Options when there’s no Primary?
Ever since what was thought to be a benign branchial cyst removal ended up as P16+ SCC lymph node (one) the docs have been searching for a Primary cause of this cancer. My husband has has PET scan, MRI & NAVDX - all come up clean, no “light-ups”, 0% disease. TORS procedure also identified no definitive primary even with “frozen section” testing in the TORS OR. Some biopsies were sent to the lab so, we do continue to wait for those results although I’m bracing myself for continued unknown primary status.
We have been told by the radiologist that with an unknown primary, the protocol is to radiate bilaterally which - given the long-term effects - seems so unfair and unfortunate given what appears to be a fairly healthy body, free from identifiable cancer! VMAT is the rx available as Proton is prohibitively far from where we live. The radiologist indicated that the VMAT was the rx of choice and was dubious about the research around Proton.
Anyway, my question for the board is about options. What are they? I’d like to research so I know what questions to bring to the doctor. We are fortunate to have care through Stanford Cancer Center and I’d like to think that they’d know better than most however protocols will guide their recommendations and it’s hard to accept limited options.
Any experience and guidance is welcome. I have looked at the super thread and though I’ve seen a lot of very helpful information, not quite found information on options/alternatives for this head and neck radiology rx when the primary cannot be found. I guess it’s not uncommon.
Thanks for your response - Nova55
Comments
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Hello, Nova55, and welcome to the CSN H&N discussion forum.
Sorry, you are in the club nobody wanted to join.
It sure looks like you have done your research.
From what I can tell by a little searching a Brachial Cyst is a growth usually benign and appear as a growth or anomaly on the skin and can have a lump or enlarged area underneath.
So, if I have this correct, they took the cyst out, but it was cancerous and caused a lymph node to be cancerous. So have they also removed the cancerous lymph node?
If I am not correct on this, please correct me.
As far as no primary check this out, from the American Cancer Society, it should explain a lot…
What Is a Cancer of Unknown Primary?So, your husband had surgery for the cancer, and it is standard procedure to use follow-up radiation and chemo to eradicate leftover cancer cells on the cellular level. Even if the surgeon many times feels he has gotten clear margins many times, they do follow up with radiation to get any cancer that was missed. This mop-up operation is to eliminate all the cancer. Between surgery and the radiation and possible chemo, it is a one-shot deal to get rid of the cancer, and believe me, that is what you want, once and done. You don't want to revisit this.
It seems to me that since surgery was involved, he may not get real heavy radiation.
Below, I will post something I typed up a while back. Please look it over and see if it helps in any way. Some will not apply to you. The posting is below the Picture.
Also, Prayer is a good tool to use.
Our motto here is NEGU (Never Ever Give Up)
Wishing You The Best
Take Care, God Bless
Russ
H&N Cancer Sequence of Treatment
So You Think you Have Cancer?
So You Think you Have Cancer or Have Something Suspect Going On in the Head and Neck Area.
Important:
- Many have feared that the soreness or unusual feeling in their Head & neck Area is cancer and assumed they are going to die. Even if the unusual feeling area is cancer, with modern cancer treatment this is very unlikely and successful treatment is getting better every year.
- The best way to approach this is with an open mind and calmness and seek the help of a medical professional like an ENT for instance.
- Many people have worried themselves sick only to find they have no cancer, their problem was caused by something else
- It’s not cancer till they say it’s cancer verified with scans and a biopsy.
- This is a step by step process to check, identify, and treat cancer.
- Whatever your problem is your medical team will get you through this.
- Many people are upset, worried, and fearful but the best examples of the way to handle this has shown to be stay calm and contact a medical professional such as you family doctor or an ENT and get in and get evaluated as soon as possible.
- Cancer is no longer the death sentence it once was but this idea persists.
- Also please remember if you have to enter into a cancer treatment regimen it is not a quick process and in fact usually spans over a number of weeks. But be patient and do your treatments because your medical team has put together a treatment regimen tailored to your cancer and type and location. With advanced treatments we have today the possibility of success of the eradication of a persons cancer has a very good success rate.
