disease, the group recommended against surgery.
I'm 4 years out from the end of rads and am doing very well. I have an impressive scar along the left side of my neck where they did the selective neck dissection, but all in all back to a new form of normal
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I did....
...and I had lymph node involvement. My ENT/Onc/Rad Doc felt that rads would take care of the node on my neck. They also said, if....at the 90 day PET scan....the node was still active they would do a dissection. At the end of treatment, the node was gone, there was no activity happening in my neck....and it remained that way for three years. In October of 2015, I had a recurrence in the lymph nodes below where the original nodes were. I had a neck dissection in November, and more rads afterwards. This is very, very rare....for the cancer to languish for 3 years before becoming active again (so they told me).
p
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Only rad and chemo
I was diagnosed with Stage 4 Moderate differentiated invasive SCC of the (L) base of tongue, (L)glossopharangeal sulcus & (L)palatine tonsilla arch. There was also one suspicious lymph node. Surgery was ruled out. My treatment plan was 32 hyperfractioned IMRT doses of radiation (hyperfractionated meaning a full dose was split in half and given in two doses at least six hours apart - healthy cells have a chance to heal while cancer cells don't and the accumulated full dose for the day is lethal for the cancer cells). Radiation treatment was monday to friday with the weekends off. Duration - 6 weeks and two days. They radiated both sides of my neck, with a lower dose on the right hand side to treat for any mets that may have been underway but undetectable in the scans. I also had three doses of chemo - Cisplatin on Day 1, Day 22 and Day 42 of my treatment. I finished my treatment regime on May 6. On my last visit to my rad onco he scoped me and the tumor was effectively gone. He showed me before and after pictures the area where the tumor was. Visually the areas were almost back to normal and symetrical with the other side. I see him again on Aug 22 and am hoping he will order my 90 day scan so we can confirm what we are seeing visually and check the lymph system. We didn't have any discussions about second go-rounds or options, seemed to me like it was a one-shot deal for me. I intend to explore that with him when next I see him.
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I had neck dissection as a precaution.
I had a neck dissection on both sides as just a precaution. If cancer came back it can't go there. They took 48 on left and 38 on the right and all were clean. They did the biopsy right there while I was still in surgery. So when I woke up I had the results.
I never needed chemo or radiation. I had a very good surgeon and have only some numbness on the left side from my ear to my chin. I have heard of many that have been disfigured and many can't raise their arm above the shoulder. I have no issue with that. I personally believe if they are in there at go ahead and remove them. For me, they had to cut my neck from ear to ear anyway so they were there and it only took about an hour to do both. For me, I am very glad they did.
Bill
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No surgery
My hubby did not have surgery for his class IV SCC tonsil cancer. He had one lymph node involved. Treatment was 7 weeks of chemoradiation with cisplatin and IMRT to both sides of the neck. At 11 months out from treatment, he is NED and doing very well. Although his ability to eat is much improved, in my opinion he is still too thin. At his next appt. he will have his first scan.
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Thank you all for sharing
Thank you all for sharing your experiences. At a recent appointment with another institution, I found that they would do neck rads on the left side, as well as low-dose weekly Cisplatin, to "clean up" any microscopic cells that might be left after surgery or in my lymph nodes. This has all been confusing to me, because just about everyone here who has said they had surgery, regardless of obvious lymph node involvement, seems to have had some form of neck dissection.
The journey continues...
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Neck Dissection
When I did my first treatment my doctor did not do anything that did not need to be done. On my second treatment the lump on my neck was the size of a golf ball but doc said he believe he can get it with radiation so again no Neck Dissection. Sometimes I can still see a small little lump there, but doc said not to worry as I am 8 years from my last treatment with no sign of recurring
Hope this helps you some
Tim
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My husband has SCC - stage 4A
My husband has SCC - stage 4A - the cancer is in his tonsils and left lymph node = on august 9th he had the tonsils removed and the tongue and adnoids biopsied. we just learned yesterday that the tongue and adnoids have NO cancer - the cancer started in the right tonsil, spread to left and is also in left lymph node. My husband is going to have chemo and radiation to shrink the lymph node - that should start in about two weeks. The surgeon said it will be a long treatment with the radiaiton. we see the chemo oncologist on the 23rd and then the radiation oncologist on sept 2nd - so I will know more then. In the meantime, my husband has really bad pain in this throat, the day after the surgery he was vomiting, he has coughed up blood clots, etc. I made quite a lot of calls to the surgeon, all normal, they saw him, he is healing....he is doing a little better now, the surgeon said "he should turn the corner on pain in about four more days". Since the surgery he lost four pounds....now weighs 180 -- they also think he will need a feeding tube during the radiation
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starting upmrspaul said:My husband has SCC - stage 4A
My husband has SCC - stage 4A - the cancer is in his tonsils and left lymph node = on august 9th he had the tonsils removed and the tongue and adnoids biopsied. we just learned yesterday that the tongue and adnoids have NO cancer - the cancer started in the right tonsil, spread to left and is also in left lymph node. My husband is going to have chemo and radiation to shrink the lymph node - that should start in about two weeks. The surgeon said it will be a long treatment with the radiaiton. we see the chemo oncologist on the 23rd and then the radiation oncologist on sept 2nd - so I will know more then. In the meantime, my husband has really bad pain in this throat, the day after the surgery he was vomiting, he has coughed up blood clots, etc. I made quite a lot of calls to the surgeon, all normal, they saw him, he is healing....he is doing a little better now, the surgeon said "he should turn the corner on pain in about four more days". Since the surgery he lost four pounds....now weighs 180 -- they also think he will need a feeding tube during the radiation
mrspaul,
He will be finished by Halloween, “trick or treat”. If not then by Thanksgiving “turkey day”.
