I’m not sure if this is related to my treatment from 2005, but I am having sudden and lasting symptoms pointing to a diagnosis of Paraganglioma(s), I suspect in my thoracic cavity, near my spine (T3-T5) and I don’t know what to do or where to turn.

Has anyone else experienced symptoms with some commonalities of mine here:?


ANECDOTAL NOTATIONS CONCERNING COMPLAINTS:
Stabbing Back Pain, 2-5 spinal area, approx between T1-T3
Overall feeling of dread, gloom and doom, weepy
Overwhelming sensation of end-of-life, worry & fear driving decisions
Stomach upset, pressure, bloating, gas, diarrhea
Sharp, mild pain under Left breast on side, near serratus anterior, comes and goes, seems to be improving recently (feels like muscle tear, 2-4 on pain scale)
Perception/Awareness of strong pulse, especially in abdomen at times
Heartburn / Acid Reflux - increasing for 2 + months normally managed easily with meds
Any Sudden Noise (ie: a phone ringing unexpectedly, a car honking, or just a sudden doom/gloom thought even, gives a “jolt” - hyper sensitive to stimuli (rush of endorphins, adrenolyn maybe)
Globus sensation in throat, especially on swallowing, new physiological changes in throat area perceived
Occasional sense of “too much caffeine”/ being “hypoglycemic” w/out corresponding cause.
Excessive uncharacteristic heavy sweating on exertion noted for 3-5, years & noted night sweats the last 2-4 weeks.
Easier to provoke or agitate for 2-4 months, annoyed by things that in the past wouldn’t have annoyed
Urine output DARK RUST ORANGE color for 3+ years, especially on waking, despite being well hydrated
When first waking up most mornings, fast pulsing sensation in skull - pressure feeling (similar to a panic attack)
Chest pressure / some pain / sometimes improves with cold or heat
PVCs on EKG, feeling like a panic attack, unsettling
PVCs / possible SVTs seem related to food intake / gas / bloating / indigestion
Feeling in abdomen similar to strong hunger ping, but different and not related to hunger
Pressure in chest, side of left breast and nipple area
Back pain center of back 2-4 weeks
Gas, bloating increased 3 weeks ago - some slight improvement
Extremely Foul stools (with sulfur smell) and gas for 2 weeks one month ago, now improving
Possible vision changes - some blurriness
Blood pressure has been increasing steadily for 6-8 months (as observed) doubled atenolol to 50 each evening before bed, no noted effect
Spikes of BP, especially around 7-9:pm progressively, spiked at 235/138, seems related to or cause/effect with PVCs noted on EKG
Pressure / bloating in upper stomach
Spinal neck pain when standing or looking downward (like reading a book etc)
Feeling of being both hot & cold at the same time
Feeling "jittery" often, "on edge"
Stomach is larger recently, bloated and full; increased in size
Perceived cognitive decline 3-5 months — difficulty with recall.
Noticed for 1-2 years more irritability and over reaction to stressful situations
Urgency to urinate — 2 years — but especially relieving (overwhelming sensation of relief) for 2 weeks urine output very dark, rust colored for 2 years - especially first urine
Swollen nodes in left armpit and groin noted recently

Hello,welcome to our group.

Hi All, just joined the forum. My husband had a partial glossectomy on April 13th with multiple problems - two episodes of significant post-surgery bleeding and brain swelling. Tumor was T2N0M0, moderately differentiated, tumor depth of 8 mm. He has now recovered and eating well. Since surgery we've received three different medical opinions as to follow-up treatment and don't know what do to. 1) Elective lymph node dissection of Levels I to III on side of neck where tumor existed, biopsy the nodes for microscopic cancer, followed by radiation to tongue; radiation to neck would be considered if any cancer found in the nodes 2) do nothing further, take a wait and see approach 3) no lymph node dissection but radiate the tongue and both sides of the neck.

The tumor surgeon went after close margins - only 2 mm, but margins were clean, no neural invasion. However, 3rd opinion doctor said she should have went after 5 mm margins. Does anyone have advice? We have an appointment with his internist in two weeks to discuss the three opinions. He is 56 with significant heart problems - two years ago had aortic valve replaced, single coronary bypass, an ablation and correction of an aortic root aneurysm. He also has COPD. I think two of the doctors are concerned about complications from the dissection given he had problems with the glossectomy.

