When you first got your diagnosis, could you feel or see your cancer getting worse while you waited?

GregP_WN

My latest diagnosis started almost a year ago. I knew there was something going on in my neck and I asked for it to be scoped several times. Each time there was nothing there, but the symptoms have progressively gotten worse. Just in the last week, the pain that I have has doubled or even tripled. I had no pain in the beginning and now I have a little all the time, fairly annoying pain when I swallow or cough and I still have 2+ weeks before surgery. I have an appointment Thursday for pre-op things and go talk to speech pathology to start learning how to take care of a stoma and know what to expect after surgery.

The biggest concern I have is that this thing is progressing and I still have 2 weeks to wait. I guess as long as it doesn't travel away from its primary site there are no worries since all of that is getting taken out. I have been describing what they are going to do in my throat is like gutting a squirrel. I don't know why that popped in my head, but that's what I imagine

JaneA

I can only imagine how unsettling this wait is with your pain increasing every week.

Bengal

I was very lucky in that I only had to wait a little over a month from biopsy confirmed diagnosis until surgery but during that time all I could think about was GET THIS THING OUT OF ME BEFORE IT SPREADS! The fact you have ever increasing pain level just be very nerve wracking. Little more than two weeks now. Hang in there.

GregP_WN

Each day seems to bring a littls something more with it. Little sharp pains or a pain when I turn my neck. It will all be done soon, I just have very little patience for waiting around .

beachbum5817

Greg, I am so sorry that things seem to be getting worse for you. I hope when you have your appointment this week, they will recommend something to, at the very least, ease your pain. I was diagnosed Dec. 10 and had my double mastectomy on Jan. 2, Like you, I felt that was too long, and I felt like things were progressing. It turned out that I was right. In that time, my tumor grew 1 centimeter and 2 lymph nodes in the breast itself tested positive for cancer. The waiting can be unbearable. Take care.

Whitey61

Absolutely, and it then becomes a phyco Somatic illness, every little ache and pain becomes magnified..it's Human nature.

Carool

Greg, I wish your surgery were sooner. As you said, everything there will be removed, so apparently if the tumor grows until the surgery, it won’t affect your chance of it spreading elsewhere. I had to wait a month until my bc was removed, but for some reason I felt assured that waiting a month wouldn’t make a difference. And, unlike you, I couldn’t feel it growing, though I’m sure it did.

Paperpusher

For hubby's second go round he could definitely feel it growing since it was pressing on his esophagus causing pain when he swallowed. He was the one who chose to wait until after Christmas then(surgery to remove RLL was done on Dec 14th--his birthday- of the prior year) for the bronchoscopy and then chemo and radiation.

Teachertina

I also had that feeling of it growing bigger every minute! It was like having an alien in me, (like the movie!). I just wanted it out ASAP! That was the kidney and spleen. Same thing 3 years later when surgery took half a lung and again last year for 1/4th of my other kidney. I didn’t believe them when they said it was slow growing! It was growing regardless! I think being a patient means being patient when they make us wait! It’s terrible for us and our family members too. Hang on a little longer and let us know how you’re doing. Thinking of you every day!

meyati

Yes. The rare cancer seems to set off other cancers of the same type. They look like marbles, pearls, cherries, gravel under the skin-highly visible to all-if even one is disturbed. I had a biopsy of one visible cancer and 4 days later my mouth-nose area was covered with large ones and small ones that made little bumps. I went to the surgeon again and she tried to remove them. The more she cut the more she saw. She sewed my face back on.

I went to my family doctor- and asked him to get me into the oncology clinic. Everybody knew that I had cancer, but 2 things were in play. #1--Presbyterian and Albuquerque. Nothing is easy or logical---all sorts of paperwork is supposed to be done in a few few months- before I could move forward. Each morning I got up and my family pointed out new cancer tumors or a small one became gigantic overnight. #2--This is a type of cancer that people see-all over the face. I think that I might be the only survivor of this cancer--my doctors keep calling me a miracle--Because of this-many cancer clinics won't care for people like me. In Florida, it is legal to refuse to care for people with this type of cancer, and the police will come and escort the crying patient out of the clinic. I knew several people that happened to.

My surgeon called and told everyone about me. I wasn't being contacted-like breast cancer patients are. I went to my family doctor for help in getting into any program. He was flummoxed that I hadn't been contacted yet, and that was abnormal. He called oncology, and he was told that it might take a year for me to get in, because of the type of cancer. He really pitched a hissy fit- screamed and cursed. He said- that we were coming up, and they could see the cancers on my face. I was given an appointment for 2 weeks later.

Meanwhile one big tumor was growing in my surgery site. .That really scared people