So Next Step Is To:
- See your family doctor, he may try a round or two of antibiotics or send you to an ENT. (Ear, Nose, and Throat Doctor)
- Go directly to an ENT is also and option. ENT’s are all things Head and Neck.
- This is very important! Anytime you go to any meetings during this situation of a possible problem and possible cancer with your Doctor, ENT, Radiation Doctor, Chemo Doctor, Etc. always take a notebook or note pad and if possible absolutely take along another person. Two sets of ears are better than one and you may be given a lot of information. A lot can be thrown at you, new terms you never heard before and just too much info to process in your meeting so have a friend along. Also ask if you can audio or video record your meeting with any doctor you see so you can play it back for anything you missed.
- If the ENT doctor sees or feels something suspicious or unusual.
- They may take a biopsy if something is suspicious, visible, on or near the surface.
- They will send you for a CT Scan with Contrast.
- If cancer or suspected cancer is seen on the CT scan a biopsy will be ordered.
- If the biopsy confirms cancer your ENT will order a PET scan. Basically a whole body scan with a small amount of radioactive dye to see if cancer is anywhere else in the body.
- Cancer must be verified and identified with a biopsy so they know for sure it is cancer and the type of cancer so they know how to treat it.
- If cancer is not seen anywhere else except where first suspected that is the best news.
- It means they are treating cancer in only one area.
Your ENT or Cancer Team Guides the Process of your Treatment
If you are going through an ENT they may guide the process of your treatment. When I had treatment done my ENT initially found my cancer. He is the one who later took the biopsy. And it was through his office that appointments were made for CT and PET scans. Through his office I was set up with appointments to meet with chemotherapy and radiation doctors. In my case my ENT was my front line guy and through his office everything was coordinated and looked after. And when my treatments were all done I continued to see him for follow up appointments to keep watch for problems or recurrences. I was taken excellent care of the whole time. I had a cancer team coordinated by my ENT.
You May Have Hospital or Cancer Center A Cancer Team
Instead of an ENT you may have been referred to a hospital or cancer center to handle your case. So in this case everything may be at this one facility to handle all your needs during your treatment. This would include the same thing, Radiation and Chemotherapy doctors, PET & CT Scans, an ENT to check you and do scopes to watch over you and anything else your case requires including a Tumor Board to review your case for treatment.
No matter how your case is dealt with there should be someone coordinating all the various doctors, scans, tests, and treatments and follow-ups.
INTEGRATED APPROACH TO MANAGEMENT
A multidisciplinary approach is required for optimal decision making, treatment planning, and post-treatment response assessment. This should include surgeons, medical oncologists, and radiation oncologists, chemotherapy oncologists as well as dentists, speech/swallowing pathologists, dietitians, psycho social oncology, prosthodontist , and rehabilitation therapists. Specifically, a multidisciplinary tumor board affects diagnostic and treatment decisions in a significant number of patients with newly diagnosed head and neck tumors for the best outcome.
What’s Next?
The next phase now is for your cancer team to look at your scans, biopsy, physical condition, blood tests possibly and work up a treatment plan for you using all the information on you they have.
Your case may be brought before a tumor board of doctors to discuss your case and share opinions so you get the best possible treatment and the least side effects.
Your treatment could include surgery, chemotherapy, radiation of some variety or all the above is possible in some cases.
Dental Care
Get a full dental exam and any teeth that need repaired should be and any that need extracted should be. You want to go into H&N cancer treatment with your dental condition in perfect condition.
Gain Weight
Gain weight unless you already carry extra weight. Eat everything you like and lots of it.
This is one time you can let go and not worry about calories-enjoy.
Consult with your doctor about your weight.
Feeding Tube?--Port?
Depending on your cancer situation and the treatment plan that is worked up for you your doctors may want you to--
- Get a feeding tube put in. (Gives your nourishment when you can’t eat-they are a lifesaver)
- Get a Port put in. (Ports are true vein savers)
I highly recommend if your doctors tell you to get either of these or both of them before you start treatment don’t hesitate to get them you will be glad later you did. The doctors have experience with past cases and the treatments you are going to get and they know how it affects the human body-trust them.
Mask?
If radiation is going to be part of your treatment you will be getting a mask made that is custom made to your head and face.