I've read everything I can on here about diagnosis and treatment. Just at a loss at this point.

Thanks.

My husband is a 12 year cancer survivor. He went through oral cancer treatments in 2007 and had stage 4 SCC. I'm kind of an over-planner and knew going into this relationship that osteoradionecrosis was a possibility and that eventually it could mean total jaw replacement. We're not there yet. We're in this awful stage for the last several years of tooth decay/loss. Initially, we went for a denture consult, and that doctor wouldn't touch him. Husband said this is typical, doctors don't want to mess with cancer patients because of the risk, he did give us several oral surgeons to investigate, and none of them really panned out.

A couple years ago we went for a consultation at Orlando Health. The doctor there basically said there was nothing she could do that was covered by our insurance and that dentures were his only option. Even the thought of having to get dentures makes his anxiety go through the roof, he wants to believe implants are possible, but ORN has already started affecting his jaw. Later that same year he received a referral to Shands of UF, and the doctors there were wonderful, they said they could help and we just needed his records sent over. Requested them from Moffitt, sent over, no problems there, except the radiation mapping was completely missing. Surgeons at Shands said without the radiation mapping treatment was too risky. Now I didn't go to this consultation, but in my mind we're on a lifelong journey where eventually we may see total jaw replacement, so I'm not sure what too risky means? I'm also, once again reaching out to Moffitt, hoping maybe there's some place they didn't look for the radiation mapping, because I just can't imagine a situation where you keep the patient records in archives but just not that?

So that's where we are. What I know is that there's mixed information on dental treatment, statistically speaking implants are not impossible, but logistically finding someone who will do it is another story. There's a dentist in Bradenton who advocates for dental care for oral cancer patients, I feel like we're past the dental care stage, so we need to be looking at surgeons who know how to deal with ORN. We've theoretically found surgeons, but not without the radiation mapping. Is there anything I'm overlooking?

Marian

Thanks for the follow up and so glad to hear it is not as serious as originally thought. I recall my doctor not wanting to share the results of the lymph node tests a few days after surgery until everyone got to review it. I pushed him to know as I was aware cancer in the nodes in addition to the tumor on my tongue was significant to my treatment and likely outcome. Short story, he told me then that it was found in my nodes. So, for a week or so, I was ready for rads plus chemo but in the final determination, since it was still inside a single node, the team recommended just rads. I call it the cancer coaster. Like a roller coaster, you cant see whats around the next bend.

Keep us up to date. Best to you.

Nels

Jordan,

Welcome to OCF and sorry you are going through this. After my partial glossectomy, I had 30 radiation treatments to my right side tongue and right side neck over six weeks (60 GY) almost two years ago. I got tradition radiation (not proton). The burn and sores will start around week three and get worse up to a couple weeks after your last treatment. The effect is cumulative. Most food will taste weird or even bad by the end. If you do not have a Vitamix or similar, I suggest getting one. It helped me mix all kinds of meals. I dumped high calorie items such as avocados in to help keep my weight up. I suggest keeping a daily log of everything - your weight, calories, mouthwash, pain pills taken, exercise, etc.

My mouth was extremely dry for months and flavors are still slowly coming back. Not to get too detailed, but I would wake up with my tongue "Velcro'd" to the roof my mouth. That doesn't happen very often now. It gets better monthly still. So, be patient with your recovery. Slowly add foods back. It is exciting each time I could bring back a favorite such as pizza, fries, etc. Acidic items are hard, such as tomato based sauces, fruits like oranges, etc. But, they will come back. I still can not do alcohol but I really don't miss it. Some foods that always tasted good (or good enough) - scrambled eggs, green beans, bland soups, plain ice cream, pancakes, french toast, simple soft breads, bland pudding, bland jello, pot pies. Think bland and soft.

