Hi everyone,

My name is Jennifer. My 44 year old husband was just diagnosed with oropharyngeal squamous cell carcinoma HPV+. It's been a stressful month with all the biopsies, CT's, and work up to get this diagnosis, but so far he has a positive attitude. He has an appointment on Monday 6/26 with the Head/Neck surgeon, so we will find out then what the care plan is. What we know so far is the primary site is the right tonsil, but as far as staging we haven't gotten that info yet. He has multiple lymph node involvement (which is concerning to me) but his PET is scheduled for 6/27.


It's been 8 months since my husband noticed a large lump on the right side of his neck, which was last October. He went to see his primary physician regarding it and he dismissed it as being a swollen gland because my husband had a respiratory infection at the time. The respiratory infection never seemed to go away, so he went to see an NP who put him on high does of antibiotics for the infection and ordered an ultrasound for the lump on his neck. The ultrasound revealed a mass that is 4.1 x 4.5 x 6.1. After CT they still do not know if it is one mass or two masses that are adjacent to each other.

After an unsuccessful FNA by the radiologist, he was referred to an ENT. The ENT we had was fantastic and thorough with his exam. He did two more biopsies and confirmed that it was indeed HPV+. He referred us to OHSU in Portland, OR which is about 5.5 hours from where we live. He said that my husband would need 2 surgeries: TORS for the tonsil, a neck dissection, radiation, and chemo. I guess our long journey is just beginning. I am trying my hardest to stay positive and upbeat since we have an 8 year old daughter. I know she is scared that her dad has cancer since she lost her grandpa last summer to metastatic liver cancer.

I know I will be coming to this website for advice and to share our journey. While I am still in shock and trying to process the turn that our lives have taken, I have seen many positive postings that give me a positive outlook and grateful for the support that people give each other here. I will post more once we see the surgeon.

Jennifer

Welcome to OCF, Jennifer! You have found the best site to help you and your husband get thru the upcoming rough spots. We will help you with info and support. We have been where you are and understand how difficult it is when first diagnosed. Your head is spinning not knowing which way to turn. You're doing the right thing by coming here. Learning about the disease will help make you a stronger advocate for your husband.

At this time there isnt much that can be done. Your husband should focus on his intake. He should eat all his favorites, desserts too. If he is on the slim side putting on a few pounds would be a good idea. His sense of taste and ability to eat will likely temporarily change so he sure doesnt want to go into this having cravings. During treatment and recovery this needs to be his primary focus. The better he does with meeting his daily minimums of 2500 calories and 48-64 oz of water, the easier time he will have of this. Sounds like you have done some reading already so you probably have seen me nag others about this.

Before any treatments start, your husband should have a full blood panel with thyroid and testosterone levels. If his treatment plan includes radiation then getting these numbers prior to starting rads is very important for later. Its easy to do now, getting the baseline numbers after the fact is impossible.

Best wishes with all the appointments.

Thank you Christine. Your input and knowledge is greatly appreciated. We will be asking the surgeon to order the blood panel for the thyroid and testosterone levels since you recommend it doing it before treatment. I know I will be taking everyone's advice, suggestions, and knowledge to heart since we are in brand new territory here. I just want to be a great caregiver, coach, and positive influence for my husband while he goes through the rough road ahead. It's helped so much to read about everyone's experiences, battles, and victories. Even though I am not the one fighting cancer, I have felt all of your stories deeply.

I will post updates once we know more this coming week. Nice to meet everyone here and thanks for making me feel welcome.

Jennifer (still working on signature)

When you ask the surgeon about the full blood count w/ testosterone and thyroid make sure you first know how many OC patients the surgeon has treated. If its only one every month or so then they may not be aware of the after effects OC patients have down the road. If this doctor is who will be overseeing his care all thru diagnosis, treatment and recovery then they would have a better idea of how important these numbers can be later when problems arise. I want to easy your mind, the after effects arent anything major and taking a pill every day isnt anything to worry about either. Also make sure you tell the doc where this info came from (The Oral Cancer Foundations online message board) and that it isnt from "Dr Google". Many top physicians across the country are familiar with our organization and the credibility we have.

Thank you and best wishes with everything!!!

PS... There are hundreds, maybe thousands who have read your post already. Not everyone always has the time to post a comment, especially over weekends.

Hello Jennifer, I'm sorry that you too have need of this wonderful group. This is quite a scary stage to be at. Diagnosed, but still waiting for staging and then a definitive treatment plan . I found that once treatment started I was able to relax a bit.
Dont expect everything to happen quickly, it won't. I guess he will have the TORS and neck dissection done together? He will need to have his teeth assessed by an Oncology dentist. Any teeth not in great shape will need extraction prior to radiotherapy. Radiotherapy can not start until the tooth sockets have healed which is about 2 weeks. Radiotherapy does not usually start until about 6 weeks post the surgery to give the tissues time to heal. So, you can see why there seems to be a delay.
Radiation is tough, but it is doable. Come here often for advice and support.
I personally, would not have got through our journey without this site and the support and advice of all on here. I hope we are able to help you in the same way.
Tammy

Welcome, Jennifer!

