a miracle happened.
Comments
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feeling good
A week today since my neck dissection and finding out I dont have cancer at all. I am happy my ent didnt go all the way and do a radical dissection like she planned. When she got the news from pathology that it most likely wasnt cancer, she didnt take out as much. As it is I have a numb ear, numbness in my jawbone and collarbone and upper chest. Skin of my scalp above my ear is tender. But all that doesnt matter, I dont have cancer. I am feeling wonderful.
Thankyou to all of you for being here for me. You all kept me from getting so stressed out. I will pray for all of you.
Mary0 -
the name of my tumor ( cyst)
Had my stitches out yesterday. I got the name of my tumor. It is called "pilomatrixoma" I looked online and it is found usually in young children. Is a cyst of calcified hair cells. I found one site that said adults 50-65 can get it though is rare. I read that it can show up as cancer in a biopsy.
While in surgery, my doctor had to treat my mass as though it was cancer, but rather then a radical dissection I had a modified one. Was the day after surgery that we got the final report that it was never cancer. I kept asking " Are they sure????"
My incision in my neck is long. Numb in neck, jawbone, collar bone and ear. I dont know if I will get feelings back, she said probably not in my ear. I feel like I have a clamp on my neck, feels so tight. I do good up until afternoon then have to take a pain pill.
Still this is nothing compared to what all of you have gone through. My thoughts and prayers are with all on here.
Mary in Northern California0 -
Hi MaryMaryRC said:the name of my tumor ( cyst)
Had my stitches out yesterday. I got the name of my tumor. It is called "pilomatrixoma" I looked online and it is found usually in young children. Is a cyst of calcified hair cells. I found one site that said adults 50-65 can get it though is rare. I read that it can show up as cancer in a biopsy.
While in surgery, my doctor had to treat my mass as though it was cancer, but rather then a radical dissection I had a modified one. Was the day after surgery that we got the final report that it was never cancer. I kept asking " Are they sure????"
My incision in my neck is long. Numb in neck, jawbone, collar bone and ear. I dont know if I will get feelings back, she said probably not in my ear. I feel like I have a clamp on my neck, feels so tight. I do good up until afternoon then have to take a pain pill.
Still this is nothing compared to what all of you have gone through. My thoughts and prayers are with all on here.
Mary in Northern California
Thanks for the up-date I am just so glad that is was not cancer.
God be with you0 -
YesHondo said:Hi Mary
Thanks for the up-date I am just so glad that is was not cancer.
God be with you
And play it forward, Mary. Do this for all of us. You know you have all the blessings that we have to give you in your long future. Take some time to heal, then please play it forward, Nurse Mary.
Believe
kcass0 -
Glad it wasntKent Cass said:Yes
And play it forward, Mary. Do this for all of us. You know you have all the blessings that we have to give you in your long future. Take some time to heal, then please play it forward, Nurse Mary.
Believe
kcass
Mary
Congratulations on your good news. Still Best Wishes
Dave0 -
New with lots of questions
Mary,
Your story reminds us all that there are still miracles. My partner, Mark is newly diagnosed. And there are some weird factors going in, like he has had a lump on his neck for years that just recently began to grow, he has 2 other lumps on his body, including his torso, there is no outwardly sign of cancer in his mouth or on the suspected tonsil...So your story has grabbed my attention, and I have to ask, was there any other diagnostic test other than the needle biopsy that indicated you had cancer? Did you have a PET before your extensive surgery? We have an appointment with the ENT oncology guy next week, and it may be a stretch, but there is no bad question, right?
Kim0 -
Hi KimKimba1505 said:New with lots of questions
Mary,
Your story reminds us all that there are still miracles. My partner, Mark is newly diagnosed. And there are some weird factors going in, like he has had a lump on his neck for years that just recently began to grow, he has 2 other lumps on his body, including his torso, there is no outwardly sign of cancer in his mouth or on the suspected tonsil...So your story has grabbed my attention, and I have to ask, was there any other diagnostic test other than the needle biopsy that indicated you had cancer? Did you have a PET before your extensive surgery? We have an appointment with the ENT oncology guy next week, and it may be a stretch, but there is no bad question, right?
Kim
Hi Kim,
I had a small lump on the back of my neck. My primary doctor thought it was a cyst but sent me to the ENT. She did a CT scan first that showed just the lump. Then a needle biopsy. Now this came back as squamous cell carcinoma! She then ordered a PET scan and it just showed this one lump only. So she scheduled me for surgery for a neck dissection ( which as everybody knows I waited 5 weeks to have!) As she had my neck open and sending specimens to the lab everything was coming back negative for cancer. Instead of the radical dissection she did a modified. She told me that until she had final pathology back she had to still treat the lump as if it was cancer. The next day she called me while I was in the hospital that the lump was never cancer at all. What I had was called ( PILOMATRIXOMA) this is a cyst found in children. Is is being found in adults ages 50-65 but rarely. I have done research on this and in a needle biopsy can show up as squamous cell carcinoma and being I am 56 they said it was cancer. With the modified neck dissection she also did biopsies for my throat, tonsils etc, and all negative. This was a miracle for me.