You will likely have to increase your dental visits to every 3 months and increase your budget for dental work. I have had numerous crowns and root canals since. But, even that seems to be flattening out a little now. If you can find a dentist that has treated people post oral radiation treatment, that will help. And, an easy trade when my oncologist shared the stats with and without radiation. My stats for recurrence were cut in half. This obviously is different for everyone depending on all kinds of variables but that made my choice easy.

Sitting in the machine can be a little claustrophobic at first but I got used to it and would close my eyes and take short "naps" in the last weeks of treatment.

Although it is tough, I was able to work part time and exercise (not at my normal level but still did the same activities) almost daily through the whole radiation treatment.

Stay safe and keep the faith,
Nels

We have some similar neurological issues. ALS is the most common motor neuron disease, but for those of us that had radiation 20 years ago, the same symptoms are more likely from dysautonomia. There is a section on the constellation of problems that this radiation related damage can cause in the treatment section of the website, complications of treatment.

My stoma eventually healed in when it was no longer necessary, it sounds like his is a permanent end result. But the mucous issue has never gone away over the years. I have taken antihistamines when it get really bad which help sone but the by product of that is my very dry mouth gets worse.

His problem is common, and humidifiers are only a modest help. The suction machine is necessary and the means for dealing with the worst of it, but years later it is still a problem for many. As to the nerve damage that keeps his throat from channeling liquids and food in the right direction, there are some swallowing exercise protocols to try and strengthen his safe swallow. Many people like me never are able to get that function back. The risk of aspiration of liquids and the resulting repeated aspiration pneumonia is a dangerous problem. While antibiotics will deal with this initially, repeated pneumonia will create antibiotic resistance and they no longer are effective. When that happens there is no alternative but to have a PEG tube put in to eat and drink through. I’ve lived with nothing by mouth for four years now and I miss normal food more than anything else. I blend all my meals in a Vitamix blender, and do not eat that canned pharma company junk. But it’s a lot of effort to eat this way. The alternative is much worse.

I think you should have his swallowing evaluated at the hospital and have them determine if he is a candidate for some kind of swallowing therapy to see if this can be managed as a first step. Getting a feeding tube isn’t the end of the world, but it’s a lifestyle change of major proportions and requires a mental adaptation from him as well. Pretty sure he won’t like the idea if things go that way, but there are few alternatives.

You don’t want him having a larygectomy and losing his voice. That will not impact his safe swallow issue.

Unfortunately if my experience is any guide, this is a function of time and healing. There was a protracted period of time for me where everything hurt so badly that I was not eating as I should, and barely drinking enough water to stay hydrated, it was all too painful.

I was on the strongest of pain killers and nothing helped. Ultimately I ended up with a peg feeding tube because I had lost so much weight. Months later when the healing if the soft tissues in my throat tolerated eating cold really slippery things like chilled canned peaches, I started putting some weight back on.

But in the end the truth is things are going to hurt until the healing gets into full swing. Hope you have an easier go of it than I did, but there isn’t a magic bullet for this. B

Most of the foundations support activities are different than what you are thinking. They are related to seeing patients get referrals into facilities, helping them understand and define their treatment choices, getting the equipment necessary to blend foods properly for PEG feeding at no charge if they have a financial disparity, working with the insurance industry to cover more that they do not now. But we are not engaged in virtual support groups, we just answer questions and offer help here. If you need face to face counseling perhaps your treatment facility has a group of individual sessions you can be part of.

This is the oldest oral head and neck support group there is. It is the only one that is anonymous, where your identities are prevented from being known by anyone, and your information not sold or shared with anyone else.

Virtual groups only work in small numbers of people if they are going to actually interact with someone else. This model was not built to do small groups.

Prayers and healing your way.

Hi
My name is Dan and I was diagnosed with Oral Cancer, BOT, Base of Tongue in February 2017. It has been a long journey. And I will type more as I have time

Briefly, I went to Mexico to Sanoviv (alternative treatments for cancer such as high dose Vitamin C 75k units every other day, Hyperbaric chamber every day, and HyperThermia every day) for treatment for 3 weeks then decided to do radiation there plus all the hyperbaric and hyperthermia. The tumor shrunk. In retrospect, I wish I had done the traditional. Radaiton in Riverside, CA would have been wiser with Chemo and Radiation together for 6 weeks.