I have a few items to add to the sound advise already given. It's typical that many patients had a delay in diagnosis, and often given antibiotics. The good thing, is it's HPV positive, which is is biggest favorable prognostic factor we have with head and neck cancer, so it's very curable. If there are lymph nodes involved, it's stage 3 or 4, but can be upgraded or down graded after surgery. Multiple lymph nodes are stage 4, with subdivisions a,b,c and both are treated about the same, and staging doesn't mean as much as other factors, and the TNM grading, which is more often used by doctors; Tumor, Nodes, Metastases. Mine was T1N2bM0, which may sound foreign now, but you'll get to know the lingo, and when I started I didn't even know who an oncologist was! For this late stage, usually multimodalaties are used as treatment, as noted.

TORS have proven to be beneficial in both long term survival, and preserving swallowing with lesser need for a feeding tube, dependance, and shorter duration, if needed. That said, down the line, you should meet with a Speech and Swallow Pathologist, SLP, who is part of a multidisciplinary team at a cancer center, and will give instructions on mouth, neck, and swallow exercises to do to help preserve mouth opening, mobility, and swallowing.

I always suggest getting copies of all scans, biopsies, pathology and surgical reports for your records, which often comes in handy, and says more than what you're often told. From the pathology reports, the Tumor Grade,1-3, indicating how aggressive the cancer is is noted, and other histology. HPV related is often poorly differential, Grade 3, which is usually not a good thing, but with HPV it is.

As far as baseline tests, I would also add a hearing and vision test, as chemo can have an effect on both. Vitamin D, B12, and kidney such as the creatinine, and GFR levels, which will be in the CBC anyway, but the others aren't.

There are many other items of concern, which will eventually fall into place after the initial process or come to mind as needed, so you can just ask anything when you want, and I'm sure someone will have knowledge about for assistance.

Good luck

Good morning everyone. Just an update after my hubby's appointment with the Head and Neck Surgical Team at OHSU. As far as staging, they said he is stage IV. He had his PET scan yesterday and we are still waiting on those results. So, if the scan shows no other involvement, their recommendation is to start radiation for 7 weeks, 3 rounds of cisplatin, have a follow up PET three months post treatment, and then surgery if needed at that time. The plan seemed backwards to me, as I thought surgery was always the first step, but the surgeon said that the outcomes are very close to the same whether you start with radiation or surgery. He said that surgery adds the complications of infection (and other things that I don't remember) and delays starting radiation. My husband is going to the dentist this afternoon to get his teeth checked before radiation can start.

Has anyone else started with radiation instead of surgery? Any thoughts?

Thanks everyone!

Jennifer

The literature indicates the order has no effect on efficacy. My speculation is that shrinking the tumor could make surgery easier. HPV+ tumors are especially sensitive to radiation so I anticipate it will decrease in size dramatically.

Brian and Christine may have more to share on this; I had surgery first as we were trying to find my primary; I only found out via lymph node like so many of us.

Wishing you both the best.
Stef

Jennifer, Im sorry but off the top of my head I cant think of any patients who have had surgery after rads for tonsil HPV+ cancer. Maybe its due to it being HPV+??? I really cant even guess as to why over the years Ive seen all the patients here (regardless of stage) have surgery prior to rads as rads may not be necessary. I suggest finding a comprehensive cancer center (CCC) and going for at the very least a second opinion. By doing surgery later the patient will have problems with recovering in the area that had radiation. Dont rush into a plan too quickly, you need to get the right plan so this cancer is eliminated once and for good.

Check out the NCI and the NCCN website about their treatment options info. You may have to join the sites but its great learning all the info so you can better understand how things should go.

NCCN head and neck cancer treatment

NCI treatment for head and neck cancer

I want to reinforce what Christine said about going to a comprehensive cancer center. You will have access not only to medical and radiation oncologists but surgeons, nutritionists, and swallowing/speech pathologists.

Those folks work ONLY on head and neck cancers; it makes all the difference in the world.

Thank you for the replies, it is very much appreciated. We went to OHSU Knight Cancer Institute which is a comprehensive cancer center in Portland, Oregon. Our physician is the assistant professor of Head and Neck Oncologic surgery at OHSU and is the Director of Head & Neck Clinical Trials there as well. He said that OHSU just completed a trial that said the outcomes of surgery vs. radiation as the primary treatment were almost identical. But for our own peace of mind, I have contacted the Otolaryngologist who first diagnosed my husband to get his opinion as well. Dr. Funk was the head of Otolaryngology at the University of Iowa Hospital and specialized in oncologic head and neck cancer before he moved to Oregon to semi-retire. I value his professional opinion very much.