I hope all goes well for your partner. Where is the lump on his neck? With a postive SCC diagnois the only way to know 100% is with the neck dissection surgery.
Mary0 -
lumpsMaryRC said:Hi Kim
Hi Kim,
I had a small lump on the back of my neck. My primary doctor thought it was a cyst but sent me to the ENT. She did a CT scan first that showed just the lump. Then a needle biopsy. Now this came back as squamous cell carcinoma! She then ordered a PET scan and it just showed this one lump only. So she scheduled me for surgery for a neck dissection ( which as everybody knows I waited 5 weeks to have!) As she had my neck open and sending specimens to the lab everything was coming back negative for cancer. Instead of the radical dissection she did a modified. She told me that until she had final pathology back she had to still treat the lump as if it was cancer. The next day she called me while I was in the hospital that the lump was never cancer at all. What I had was called ( PILOMATRIXOMA) this is a cyst found in children. Is is being found in adults ages 50-65 but rarely. I have done research on this and in a needle biopsy can show up as squamous cell carcinoma and being I am 56 they said it was cancer. With the modified neck dissection she also did biopsies for my throat, tonsils etc, and all negative. This was a miracle for me.
I hope all goes well for your partner. Where is the lump on his neck? With a postive SCC diagnois the only way to know 100% is with the neck dissection surgery.
Mary
Mark's lumps are under his jaw. They say there are 2 lymph nodes involved. But again, there was one lump there for a very long time (years). I too researched pilmatrixoma and saw the age range (he is in it) these lumps appear on other parts of the body, like the torso (he has that). Worrisome thing there are TWO lumps and that is more rare than having this kind of tumor at all. I still go back and forth from disbelief to hunkering down for the big battle ahead. Don't want to feed my denial, but there is no reason not to ask. Wish there was a better way to be sure than neck discection. Hope you are feeling better every day. A miracle like yours has the ability to restore a lot of things, I am sure.
(Extra question: how do I get a picture on my posts?)0 -
Hi Kim,Kimba1505 said:lumps
Mark's lumps are under his jaw. They say there are 2 lymph nodes involved. But again, there was one lump there for a very long time (years). I too researched pilmatrixoma and saw the age range (he is in it) these lumps appear on other parts of the body, like the torso (he has that). Worrisome thing there are TWO lumps and that is more rare than having this kind of tumor at all. I still go back and forth from disbelief to hunkering down for the big battle ahead. Don't want to feed my denial, but there is no reason not to ask. Wish there was a better way to be sure than neck discection. Hope you are feeling better every day. A miracle like yours has the ability to restore a lot of things, I am sure.
(Extra question: how do I get a picture on my posts?)
About your picture,
Hi Kim,
About your picture, go to your profile page and there is an edit tab. I think that is where I put on my picture.
My lump was far back near my hair line. Wasnt even in a lymphnode. Has Mark had a CT scan or a PET scan yet? Thats what I had done. Then since I had the SCC dianosis it had to be taken out. The people on this site got me through all this. They have been through it all.
I was in shock when I was told I didnt have cancer. My primary doctor all along had told me he thought it was just a cyst.
I hurt alot, but it will go away in time.
Mark will make it through all this, people on this site will help you both.
Mary in Northern calif.0 -
ThanksMaryRC said:Hi Kim,
About your picture,
Hi Kim,
About your picture, go to your profile page and there is an edit tab. I think that is where I put on my picture.
My lump was far back near my hair line. Wasnt even in a lymphnode. Has Mark had a CT scan or a PET scan yet? Thats what I had done. Then since I had the SCC dianosis it had to be taken out. The people on this site got me through all this. They have been through it all.
I was in shock when I was told I didnt have cancer. My primary doctor all along had told me he thought it was just a cyst.
I hurt alot, but it will go away in time.
Mark will make it through all this, people on this site will help you both.
Mary in Northern calif.
Mary,
Thanks a bunch for telling me how to get the picture up. I love this man. But as you talk more about you case I am less hopeful for our own miracle. I can only hope now that the primary is in the tonsil and there are no distant mets on the PET. That, I believe will be our best case scenerio at this point.
So happy for you...a reminder that there are still long shots! It keeps hope alive.0
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