Treatment after diagnosis

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Treatment after diagnosis

by jkohio on Thu Jul 19, 2018 01:00 PM

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My husband was recently diagnosised with Cancer on the Right Tonsil. He had not shown any signs of being ill, normal checkups, blood work etc. when a lump appeared on his right neck. An ENT performed a needle biospy revealing squamous cell cancer and we were referred to a specialist. Upon out first visit, the dr scoped his nasal cavity and throat and could not see "the primary". So a pet scan was ordered and a surgical biopsy. The pet scan showed a very vague area of activity on the right tonsil only. The dr then biopsied the right tonsil, and in fact they found the culprit. 

So the next steps the dr suggested was removal of right tonsil and left as a precaution and a neck dissection to remove the lymphonode(s) (amount unknown until surgery).

He said at that point he would determine what if any radiation therapy would be needed. 

Has anyone else had surgery before radiation? I am seeing a lot of post in which many seem to not being doing surgery but radiation first... I am very concerned that perhaps we are not taking the right steps.

I would appreciate any input or experiences any of you or your loved ones may have had.

RE: Treatment after diagnosis

by billscampbell on Thu Jul 19, 2018 02:51 PM

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On Jul 19, 2018 1:00 PM jkohio wrote:

My husband was recently diagnosised with Cancer on the Right Tonsil. He had not shown any signs of being ill, normal checkups, blood work etc. when a lump appeared on his right neck. An ENT performed a needle biospy revealing squamous cell cancer and we were referred to a specialist. Upon out first visit, the dr scoped his nasal cavity and throat and could not see "the primary". So a pet scan was ordered and a surgical biopsy. The pet scan showed a very vague area of activity on the right tonsil only. The dr then biopsied the right tonsil, and in fact they found the culprit. 

So the next steps the dr suggested was removal of right tonsil and left as a precaution and a neck dissection to remove the lymphonode(s) (amount unknown until surgery).

He said at that point he would determine what if any radiation therapy would be needed. 

Has anyone else had surgery before radiation? I am seeing a lot of post in which many seem to not being doing surgery but radiation first... I am very concerned that perhaps we are not taking the right steps.

I would appreciate any input or experiences any of you or your loved ones may have had.

I had the tumor removed surgically, and when the doctors found no cancer in the margins or in the lymph nodes, they did not even recommend radiation or chemo.  I'm 5 years out and NED!

Bill

RE: Treatment after diagnosis

by atcbugsy on Thu Jul 19, 2018 02:54 PM

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jkohio,

I'm sorry you and your husband are having to go through this.  Your story sounds similar to how mine presented as well, but mine was at the base of my tongue.  Lucky for me the lump presented and we caught it early.  If it didn't, who knows how bad it would have become.  Sounds like the same is true for your husband.

My PET Scan revealed mine was either at the left base of my tongue, or in my left tonsil.  My ENT did the tonsillectomy and also biopsied my throat/oral cavity.  The tonsils were clear, and the cancer cells were at the left base of my tongue.  The tonsillectomy SUCKED.  For 11 days I sat at the kitchen table with my head in my hands and no matter what I tried to eat or drink, it tasted like burnt dirt.  And the pain was like nothing I'd ever felt before.

We live in North Georgia and our ENT referred us to a local Cancer specialist who recommended radiation and chemo.  No surgery, but a pretty aggressive treatment plan.  After my wife and I got done researching, we decided to get a second opinion and circumstances brought us to MD Anderson in Houston for treatment.  33 Radiation treatments.  No chemo.  No surgery.  I'm almost four years since my last Radiation Treatment and I'm doing great.  There are still reminders, but I have no complaints, especially compared to the alternative.

My suggestion would be to get a second opinion from a place that does nothing but Cancer.  From your screen name it looks like you're from Ohio.  The Cleveland Clinic is one of the top 10 Best Hospitals for Cancer.  

https://health.usnews.com/best-hospitals/rankings/cancer

The folks on this forum are terrific and a great source of knowledge, information, and first-hand experiences.  Post as often as you like with whatever questions/concerns or experiences you may wish to share.

