Waiting on diagnosis

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Waiting on diagnosis

Not sure if this is the place to post or not so I’m sorry if it isn’t. 

 

I started having throat issues in September of 2018. Noticed a hard bump in my throat and a soft patch near that area. My back molar was also hurting so I went to the dentist first. The xrays showed that my teeth were fine and he could see the inflammation in my throat area but told me it was best to see an ENT.

So I went to the ENT who used his fingers to poke around in my throat and said the bone thing was my hyoid and the patch around it was due to inflammation of the hyoid. He told me to wear a mouth guard at night because he believed it was all due to clemching my teeth and if it didn’t improve to come back. Needless to say it did not improve and the patch around it has grown larger in size. 

Went back again as I was starting to have considerable discomfort and he again said it was  my hyoid. No scope....nothing just felt it with his fingers and dismissed it.

Several months later I can still feel the bony protrusion on my throat and the mass around it has grown larger. I have constant ear, jaw and throat pain. Two days ago upon reinspecting my mouth we noticed a growth on the other side of my throat as well as  sores that are very painful on the back of the tongue on both sides. My sore throat and the pain has become almost intolerable.

ive made an appointment with a new ent but just wondered if any of you had any advice or have been through similar issues?

Right now I have a bony protrusion near the hyoid on my left side of throat, a painful patch that seems to be growing over that, a lump on other side of the throat, several large bumps at base of tongue, constant earache, horrible sore throat to the point it hurts to swallow even water,

looking for some advice and wondering what to expect. The new ent I will be seeing says he will do the endoscopy as my symptoms and issues aren’t normal after this long of time. 

Again, sorry if this is the wrong place to post but just looking for some info as Dr. Google is scaring me lol 

whatever is going on is quite painful and I did smoke for almost 20 years. Would be grateful for any input before I see this new ent thanks 

4 REPLIES 4
Cancer Council Team

Re: Waiting on diagnosis

Hi @Stephnash,

 

I just wanted to check in and see how you are doing today?

 

Have had your appointment yet with the new ENT? If so, what have they said? Did they do the endoscopy?

 

I am glad you have sought a second opinion, something sounds not right at all. Please do let us know how you have been getting on Heart

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New Contributor

Re: Waiting on diagnosis

@Stephnash , hi! I don't know if you got your results but I hope this response may help you. I have a soft tissue cancer called rhabdomyosarcoma. It started as a tumor in my ethmoid sinus which eventually grew. About 3 months pre-diagnosis, I was complaining about tooth and jaw pain to my parents. I'm fairly young and still had wisdom teeth coming in so I figured it was just impaction pain so I went to my dentist and had all 4 removed. 

 

A month passes by, and nothing has stopped-my pain is increased and I cry every night. I go back to my dentist and he says everything is fine and I really just probably have TMJ and need a bite guard. I begin having excruciating ear aches and chewing is so impossible I start losing a lot of weight. I see another dentist and at this point, I notice a weird protrusion in the back left of my throat near one of the tooth removal sites. It's hard and swollen, but not solid like bone so I point it out. The dentist comes back with a perfect X-Ray and blood results and says he thinks it must be an infection and he'd like to drain it. Once he drained it, all that came out was blood so he said "I must've just always had that growth".

 

I got my diagnosis via MRI a week late due to a completely unrelated issue (broken hip) and learned I had been living with rhabdomyosarcoma for about 4 months and if I hadn't caught it sooner, I would be dead. My advice is trust your gut and always get an MRI if you think something is seriously wrong in your body. I hope that your case isn't like mine and you get positive results, but if they are I hope we can make you feel welcome here :+)

Regular Contributor

Re: Waiting on diagnosis

It's like Tom Petty sang, "the waiting is the hardest part"

In my opinion, the phase where you have any kind of uncertainty regarding your diagnosis is the worst.  You immediately start thinking worse-case-scenarios, and have to live in that limbo for however long it takes for them to nail down your specific individual prognosis.

 

I had stage 4 tonsil cancer (in the clear now), and spent about 4 weeks not knowing if it had spread elsewhere in my body (and I'd be dead within 6 months) or whether I had a fighting chance at treatment (which was what happened).

 

It's the not knowing, and the waiting, that is a special kind of hell.

 

My advice is to approach it on two levels:

 

Internally:  in your own mind and spirit, park your expectations and wait on the facts.  Nothing to be done pending medical advice.  Don't even necessarily spread the news too far until you have more facts.  (up to you depending on your friends/family situation)

 

Externally:  for the world around you, act as if it's worst-case.  Make sure your legal/banking stuff is all in order (it's good to have this stuff sorted out before you get caught in the rollercoaster of treatment, really, so that diagnostic lull period has a practical use).  Spend time with your loved ones as if you know it's finite (this is probably a good way to live life in general).

 

The waiting is the hardest part.

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Contributor

Re: Waiting on diagnosis

You probably don't have cancer.
I don't know why you are not on antibiotics like cipro.
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