Conflicting Information
Hello all. I'm glad to be here. As you can see from my moniker, I am the support person for one facing SCC, which was discovered when calling attention to a swollen lymph node at his long overdue yearly checkup on 5/5. I find myself highly suspicious as he faces the decision as to which treatment to choose because of contradictory statements, misinformation and apparent conflicts of interest. Maybe that isn't the right phrase but the advice given would benefit them monitarily. So, here is the background.
Sent for ultrasound then CT 5/19, both reported suspicion of SCC with the later showing a tumor at the base of tongue 1.6x1.3cm (latest opinion states 16x17x19mm, same side as nodes (2 nodes involved at this point, one 24mm, one 13mm).
Sent to ENT surgeon 5/26 who took a needle biopsy from the node, results negative. He sent him for another ultrasound 6/6 but when he got there they said there'd been a change of plans and did a needle biopsy into the node. This person went in several directions, got a better sample and it was positive for SCC. He then performed a biopsy surgery 6/20, took 6 samples from various locations but completly missed the tumor. All results negative. I can only say he was incompetant because when I watched the screen during the *oscopy done by another, I could see it myself when the Dr made me aware of what I was seeing.
He was referred to the local cancer center 6/26 who did the *osopy mentioned above, recorded for posterity, saw an oncologist that would be in charge of any Rad/Chemo (on the 1 yr anniversary of my son's passing from chondrosarcoma), ordered a PET/CT and referred him to UofM for a consult which led to another biopsy surgery.
The first 4 hour trip 7/3 was pretty much wasted because the disc they gave us didn't even have all the images and no report had been sent. I'd brought all the previous tests though. The only thing we came away with was his opinion it was more than likely HPV+ because of the small size, even though the ENT said it was HPV-.
He did the surgery 7/5, getting a positive sample the first try (he'd said he wouldn't allow my SigOther to wake up until he'd gotten a positive specimine. While his throat hurt for days following the first try, this doctor must have been more gentle because he ate the rest of my sandwich on the ride back home, as well as a 2c. of pudding I planned for him. Dr. told me If HPV- it would be stage 4 but because it was +, he was stage 1. Details are T1N2bM0. He said there is a 90% cure rate and 3 equally curative choices... 1) Rad/Chemo 2) surgery 3) a trial he is running which is surgery to remove the nodes and 30 Rad/Chemo treatments. Options 2 and 3 would be there (30+ 4 hour trips in our 15 year old car), option 1 could be done in our town. Reviewing his report, he wrote in part, "1. Right base of tongue 19mm hyperattenuating mass,, primary malignancy [16x17x19mm (AP by transverse by craniocaudal) and up to 19mm in maximal oblique extent] No osseous invasion, vascular encasement or skull base extension. 2) Mulitiple enlarged II-III patholic/necrotic lymph nodes with indistinct peripheral margins. A smaller cycstic nodule is noted adjacent to the right hyoid, invading the strap muscles." [local Dr said this was some extra cartiledge he was born with. The larger node is up to 24mm, smaller about 13mm.] He added a disclaimer, "Please Note: Our interpretation of studies performed at an outside institution is limited by factors including the absence of technical specifics of the image, undisclosed clinical information and the unavailability of the original interpretation..." We have yet to see any original report on the PET. All they gave us was an incomplete disc and he was later able to get the rest of the images.
Now, appt at our local cancer center yesterday, we were told there is 65-85% cure rate instead of 90, saying he is in the intermediate group, which is 70%, due to previous alcohol and tobacco use. He showed me a study involving 288 cases that used those figures. Not a very large sampling, IMO. We were also told he is stage 4, not 1 because they gage by the fact the genioglossus muscle is involved. I've done enough research to know it should be staged by size and there are schollarly articles out there chastizing doctors who stage by muscle involvement. Although he had nothing but praise for the UofM Dr. (they each praised the other) he said his best bet was Rad/Chemo with them, not surgery or the trial. He even went so far as to say he woudn't qualify for the trial without fudging something. I reminded him the UofM surgeon said all three options were equal and when my SigOther said he must be smart because he's a professor, this doctor, a classmate and peer, said all the drs there have residents under them so they are all teachers. I felt like he was trying to take away some of his status or credibility, as if in competition.
