Recently Diagnosed

DarcyS said:

Hypopharyngeal cancer

9 years ago my husband was treated for ssc of the piriform sinus.  Stage 4 T1N2bMo.  His tumor location was lower down the pharnax. He was 55 at the time and in great health.

 He did not have metastasis beyond the lymph nodes and received treatment at the University of Chicago.  He had chemo, concurrent chemo and radiation but no surgery.  Today he is healthy, enjoying life and eating anything and everything he wants.  The only side effect is post nasal drip with an occasional cough.  Yes, this is definitely survivable.  Being younger, I believe, helps your body survive and recover from the treatment better.  If possible, I recommend a teaching hospital with a tumor board.

Read the super thread on this site for great information from others who have been there.  I remember the time after being diagnosed as being scary and uncertain.  There is hope and this site is filled with others we can help on your journey.

 this is very comforting news for me  and I thank you for taking the time to respond! I see the ENT for further results Thursday. I have yet to explain the pain in my ribs but I'm sure my  dreaded PET scan will tell all. I've also had some cardiac troubles, palpitations and the sorts, is this normal or due to high anxiety? I became extremely anxious to the point of no rest pretty much. can't even drink my coffee :-(. I live down the road from MD Anderson so I will be referred there,  got the call from the ENT today with his referral. About how long did he have symptoms prior to diagnosis if you don't mind?

DarcyS said:

Symptoms and worry

I know these are very anxious times and it sounds like your body is experiencing some physical signs of anxiety.  Be sure to talk to your doctors about what you are feeling.    During my husband's diagnosis  period, I gave myself an ulcer from excessive worrying. Do you meditate?  I've found this to be very helpful.  My husband did not have any symptoms other than swollen lymph nodes and in hind sight a bit of a sore throat. It took three months to be diagnosed with ssc.

Glad to hear of your referral to MD Anderson and that it is close by.  

I actually did meditate before the anxiety settled in. Now it's very difficult to sit still and focus  on my breathing. I can't stop shaking my left foot and I always fell surged with energy even though I feel like I have less energy. Strange to explain the feeling because I've never been an anxious person so I'm pretty new to anything health wise that's detrimental. Always have been very healthy and athletic, but now I can't lift weights or  run I guess. I told the doctors about my  irregular heart beats and  pain in my left shoulder that travels into my left arm and they told me to halt exerting my body until they figure out everything in full. I do feel a hard painful knot in my front deltoid that I imagine is putting pressure on a nerve and sending pain into my arm but that's just me speculating and nothing confirmed yet. Though the feeling never goes away and  it's fairly new as well, it came with the  left  rib pain. I'll be talking to doc about it here in a couple days to see what he wants to do about it. I've given myself indigestion with all the anxiety I have, maybe even nausea and abdominal pains as well. A feel general sickness has washed over me. I thought I was strong mentally until now. This has proven to be much more of a mental battle so far. I'm excited to meet the team at MD Anderson though and hopefully get headed in some sort of direction. The reason it's taken so long is because I underwent 3 ultrasound that came back showing 2 enlarged lymph nodes about 2cm and 3cm and biopsies on both came back non malignant. I then asked for a ct scan with and without contrast after doing so much lab testing with everything coming back normal I got frustrated and basically told him to ct scan me. Come to find out he was wrong and the site was hiding in my o orophaynx behind my right submandibular node. I'm relieved that the doctors are now listening to me because I really feel like at first they weren't. I'm glad to have  joined you guys here and I really think this will  help with my journey. My family and friends don't really seem to understand what's going on fully with me so I get mixed advice and of course my family is very emotional about the situation so it's very comforting to speak with someone  outside the box if that makes sense. I'm so glad to hear of your husbands success and I hope to follow it. Are there any details you can give me on what I need to be doing to increase my chances and what I need  to ask of my doctors? or do I just go  along with what doctors order from here on out? Thanks again!

DarcyS said:

Trying times

A cancer diagnosis seems to produce extreme anxiety and worry for everyone, including their loved ones.  It wasn't until treatment started and we were doing something instead of waiting that the anxiety began to lessen.  My husband continued to exercise and run until the 4th week of radiation.  I feel this really helped him physically and emotionally through treatment.  The doctors were amazed that he could do this.  If your doctors feel you shouldn't exercise now, maybe taking a walk everyday would be helpful.  If they give you the ok, try to start your exercise regime again.  Eat healthy and take care of yourself is always good advice. If you haven't already, read the superthread on this site.  Lots of good info from others who've been where you are.  

Oh yeah I, thanks for reminding me! I'll go read the superthread this evening when I get home. The wait is  making me very anxious. knowing that I've been dealing with symptoms so long makes it worse. At first when my throat began to get sore close to a year ago, for months I shrugged it off as mono or something that would go away on its own. Never once did it cross my mind that it might be cancer. Now I really regret being so ignorant and careless. I'll keep the thread updated on my situation as I go and maybe also make a blog of my story. I've been thinking about it, what do you think?

DarcyS said:

Most people shrug off a sore

Most people shrug off a sore throat.  Allergies, dry air, too much speaking, we have all done this and justified not seeing a doctor.  Don't be too hard on yourself.  You are on the path to treatment and recovery now.  

Please keep us updated.  I think a blog or any way to tell others your story and possibly help them on their journey is a very helpful idea.

Thank you so much for the confidence! That settles it then, I'm a web app developer so I will start on a new project so that people  can blog their stories and their journey with cancer. I'll use my story to help guide me to do this. I hope to reach people and maybe incorporate some things that will help reach loved ones even after the worst. Say you have kids that are too young to understand, maybe you can store your story with them involved and leave letters there for them in case the worst happens. This is inspiring and I would love  for others to share ideas of what they might like to see in features. It is the age of technology :-)