What is a radiation mask for?
Nothing to fear here, they take a nylon mesh from warm water and stretch it over your head and it conforms to the shape of your head and face. This mask fastens to the table as it will during all your radiation treatments so your head is held still and in one place and insures your head is in exactly the same place every time providing extreme accuracy in the delivery of radiation every treatment. After about 20 minutes they will unfasten your mask and when it dries and sets up will retain the form of your head and securely and gently hold your head in place for treatment each time. This ensures treatment is delivered exactly every single time to the cancer area.
Treatment for Head and Neck Cancer
Cancer of the head and neck is an umbrella term used to describe a variety of malignant tumors that occur in the mouth, lips, throat, nose, sinuses, larynx, and salivary glands. Together, head and neck cancers account for about 4% of all cancers in the United States.
A diagnosis of head and neck cancer can be overwhelming. Fortunately, effective treatments are available, including surgery, radiation therapy, chemotherapy, targeted drugs, and immunotherapy.
How is head and neck cancer treated?
From my experience and observations these days many doctors, hospitals, or cancer centers try to treat Head and Neck cancer with Chemotherapy and Radiation if possible. The reason for this is it is less debilitating and disfiguring and is usually very effective. I have had this type of treatment for throat cancer. It seems the general rule of thumb as per this treatment regimen is 35 radiation treatments with chemotherapy in the beginning, middle, and at the end of the radiation treatments. Also at times depending on the patients particular situation such as tumor size or location they may receive chemotherapy before this general treatment starts such as extra chemotherapy or possibly in hospital chemo for 5 days at a time.
Each persons case is different and your doctor will consider all 3 options or more and most likely your case will go before a tumor board of doctors for discussion and conclusion coming up with the best treatment plan for you.
Several types of treatment are available for head and neck cancers. The choice of treatment varies based on the location of the cancer, whether it is localized or has spread to other parts of the body, and other factors.
Surgery. Surgical removal of the tumor is often used to treat head and neck cancers. It may be used alone or in combination with radiation therapy and chemotherapy. In some cases, nearby lymph nodes are removed as part of treatment.
Radiation therapy. This therapy, commonly used to treat head and neck cancers, kills cancer cells by exposing them to radiation. It may be used alone or in combination with surgery. It may also be used before or after surgery to shrink the tumor or destroy any remaining cancer cells, respectively. For advanced-stage cancer, radiation therapy is frequently used in combination with surgery and/or chemotherapy.
Chemotherapy. Chemotherapy uses drugs to destroy or damage cancer cells. For head and neck cancers, it is usually used in combination with surgery, radiation therapy, or both. It may be given before or after surgery. For advanced-stage cancer, it may be used in combination radiation therapy (known as chemoradiation).
Targeted therapy. Drugs designed to target epidermal growth factor receptor (EGFR), a protein found on the surface of cells that helps them grow, may be used to treat some head and neck cancers.
Immunotherapy. These drugs stimulate the patient’s immune system to help it better fight cancer.
Reconstructive surgery to restore function of structures damaged by disease or treatment may be necessary. In some cases, patients will need to undergo rehabilitation therapy for speech and swallowing.
Surgery
Surgery itself for cancer treatment of the Head and Neck area is pretty self explanatory. It is basically one of the choices of treatment and can be used when it is the best treatment for the cancer you have and the area you have it in. Many times a tumor or cancer area can be removed without affecting function and surrounding areas such as removing a small spot on the tongue for example or a cancer growth somewhere else in the H&N area. Sometimes it is a more involved surgery such as a tumor in the throat area, removal of the thyroid gland, or a radical neck dissection to remove cancerous and suspect lymph nodes. Each individual case is different and the doctors may have a tumor board of doctors to present your case to to come up with the best treatment options and decide the best approach which may be surgery. Your side effects and long term effects from surgery will depend on your specific case. Below is a link to a web site “Perlmutter Cancer Center” offering examples of the types of surgery that may be performed.
Side Effects During Treatment With Radiation
What are the side effects of radiation therapy?