My SigOther said ok, go with Rad/Chemo and we got a call last night from the Rad Oncologist. He wasn't even aware of the HPV+ issue and couldn't answer my concerns over conflicting information, including the "rules" for staging. He assured me by the time of his appointment he'd have an answer, after taking to the other doctor. His appointment for mask is Monday, kidney lab work and to see him is Tuesday.
I've also seen wrong info and wonder if there might be more. Under history on one of the reports, they have him having the swollen node for 3 years. He may have told that first one it had been there for a few weeks, maybe a few months, but absolutely not 3 years. Also, the surgery pathology report from the 1st biopsy surgery that showed negative, said under clinical history, "malignant neoplasm of laranx. The laranx was completely normal and that doctor never said anything about it. Was he trying to justify getting paid.
This is so long and I apologize. But I wanted to give the background so someone might help me understand why the discrpencies and how do we know who to trust? Two opinions that aren't in agreement and none seeming to have the data they need to make the right judgment. Then there's the chance the mighty dollar is causing bias. We only have medicaid but they have funds from other sources too.
Thanks for reading.
Comments
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Get a Third Opinon
Since both opinions have been different, get a third opinion from preferably a head and neck specialist and one who has experience in the field. It sounds like your first doctors didn't.
My husband was diagnosed with SCC of the larynx and the blame was put on the fact that he was a smoker and beer drinker. He had radiation and chemo the first go round and I wish to this day that we had gotten a second and even a third opinion because the radiation and chemo didn't help and maybe surgery first would have been a better option since no nodes were involved. Also we were told up front that head and neck radiation is the worse there is.
As far as rates for survival, remember everyone is different in how they respond to treatment. We thought my husband would be a survivor but he wasn't and his survival rate was good.
Wishing you peace and comfort.
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Thank you Matt. Are youCivilMatt said:welcome
SO,
Welcome to the H&N forum, so sorry that you are here. It does sound like you have a lot of information to sort through. If you get a bad vibe, look for another opinion. It is common for H&N members to have negative and positive biopsies when you are in the initial phase, but they generally settle on positive and your plan is determined.
I was stage IVa, SCC, BOT, 1 lymph node, hpv+ (surgery, rads & erbiux). I selected to have surgery, but not everyone does.
I did not pay attention to the statistics and decided instead to focus on trying to beat the cancer. If you like to sort through statistics, feel free and more power to you. I did not. Generally, the doctor can be pretty accurate just by looking at the health of the cancer and their opinion is based on real life.
You may not hear what you want from another opinion, but you should be able to narrow your focus as you learn more about the cancer and the side effects. Treatment and side effects can be a struggle, but most everyone gets through and recover to a decent new normal.
Matt
Thank you Matt. Are you saying you had both surgery and Rad/Chemo? We already have 2 opinions and that is the problem, because what they are saying is different. Each wants/recommends what they can do and profit from. Yes, a negative biopsy result can happen but one doctor missing it twice, with needle from outside and again during surgery? Also, this is science, still learning, of course, but science just the same. There shouldn't be two ways of grading, each choosing their own preference. There should be standards in place, rules so to speak. Yours sounds nearly the same except with less node involvement and they staged you at IV. The way it was explained to me is that node involvement would automatically make it a stage IV because that is called metastatic, but that isn't the normal stage IV because Head and Neck cancer is a different ball game. A small primary tumor metastasized to the nodes could still be like a stage I cancer, expecially when HPV+, which is why the higher cure rate. At least that is what we were told by one. Thanks again.
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I'm sorryLadylacy said:Get a Third Opinon
Since both opinions have been different, get a third opinion from preferably a head and neck specialist and one who has experience in the field. It sounds like your first doctors didn't.
