Did anyone not have a neck dissection and just have neck rads instead?

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

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.

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.

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

mrspaul 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

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

SylMarie 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.

SylMarie 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. 

Surgery only to remove salivary gland and tumor, followed by 35 rads. Two different surgeons (One in Memphis, one at Vanderbilt) said they did not recommend any further surgery or dissections.