Radiation therapy can damage normal, healthy cells near and around your cancer. The damage may cause side effects. These side effects can be very different for different people. Your side effects may depend on:
- The dose and type of radiation used
- The site of your head and neck cancer
- The stage of your head and neck cancer
- Your age
Types of side effects
Side effects can appear around 2 weeks after the first radiation treatment or much later and can include:
- Mouth sores (ulcers in your mouth)
- Dry mouth
- Pain or difficulty swallowing
- Changes in taste or smell
- Changes in the sound of your voice
- Jaw stiffness and other problems with your jaw bone
- Changes in your skin
- Feeling tired
Side Effects During Treatment With Chemotherapy
Side effects of chemotherapy
Chemotherapy can affect the healthy cells in the body and cause side effects. Everyone reacts differently to chemotherapy, and effects will vary according to the drugs you are given. Some people may have few side effects, while others have many.
Your medical oncologist or nurse will discuss the likely side effects with you, including how these can be prevented or controlled with medicine.
Common side effects include:
- tiredness and fatigue
- nausea and/or vomiting
- tingling or numbness in fingers and/or toes (peripheral neuropathy)
- changes in appetite and loss of taste
- diarrhea or constipation
- hair loss
- low red blood cell count (anemia)
- hearing loss
- ringing in the ears (tinnitus)
- lower levels of white blood cells, which may increase the risk of infection
- mouth sores.
Keep a record of the names and doses of your chemotherapy drugs handy. This will save time if you become ill and need to go to the hospital emergency department.
Targeted therapy
Targeted therapy targets specific features of cancer cells to stop the cancer growing and spreading. Each targeted therapy drug works on a particular feature, and the drug will only be given if the cancer cells have that feature. For some head and neck cancers, a targeted therapy drug called cetuximab is occasionally used when people cannot take the standard chemotherapy drug or the cancer is advanced.
What are the possible side effects of targeted therapy?
Targeted therapy drugs have different side effects than standard or traditional chemotherapy.
...
Other side effects
- Nausea and vomiting.
- Diarrhea or constipation.
- Mouth sores.
- Shortness of breath or trouble breathing.
- Cough.
- Feeling tired all the time (fatigue)
- Headache.
- Hair loss.
Immunotherapy
Immunotherapy uses the body’s own immune system to fight cancer. The main type of immunotherapy in Australia uses drugs known as checkpoint inhibitors, which help the immune system to recognize and attack cancer cells. Nivolumab is a checkpoint inhibitor used to treat some types of advanced head and neck cancer.
Side Effects of Immunotherapy Head and Neck Cancer
These side effects are common but may not occur in all people or with all types of immunotherapies.
- Feeling tired (fatigue)
- Diarrhea.
- Fever.
- Shortness of breath.
- Rash and/or blisters, covering less than 10% of the body.
- Nausea.
- Vomiting.
- Itching.
Below is one persons story of typical Head and Neck Cancer Treatment involving radiation and chemotherapy.
It gives you an idea of what people face that go through this.
What you or a loved one may encounter.
Your results may vary, for example some people get diarrhea and or constipation and some don’t.
Some get sores inside their mouth from the chemotherapy called mucositis other not so much.
Consult your care team to deal with any side effects you encounter
One Persons Story of Head & Neck Cancer Treatment
Hello Again
I had 7 weeks of radiation, and three infusions of high-dose cisplatin. (The chemo requires an overnight hospital stay - except for the last dose, which they fractionated because they were worried about permanent hearing damage).
On that, yes, I'm still getting tinnitus. It's intermittent and was much worse directly after the chemo - but it's still there. I don't know if it will go away fully or not, but I hope so. (If not, a small price to pay to fight the cancer).
I never lost my voice, but when the mucositis was at its worst, talking was sometimes difficult - just because of the thick mucous accumulating in my mouth and the need to spit .. so I would sometimes sound like a cartoon supervillain or someone with some kind of speech impediment as I talk/gargled through a thick layer of yuck.