My husband was diagnosed with SCC of the larynx and the blame was put on the fact that he was a smoker and beer drinker. He had radiation and chemo the first go round and I wish to this day that we had gotten a second and even a third opinion because the radiation and chemo didn't help and maybe surgery first would have been a better option since no nodes were involved. Also we were told up front that head and neck radiation is the worse there is.
As far as rates for survival, remember everyone is different in how they respond to treatment. We thought my husband would be a survivor but he wasn't and his survival rate was good.
Wishing you peace and comfort.
I'm sorry for your loss, Ladylacy. Yes, everyone responds differently, I'm sure. I don't know if Medicaid will allow us to go somewhere else without a referral but I can check. They are moving on this quickly though so we'd have to act fast. Mask creation Monday. And I suspect it is growing because even though he had no pain after surgery Monday, last night his throat started hurting when swallowing and is worse today.
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Lots of information
I can tell you for sure that not being able to get tissue during a biopsy that contains malignant tissue is not that uncommon and lots of factors can contribute to that result. I am sorry you are doubting the quality of care you are getting. All I can tell you is that you may be headed for some rough days ahead and I would want to have confidentce in my husband's treatment team. As our surgeon said, sometimes you only get one shot to slay this beast. As far as the differences in staging goes, our treatment team was right up front that the research and knowledge about HPV and SCC is relatively new, emerging and changing as Phase 3 clinical trials of various types conclude. They told us how it might lead to changes in staging and treatment protocols in the near future. They wanted us to understand that they were telling us their recommendations based on completed, current research and that even though they might have feelings about what the future might bring they would be working from their best judgement based on what was "known" now. They were clear that it is an evolving field of research. Sometimes, I felt that we were caught in an unfortunate research gap but we just had to deal with what information we had. All I can tell you is that we selected the treatment center that was the closest to an NCI center. You are making important decsions that you and only you have to feel confident about in the end. We felt 100% confident, based on current standards of practice, we were in good hands. Yes, we had frustrations during treatment but we are not doctors with experience in this area. We went to a center where our treatment team did head and neck cancer all day, every day. Knowing that helped a lot when we were confused and frustrated and disappointed. All I know is that for us our local doctor staged his cancer as Stage 3 but when we got to the Head and Neck Cancer Center based on her review of the the data she said it was clearly Stage 4 and explained why to us. Based on my husband's information the team did not feel that surgery was a good option for him and explained why. We opted for rad/chemo. I wish you strength and good judgement as you make these important decisions. I am sorry for your difficult beginning of this journey.
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Thank you Soonermom. Aftersoonermom said:Lots of information
I can tell you for sure that not being able to get tissue during a biopsy that contains malignant tissue is not that uncommon and lots of factors can contribute to that result. I am sorry you are doubting the quality of care you are getting. All I can tell you is that you may be headed for some rough days ahead and I would want to have confidentce in my husband's treatment team. As our surgeon said, sometimes you only get one shot to slay this beast. As far as the differences in staging goes, our treatment team was right up front that the research and knowledge about HPV and SCC is relatively new, emerging and changing as Phase 3 clinical trials of various types conclude. They told us how it might lead to changes in staging and treatment protocols in the near future. They wanted us to understand that they were telling us their recommendations based on completed, current research and that even though they might have feelings about what the future might bring they would be working from their best judgement based on what was "known" now. They were clear that it is an evolving field of research. Sometimes, I felt that we were caught in an unfortunate research gap but we just had to deal with what information we had. All I can tell you is that we selected the treatment center that was the closest to an NCI center. You are making important decsions that you and only you have to feel confident about in the end. We felt 100% confident, based on current standards of practice, we were in good hands. Yes, we had frustrations during treatment but we are not doctors with experience in this area. We went to a center where our treatment team did head and neck cancer all day, every day. Knowing that helped a lot when we were confused and frustrated and disappointed. All I know is that for us our local doctor staged his cancer as Stage 3 but when we got to the Head and Neck Cancer Center based on her review of the the data she said it was clearly Stage 4 and explained why to us. Based on my husband's information the team did not feel that surgery was a good option for him and explained why. We opted for rad/chemo. I wish you strength and good judgement as you make these important decisions. I am sorry for your difficult beginning of this journey.