Christine and Stef, your advice of not rushing into a plan has made me feel so much better. I only want what will be the best outcome for my husband, so I will be making plans for a second opinion. He did receive good news from the dentist today- all of his teeth are great except for a bottom molar that will need to be removed because it could cause trouble down the road. They took impressions to fit him with fluoride trays so he can get fluoride treatments everyday after radiation.

Thanks again everyone. I feel so much better conversing with people who have a great knowledge of this and offer great advice. I will keep you posted!

Jennifer

Regarding surgery post radiation question - is it possible that the surgery the oncologist was referring to was a neck dissection for lymph node involvement?

My understanding is that with HPV+ tumors that decision can be made after radiation/chemo. Often the lymph nodes respond completely to tx and that surgery will not necessary.

My treatment for tonsil cancer, and two lymph nodes, in 2009 was adjunct chemo, followed by Chemoradiation for preservation of swallowing and function, which was popular at the time instead of the morbid split lip surgery. If there was residual cancer or it recurred then they would do "salvage surgery" or "surgery as a last resort" as it's called to the primary or lymph nodes where there was radiation.

Over the years, I've heard of both, upfront surgery before treatment, which I believe MSKCC was doing before undergoing Chemoradiation in 2009, and mine at Mt Sinai, both top CCC, were doing Adjunct and Chemoradiation, and surgery as a last resort, and other variations.

Mt Sinai were also one if the first to do TORS, which I inquired about, but was told it I couldn't do it due to the number of cancer areas involved. I think at the time, TORS was just for tonsil or BOT primary with no neck dissections, and may have since changed. At a later time, another possible recurrence, I was told I couldn't have TORS because of my limited mouth opening from radiation

Subsequently, I needed salvage surgery to my neck for a recurrence. As far as the neck dissection, it was supposed to be a modified radical neck dissection, but during surgery, everything was all twisted up from radiation, so I had a radical neck dissection, which removes the lymph nodes level ll-V and the vein, nerve and neck muscle.

There are positive and negatives with both, one negative being radiation does make structure changes as mentioned, so surgeries can be a little more difficult, and with TORS, Microscopic Laser Surgery, and Endoscopic surgery, the idea of surgery being upfront seems popular again too, and heard of other variations with no chemo, lesser radiation, etc. depending on other negative or positive features. .
.

Jennifer, travellottie brought up an excellent point. The surgery after rads can sometimes not be for the tumor but a neck dissection to remove lymph nodes. I suggest you confirm the surgery specifics with the physicians who are treating your husband. It could be exactly what travelottie suggested.

Here is a list of the countrys top 69 cancer centers (out of 1500) . On the left column you will find the type of cancer center either basic, clinical or comprehensive. This tool may be helpful to you in seeking out another opinion. Since OCF has members from all over the world, finding someone who is near your local area to pass along doctor info may not happen right away when you need it. Plus, what one patient thinks is ok another may not and its that particular patients opinion, not scientifically ranked. OCF doesnt rate doctors or hospitals (other websites are dedicated to this) but we do go by the NCI list of the top facilities in the US. There are also organizations out there that help cancer patients with free or low cost air travel and special lodging for cancer patients who must travel for treatments or other opinions. Ive put both links below in case you (or anyone reading this) needed further info about these things.
Best wishes!!!

NCI top 69 US cancer centers

Main OCF Website... Financial Assistance including Air travel/Lodging

Travelottie and PaulB,

Thank you for your input and for sharing your knowledge. I did call and ask about why the surgery, if needed, would be done after treatment and they told me exactly what you guys did. It would be a neck dissection since the nodes in level ll, lll, and lV are involved. There was so much information given to us in our consultation that we are still processing most of it.


ChristineB,

Thank you for the list of cancer center and the OCF website link. It will be very helpful! I was very happy to see that our cancer center was in the top 69!

Thanks again everyone for your input...I am learning so much from all of you and am grateful to have people that I can ask questions and get advice!

Jennifer

Sounds like it could be a "planned neck dissection," which is done after treatment no matter what the outcome is with Chemoradiation being three nodal levels are involved vs watch and wait approach.

Good luck

Jennifer,
It is so much information; you may want to use your cell phone and record audio from office visits. I do that when my partner can't join me as sometimes it is too much detail.

Your husband is so lucky to have your support and care! Wishing you both the best through this journey.

Stef

Always ask the doctor before recording anything. Some physicians are not willing to have their sessions recorded. Others are only too happy to accommodate the request. Its a great way to be able to go back to review everything you might have missed.