If he has pain meds then use them. There is no reason to not seek relief, at least for most of us. It is good you are making contact with his team. Don’t worry about bugging them, it is part of the game and you will both get into the rhythm soon.
A PEG is a valuable asset if consuming all your nutrition (3k calories) by mouth becomes prohibitive due to side effects. Many H&N members do manage without a PEG and most will admit they are challenged.
Right now you are learning, but it does get easier when you understand and get in the groove. I don’t mean the treatment gets easier, but the learning gets easier.
Matt
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Thanks, Tim. That does help.Hondo said:Neck Dissection
When I did my first treatment my doctor did not do anything that did not need to be done. On my second treatment the lump on my neck was the size of a golf ball but doc said he believe he can get it with radiation so again no Neck Dissection. Sometimes I can still see a small little lump there, but doc said not to worry as I am 8 years from my last treatment with no sign of recurring
Hope this helps you some
Tim
It helps to know that there are such differences in our treatments. I think I have scared myself a lot by reading different stories without also considering that we all have different tumor locations, margins, stages, health issues, and treatment plans from different places. I kept seeing that just about everybody had neck dissections after surgery, regardless, and that made me worry that my own surgeon had been less than thorough! And I went to Johns Hopkins for my surgery. It is just hard to trust completely when it's your life, I guess. Thank you for sharing your own story. It calmed me a bit.
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No surgery here
My husband had Stage 4A tonsil cancer, 4 lymph nodes involved on left 1 on right. No tonsilectomy no neck dissection. They stated that they found that 90% of the node spreads can be taken care of with the rads and that he had a lot of coratid (sp) involvement and it would be very risky to try. The rads worked and he is 3.3 years out now and doing great. The largest node is now the size of a pencil lead and just scar tissue. U of M told us that if any remained that they would do the surgery and that it would be much easier as the nodes would have been smaller, but the rads did their job and life is good.
Sandy
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Sandy, I'm so happy for yourobswife87 said:No surgery here
My husband had Stage 4A tonsil cancer, 4 lymph nodes involved on left 1 on right. No tonsilectomy no neck dissection. They stated that they found that 90% of the node spreads can be taken care of with the rads and that he had a lot of coratid (sp) involvement and it would be very risky to try. The rads worked and he is 3.3 years out now and doing great. The largest node is now the size of a pencil lead and just scar tissue. U of M told us that if any remained that they would do the surgery and that it would be much easier as the nodes would have been smaller, but the rads did their job and life is good.
Sandy
Sandy, I'm so happy for you guys making it through and being 3.5 years out! It's reassuring to read that your husband was okay in spite of having no neck dissection. This whole thing has been confusing because I got three opinions and two of them involved a doc who sort of sniffed and said something like, "Hm... I'm surprised that a large cancer center like the one that did your surgery did not even discuss the option of a neck dissection." So... You know how the brain can really take off when it hears something like that!
Thanks for sharing your husband's story.0 -
no surgerySylMarie said:Thank you all for sharing
Thank you all for sharing your experiences. At a recent appointment with another institution, I found that they would do neck rads on the left side, as well as low-dose weekly Cisplatin, to "clean up" any microscopic cells that might be left after surgery or in my lymph nodes. This has all been confusing to me, because just about everyone here who has said they had surgery, regardless of obvious lymph node involvement, seems to have had some form of neck dissection.
The journey continues...
Had large nodes in neck but was treated with induction chemo to reduce the size. Then chemo/rads to kill it, no surgery. Doing fine at 3 years post.
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Treatments
I had stage 4 BOT spread to two very big lymphnodes on left and one on the right the primary was 2 cm tumor in BOT . I was wondering about all the different treatments also . I was never offered surgery I had 3 rounds of cisplatin and 35 rounds of chemo .I was told if the treatments didn't work they would look into surgery . Luckily NED it has been 3 years .I'm from Canada it seems to be the choice for treatments here . Best wishes to all .Tammy
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surgerySylMarie said:Thank you all for sharing
Thank you all for sharing your experiences. At a recent appointment with another institution, I found that they would do neck rads on the left side, as well as low-dose weekly Cisplatin, to "clean up" any microscopic cells that might be left after surgery or in my lymph nodes. This has all been confusing to me, because just about everyone here who has said they had surgery, regardless of obvious lymph node involvement, seems to have had some form of neck dissection.
The journey continues...
My husband was diagnosed almost 2 years ago with stage 4 tonsil cancer. He was originally told he had a branchial cleft cyst. He waited almost 2 months to have it removed, and then found out it was metastatic SCC cancer. He then had a tonsillectomy with biopsies down his throat to try and determine the primary site, which turned out to be behind his left tonsil. He was treated with Carboplatin and radiation after that, no neck dissection or further surgery. He is approaching two years cancer free and we are gratefull.
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