Thank you Soonermom. After reading this and doing some research to educate myself on the terminology and anatomy I think I now understand why our local cancer center team votes against surgery. The radiologist promised to find out some answers and discuss on Tuesday also. It is much higher risk when the tumor goes beyond the tissue in the base of the tonge and extends into the genioglossus. The UofM surgeon used the word, 'deeply' so while it is still a small tumor, all dimensions under 2 cm, I'm sure that would complicate surgery, even using robotics. That muscle is the one that gives support and allows for protruding the tonge. It is important for keeping the airway open during sleep and if not functioning properly, can be dangerous with sleep apnea.
Thanks again.
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Sorry you are having to go
Sorry you are having to go through this. I too am recently diagnosed SCC (HPV still unknown but highly suspect HPV+ due to no history of drinking or smoking).
Recently told I am Stage III (based on the small-ish size of my base of the tongue tumor - 1.6 x 1.7cm - and the fact multiple nodes are invovled).
I learned early on to take charge of your own healthcare because you're the only one that literally has to live by the decisons you make.
My first ENT was a nightmare. He wanted to just go in and do node removal without ever scoping me or even doing a needle biopsy. I told him I was not confident in him and went elsewhere.
My second ENT was fabulous. Scoped me, sent me for CAT scan, visually identified the suspected tumor, highly recommended a needle biopsy, gave me the results the next day and referred me to our local cancer center in Oklahoma City. He even added, "if they can't get you in right away, call me back and I'll do the tumor biopsies and HPV test to get things going while you wait.
The Stephenson Cancer Center has mostly been great. Some earlyon speed bumps with my liason, but they've worked that out with a new one. Beyond that, the 'team' has been great.
They are all of the opinion that surgery should only be considered AFTER all radiation and chemo treatments are done. My surgeon said surgery on the tongue should only be done when the tumor is as small as you can possibly get it. But, she also told me the treatment is a nightmare and not to be taken lightly.
I've talked with people that did surgery first and I talked with people who waited until after all treatment was over. Those talks made me more confident on the treat and see before cutting approach.
Just be confident in whatever you choose. We've had to make a lot of decisions, but my wife and I make them together and fully informed - like changing ENT's, picking a local cancer center as opposed to somewhere out of state like MD Anderson, and even offically refusing a feeding tube.
I've found that most everyone I know thinks they are a Google cancer specialist. Do your own research, ask lots of questions and don't be afraid to insist on clarification and clearer timely communication.
Good luck to you both!0 -
welcome
SO,
Welcome to the H&N forum, so sorry that you are here. It does sound like you have a lot of information to sort through. If you get a bad vibe, look for another opinion. It is common for H&N members to have negative and positive biopsies when you are in the initial phase, but they generally settle on positive and your plan is determined.
I was stage IVa, SCC, BOT, 1 lymph node, hpv+ (surgery, rads & erbiux). I selected to have surgery, but not everyone does.
I did not pay attention to the statistics and decided instead to focus on trying to beat the cancer. If you like to sort through statistics, feel free and more power to you. I did not. Generally, the doctor can be pretty accurate just by looking at the health of the cancer and their opinion is based on real life.
You may not hear what you want from another opinion, but you should be able to narrow your focus as you learn more about the cancer and the side effects. Treatment and side effects can be a struggle, but most everyone gets through and recover to a decent new normal.
Matt
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Definately need to be self educated.
Thanks, OKC. I agree. We need to be our own advocates and educate ourselves so we can do the best job. It's a shame that we can't just believe test results are true and assume doctors are on the same page, scientifically speaking. They call it a practice for good reason, I guess. I'm glad you found a good team. We've learned that good beside manner, a charismatic personality does not a good doctor make. The ENT that completely missed the mark was the coolest guy. I've since had whispers thrown my way about him from other medical professionals so my SO isn't the first he's missed the mark on. Here's hoping yours is HPV+
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I think everyone stuggles
I think everyone stuggles with the surgery decision. My was made easy, in that they said even I had surgery I would still need the full chemo/rad treatment due to my situation. i chose to have treatments at my local cancer center since it appeared chemo/rad treatments were according to a similar/standard protocal. I did not have surgery. Its a brutal treatment, I could not imagine adding on a long drive to the daily treatment. Bottom line, this is an extremely stressful time and you get alot of different opinions on what you should do, but you are doing it right by asking questions and getting as much info as possible. i found a couple local people who had what I had and asked about there experience at the local cancer center which helped me decide to stay local. Good luck, hope this helps. Im 1.5 years out of treatment and feeling pretty good.