Good luck with whatever you decide.  And remember, we made it through and you and your husband will, too.

Best of luck.

Bugsy

RE: Treatment after diagnosis

by jkohio on Thu Jul 19, 2018 04:52 PM

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Thank you for the input! We are at a top cancer hospital for the journey and I am more than happy with our team so far. Being the information addict I am, I have just noticed that many patients with similar cancers seem to be jumping straight into radiation rather than surgery first. We obviously will do anything we can to get him 100% healthy. I really appreciate you sharing your experience- thank you!

RE: Treatment after diagnosis

by Arman on Thu Jul 19, 2018 05:36 PM

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My situation is almost identical to your husband's.

I was diagnosed with stage III tonsil cancer 4 years ago.

The primary was found in the right tonsil with one lymph node involvement on the same side of the neck. I consulted with two surgeons and two oncologists and they all agreed with no surgery approach since most patients end up with Radiation at minimum for treatment.  The Chemo Dr. Recommended both chemo and radiation, but the Radiation oncologist recommended radiation alone.

I opted for radiation only since both surgeons agreed with only radiation approach for treatment.

Radiation is no cake walk, but it seems to be the common treatment for the majority of the patients on this forum.

I finished treatment Nov 2014 and been cancer free since.

Good luck

Arman

RE: Treatment after diagnosis

by delawaresace on Thu Jul 19, 2018 08:04 PM

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My story. Found a lump on my left side of my neck around FEB 2018. Had it checked out by a doctor who thought it was an infection in my lymph nodes and gave me antibiotics. Didn’t clear up so he then ordered a CT scan. Scan came back as a branchial cysts. Went to see an ENT. He did a needle biopsy that came back as cancer. I scheduled a PET scan that pretty much verified cancer in my left tonsil and of course my lymph nodes. Being a healthy 43 year old male who never smoked, the theory was the cancer was HPV related. I was referred to my local Cancer center for my options. I met with a Cancer team that spelled out what was known and different paths forward. I then did a lot of research on line. I decided on surgery followed possibly by radiation and targeted therapy(cetuximab), no chemo.

My surgery was July 3. I had my left tonsil taken out using TORS and about 25 lymph nodes. The pathology came back with HPV, type16. This is good news because this this type of cancer is easily treated. With this information, my oncologist and I decided on a reduced round of radiation. Starting next week, twice a day for 10 days total (Monday through Friday, off on the weekend, then Monday through Friday again) for a total of 36 Gy (Gy is a measurement of radiation). 

 

I chose surgery first for a couple of reason. I found out that in some cases surgery is all that is needed.

https://jamanetwork.com/journals/jamaotolaryngology/fullarti

https://onlinelibrary.wiley.com/doi/full/10.1002/hed.23930

https://www.redjournal.org/article/S0360-3016(17)32536-1/pdf

And that was my hope until my pathology came back and it indicated that the cancer was more wide spread. Although I could still take my chances with just surgery, I can greatly increase the odds by getting a little radiation.

https://www.itnonline.com/content/halving-radiotherapy-hpv-r

 

I did research on other types of radiation therapy. Both Proton andTomoTherapylooked really good, but I couldn’t find a doctor who would do the reduced radiation schedule. In deciding between 36 Gy ofIntensity-Modulated Radiotherapy (IMRT)vs 72 Gy ofTomoTherapy, I decided on the lesser exposer. I can only hope that it’s the right choice.

RE: Treatment after diagnosis

by Sdurnell on Fri Jul 20, 2018 07:58 AM

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I had surgery first.  My fine-needle aspiration biopsy was not clear as to what type of cancer it was.  So I had surgery, a modified radical neck dissection, because of one enlarged lymph node.  20+ lymph nodes were removed, and pathology showed that it was the only cancerous one, and that it was encapsulated.

I might not have had radiation, but they could never find my primary cancer.  So I had 25 radiation treatments, no chemo.

Treatment is changing when the cancer is found to be HPV related.  (Mine was not, but my doctors feel that it was a false negative.)  These tumors respond better to treatment than the ones caused by tobacco use.  That's why in some cases less treatment is needed.