(And yeah, I used flat mineral water and every other thing the internet suggests, including a concoction of magic mouthwash - which has viscous lidocaine (for numbing), sucralfate (for a barrier), antihistamine (to reduce phlegm), and other bits and bobs all mixed up by a compound chemist. You could google it for a try, as it was OK ... from my research the best mucositis treatments are new patent medicines available in the USA, and I think maybe just now starting to distribute into Australia .. google medicines like "Gelclair", which advertise symptomatic (and prophylactic) relief of mucositis. I couldn't get my hands on any in time to help me.
I stopped eating around weeks 4-5 of treatment, mostly because of the rancid taste dysgeusia. Everything in my mouth tasted contaminated. (A side effect of the chemo).
It's gone now, and I am able to take everything I need by mouth - but no solids .. just hydration and the formula that I'd otherwise put into the PEG I can drink by mouth now (so I'll look at getting the PEG removed in the next couple of weeks).
Yes, I still have a sometimes sore throat. Basically, the radiation damage you suffer over the course of treatment is .. well it's just a horrible insult to your body. It's worse than a normal wound or injury because the treatment actively attacks the stem cells (which normally help you heal), so the wounds can be severe and slow to heal. But my pain is very manageable now .. just 2 panadol today. It was at its worst the first 2 weeks after treatment.
When you finish the course of radiation - yes, the interior and external radiation damage can be a problem (who knows, you might get lucky, don't expect the worst). It's great to no longer have to go to the hospital every day - just be ready for the possibility that you might be debilitated at that point, and be prepared that you might need 2 solid weeks of pretty much bed rest and just ticking away time before you start to heal and feel better.
For me, it went something like this, over the span of treatment:
Week 1: First round chemo & 5 rads (felt fine, some nausea from chemo)
Week 2: (5 rads) minor tinnitus onset from chemo, some vomiting, radiation fine
Week 3: (5 rads) tinnitus fading, feeling quite good, no issue with rads some reduction in taste
Week 4: (5 rads, chemo) start to notice mucous problems, no burns yet, more serious nausea and vomiting from chemo
Week 5: 5 rads) noticeable exterior burns and sore, stretched skin, mucositis more severe, notice rancid taste to everything in mouth - can no longer eat or drink, become PEG reliant
Week 6: (5 rads) mucositis worsening, always have to carry spit bag, burns need intrasite gel and daily dressing, relying on panadol / neurofin but pain increasing
Week 7: (5 rads + chemo) mucositis debilitating, need to gag up mucous constantly, accidentally swallowing any precipitates a need to vomit, exterior neck burns are moderate and need dressings and intrasite gel, doctor escalates pain management to endone / morphine
Week 8: (first-week post-treatment) awful awful suffering, vomiting, spitting up blood, constipation, bloating, night cramps in legs, mucositis severe, pain moderate to severe, wounds still require intrasite and dressing for a few days
Week 9: (second-week post-treatment): exterior burns healing nicely, no longer require dressings, just moo goo (healing moisturizing cream). Pain lessening, but mucositis still awful, night cramps in legs
Week 10: (third-week post): exterior burns gone, pain better, mucositis still bad, but feels a little bit better, able to sleep for more than an hour or two at a time thanks to improving mucous, night cramps gone after taking daily vitamin & zinc
Week 11: (fourth-week post): turned a corner with mucositis, now still have to spit during day and night, but it's a fraction of what it was. Experimenting with foods but can't viably swallow them due to gross mucous - but start tentatively to sip drinks .. still mostly PEG reliant
Week 12: (fifth post): mucositis backing off more, can now take most nutrition and hydration via the mouth and thinking of getting rid of PEG. Pain is manageable, don't require anything more than panadol. Can't yet eat solid foods, although taste appears to have returned to at least 50% of pre-cancer levels
So ... that should give a pretty fair idea of how things have been for me .. you might get better (or worse) luck with side effects, but hopefully, it gives a little perspective. Knowing what to expect has been really tough, and it's easy to get into this habit of scouring Doctor Google almost daily. I think in the post-treatment phase the most important thing is to take it easy and not expect too much from yourself. Your body has been subjected to a major attack, give yourself time to rest and heal, and if you need help make sure you ask for it.
Oh yeah .. and on kids .. no, they have no idea, just "dad's been a little sick"
Link below to this online forum posting of people discussing treatment side effects.
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