Tony
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Thanks
Thanks Tony. Yes, chem/rad is standard. Glad you're feeling pretty good.
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Rough start
Glad you found this site. It has been invaluable to me as a caregiver like you. Our journey was similiar in that my husband couldn't get a confirmed diagnosis at our local ent and hospital. The biopsies all came back negative but the cat scan and pet showed ssc. After a long frustrating start, a trip to U of M and the University of Chicago, we had a confirmed diagonosis: ssc of the piriform sinus with 2 lymph nodes affected. StageIV T1N2bM0. Needless to say, the bottom dropped out of my world. We traveled to UofC for treatment and highly recommend them. Their protocol is similar to UofM, chemo and radiation with surgery used as plan b if needed. No surgery was needed. He is now soon to be 5 years clear, feeling great with minimal side effects remaining.
Hope you get some clear answers soon.
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Small world
It's nice to see someone who is from our neck of the woods with a similar story and positive outcome. Yes, UofM has a great reputation. No doubt we'd go there for surgery but to make 4 hour daily round trips for radiation in our 15 year old car is out of the question. Thahks for sharing, Darcy.
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Confusing
I was diagnosed with T1N2bM0 HPV+ SCC base of tongue in January. There were new staging rules proposed just recently where they created specific guidelines for HPV+ disease. They haven't been adopted officially yet so there are likely some providers that aren't able to speak to them. I was stage IV but under the new guidelines I was Stage I. My team used the NCCN guidelines for treating my disease which basically gave me equivalent outcomes using a combination of 2 out of 3 treatments (surgery, radiation, chemo). Because my primary was small (only like 4mm at it's largest) I chose to have it surgically removed. Then I followed with radiation.
Typically, radiation and chemo are the gold standard. Additional information on the trial would be helpful.
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Muscle involvement with Head and Neck Cancer....
always seems to involve side effects because it takes SO many of them to run the complex nerve groups and functions we do from the neck up. I can tell you my eyes got bigger when the one Dr. offered a clinical trial....like WHAT?? For a first timer, that would be crazy! Getting the chemo/rads would make far more sense...and the tools they use get better every damn month! I have a tumor on the muscle right behind the big cord or tendon (whatever it is) on the side of my neck. I said..."well, lets cut it out!!!".....the ENT said..."wait a minute, the nerve that runs the right side of your diaphram runs through that muscle"....I'll be damned, not such a good idea, huh? Just saying there's a few muscles in our necks we can live without, and some that would make life very challenging.
I'm glad he has you to do good research....the kind that helps, not hinders.
p
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I'm sorry for the delay in response...
I don't see a way to receive notifications of new replies. Johnson, you are exactly right. It appears the local cancer center wasn't up to speed on the proposed changes but the UofM Dr. has already adopted the change. I don't think communication is the best either because the Rad Doctor here didn't even know he was HPV+. I don't see the test results in our portal but I did see it on the oncologist's computer screen 2 floors down from the Rad/Chemo Dr.
P, the trial isn't really any different than what is already being done except it would be a half surgery. They are combining the standard treatments to see if there is a better long term cure rate. They would remove the nodes surgically and give 30 Radiation treatments with Cisplatin for the primary turmor.
Mask is made, bloodwork at the lab, tomorrow is port implant. The 28th is imaging to double check positioning then treatments start the 31st. Thanks for all your support. I'm glad I found my way here.