A tonsillectomy is no picnic, but radiation is usually worse as far as side effects, temporary and permanent, are concerned.  If you have the opportunity to avoid radiation that would definitely be a good thing.

Talk to your doctor about why this plan has been chosen and the likelihood of not needing radiation afterward.One advantage to doing surgery only is that if there is a recurrence then you still have radiation as a backup. 

Make sure you get all the answers you need before deciding on a treatment plan.  A second opinion is often a good idea.  If you choose to have one you'll either be reassured that your original doctor was correct or learn about other options.  Either of those outcomes can help you feel more confident in your plan.

Best of luck to both of you.

Susan

RE: Treatment after diagnosis

by delawaresace on Fri Jul 20, 2018 02:29 PM

Quote | Reply

My story. Found a lump on my left side of my neck around FEB 2018. Had it checked out by a doctor who thought it was an infection in my lymph nodes and gave me antibiotics. Didn’t clear up so he then ordered a CT scan. Scan came back as a branchial cysts. Went to see an ENT. He did a needle biopsy that came back as cancer. I scheduled a PET scan that pretty much verified cancer in my left tonsil and of course my lymph nodes. Being a healthy 43 year old male who never smoked, the theory was the cancer was HPV related. I was referred to my local Cancer center for my options. I met with a Cancer team that spelled out what was known and different paths forward. I then did a lot of research on line. I decided on surgery followed possibly by radiation and targeted therapy(cetuximab), no chemo.

My surgery was July 3. I had my left tonsil taken out using TORS and about 25 lymph nodes. The pathology came back with HPV, type16. This is good news because this this type of cancer is easily treated. With this information, my oncologist and I decided on a reduced round of radiation. Starting next week, twice a day for 10 days total (Monday through Friday, off on the weekend, then Monday through Friday again) for a total of 36 Gy (Gy is a measurement of radiation). 

 I chose surgery first for a couple of reason. I found out that in some cases surgery is all that is needed.

https://jamanetwork.com/journals/jamaotolaryngology/fullarti

https://onlinelibrary.wiley.com/doi/full/10.1002/hed.23930

https://www.redjournal.org/article/S0360-3016(17)32536-1/pdf

And that was my hope until my pathology came back and it indicated that the cancer was more wide spread. Although I could still take my chances with just surgery, I can greatly increase the odds by getting a little radiation.

https://www.itnonline.com/content/halving-radiotherapy-hpv-r

 

I did research on other types of radiation therapy. Both Proton andTomoTherapylooked really good, but I couldn’t find a doctor who would do the reduced radiation schedule. In deciding between 36 Gy ofIntensity-Modulated Radiotherapy (IMRT)vs 72 Gy ofTomoTherapy, I decided on the lesser exposer. I can only hope that it’s the right choice.

RE: Treatment after diagnosis

by JohnnyO on Fri Jul 20, 2018 06:15 PM

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Hi there -

I had surgery first, including removal of both tonsils, a part of the base of my tongue (the primary), and a neck dissection to remove a bunch of lymph nodes (not just the infected ones).

That was followed by radiation, which was supposedly a lower dose than I would have received if I had not had the surgeries first, and that is why I decided to go that route (my second opinion facility suggested only radiation, as that was the conventional treatment at the time).

I'm 6 years out, and but for the occasional tightness in the neck (likely a radiation side effect), it's like I was never sick.

I'm also aware that the newest approach is to do what you're being advised: have the surgery and see whether radiation is even needed.  I know a guy who did that, and he's doing well a couple of years out.  Man, if you can avoid the radiation, avoid it!

RE: Treatment after diagnosis

by slousanders on Mon Aug 20, 2018 04:03 PM

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If his cancer is HPV positive squamous cell, there is an excellent trial at the Mayo Clinic in Minnesota.  Doctors suspect they are overtreating HPVpositive squamous cell because this type of cancer appears to respond better to treatment.  So they have a de-escalation program going on that treats HPV positive squamous cell head and neck cancer for two weeks resulting in less long term side-effects.  

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