I came back to live at my cabin in the mountains I got a g-tube from losing so much weight due to radiation does in the mouth etc. I was on a protein diet for quite a while then in 2018 I was at the City of Hope where they did chemo for 4 months and 5 sessions.

After that, I moved to Southern Orange County, CA to live closer to hospitals and medical and live in a nice senior village. I felt great but forgot I was supposed to start Keytruda after Chemo and did not have an oncologist. In the summer of 2019, the tumor grew back and in October I did CyberKnife - 5 sessions at 45 min. each of targeted radiation. That was hard on me and I made it through though. My speech deteriorated. During the Spring of 2019 before CyberKnife, I had an artery in my tongue burst, probably too much radiation in Mexico, and had surgery to seal it up. Later the other artery burst and they sealed up the other lingual artery. Not fun.

Then in 2020 the tumor grew back and I did 5 sessions of Chemo in Fountain Valley and now I am on Keytruda every 3 weeks. So here I am tumor is growing back or small and the mass they saw recently was a fungal mass that popped out of my mouth a few weeks ago. So this week I will get a cat scan to see if my lungs are clear of fungus.

I feel great, some small pains in my jaw and 2 fistulas that are not fun. One has an exposed jawbone that I can see and feel. I hope and pray it all heals up.

I am active and keep busy walking, my college art class, computer stuff, reading, zoom meetings, my spiritual center, signing songs on Sundays, teaching ASL online when I have clients, chores around the house, petting my cat, and keeping busy, being as joyful as I can and soon to take a workshop on healing yourself, heal your life in 2 weeks, breath work and other things. I love to meditate but with ADHD it is hard but I find ways to do some. That's all for now. More later. Warmly with peace love and wholeness to all, Dan

Welcome Chris and best wishes on the surgery - keep us posted

Thanks Brian

thanks! I was advised to gain weight prior to surgery so I’m working on that . Otherwise, I was told to expect a feeding tube, but probably not trache. I’ll check out that book and the lion fridge analogy. I hadn’t heard of wither one.

Glad to hear you’re on the mend.

Mela,
I had cancer under my left jaw and in my the top node on my neck. Besides removing my jaw, they removed ever node on that side of my neck. I proceeded to have 36 radiation treatments and chemo on top of that. My cancer was extremely aggressive and even though wide margins were achieved by surgery, it was felt to increase my long term survival percentages to greatly. I asked the team the same question- “is it worth it?” - my survival rate for 5 years tripled and maybe double my 10 year survival rate. It is not easy but I want to live to see our grandchild grow up - my salivary glands do not work and my taste is minimal - I knew these things might happen but I wanted to do EVERYTHING possible to increase my long term odds of survival- best wishes to you!

It is always a sad day when we lose someone that we have come to know and care about.

Not knowing the medical specifics about this situation this comment may or may not apply. There is a wide quality bell curve of treatment facilities and individual practioners knowledge and skills. There is also a fair amount of peer reviewed published work on the impact of the choices made in treatment institutions looking at small regional hospitals vs larger teaching university hospitals and NCI designation comprehensive cancer centers. The better funded and staffed institutions have better long term outcomes for a variety of reasons. When talking to patients I understand the insurance coverage and choices they force upon us, as well as the financial constraints of any person or family. But I alway urge people not to let geography dictate their treatment choices, nor convenience. For the most part we get one chance to deal with our disease. It is imperative that patients make an informed choice when deciding on where their treatment take place, and not let the continence of a facility dictate that choice.

In the resources section of the OCF website, there is a link that says best hospitals. It takes people to an unbiased listing and rating of cancer hospitals in the US, done by US News every year. They have a very thorough means of rating the hospitals based on everything from end results, to modernness of equipment, education of clinical staff and much more. You can sort by rating, or by zip code. Understanding that not everyone can leave their insurance service area, it allows them to search locally, and for those that can afford to travel, nationally.

We do not get to make a lot of choices about our treatments. But choosing our team is the one thing that has significant impact that we can do.