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Be careful on any of the
Be careful on any of the statistics you come across. We all pretty much head to the browser when we start, and probably all hit the same numbers. But those numbers are very incomplete, possibly don't dIfferentiate between types of H&N cancers, and even if they distinquish on HPV, tend to be cummulative from treatments going all the way back to the 1980s when the HPV+ cancers began to to be more common. The Standard of Care is now much more stable, the diagnostic techniques, when you actually find a competent doc, very well developed. HPV tends to have a tougher than average treatment path with a higher than average survival rate. Also, don't just look at the Oncols, look at their support environment. The infusion center they are associated with is going to be a very big part of your life for 3-4 months. Inquire also about home health nursing. Very good odds he will end up needing supplients of saline drip for hydration, and with tutilage that can be done at home. And don't be shy. This blog site will tend to be very well informed and responsive. Docs tend to live behind 'it depends', former patients and especially their caregivers are much more emphatic.
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Thank you. I've been coming
Thank you. I've been coming to the same conclusion. Many of the studies are pre 21st century and things have changed a lot in the last 20 years. I've been impressed with the support staff at the cancer center. Calls are responded to immediately and everyone meets with a social worker. The first time we met with the oncologist I was impressed with his sensitivity, while still being matter of fact. I was saddened to. When he gave us the facts my SO teared up. I walked over to comfort him while Doc checked through some things on his computer. He told me I was a good woman, he rarely sees what I just did. WHAT? How can there not be compassion for someone going through this, especially someone you live with? Maybe just overwhelmed by how it impacts us caregivers. But he must see hundreds of couples or parent-child teams so I was shocked to hear him say that. Have a peaceful evening.
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The clinic matters
I was diagnosed with stage 4 hnc, hpv + with unknown primary. I presented with one enlarged cervical node and no other symptoms. Former smoker of 25 years, quit 5 years prior. I went to my GP who sent me to a cancer team in my small city. Great doctors and very much encouraged me to get a second opinion before deciding on treatment. They told me I had an unknown primary tumor and based on the large size of my lymph node, they would remove my tonsil for a biopsy and if primary not found there, move to full chemoradiation for 6-7 weeks. Bilateral field so high morbidity. I am 45 and the thought of living with , dry mouth, eventual major dental issues, loss of taste, etc with no gaurantee it would cure me was hard to digest. I read an article that said with cancer, cure rates are correlary with the provider and their size and experience. So I went to Mayo. Dr. Moore writes the literature on HPV HNC and he was no joke. I received a modified neck dissection with ipsilateral tonsillectomy and lingual tonsillectomy with 18 lymph nodes removed. All pathology came back negative.
No radiation. No chemo. Just a stylish 12 inch scar from my ear to my neck. Doctor, possibly the foremost ENT surgeon in the country using the Da Vinci says 92% chance my body beat the primary tumor and I am cured. 3 month follow ups and 6 month scans.
I am 2 months out and still trying to believe I am gonna be ok. Had I not gone to Mayo, I would just be starting the highly damaging process of chemo and radiation And missing work and feeling horrible. This weekend instead, I took my young kids to a water park resort for a 3 day weekend.
MD Anderson in Houston. Sloan Kettering in NY. Mayo in Rochester, MN. Three best in the nation at dealing with HPV+ HNC.
Best of luck to you!
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Cancer Free
I thought I should update to encourage others. The PET scan day after Christmas came back clean so my significant other is considered cancer free at this time. He still has some strange sensation come and go at the base of the tongue where the primary tumor was but I'm sure that is to be expected with radiation. His teeth are very sensitive and the gum issues he had pretreatment won't likely go away but that's a minor issue compared to the cancer. He uses a straw a lot. He lost 25 pounds but has gained a little back. He developed a new favorite food during treatment and continues to eat a lot of it, oatmeal made thin enough to drink. His treatment ended mid September, 7 weeks, and by Thanksgiving he had some of his taste back, enough to enjoy the food. He had to go without on Christmas though, because the PET was the following day.
I've been amazed at how well they cure HPV+ cancer and how well my mate has tolerated the treatments. No it wasn't fun but worth it. May you all do as well.
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