Neck Dissection Results, Further Treatment, Spindle Cell Features

JAL23

lorijeannj said:

JAL23, how are you making out

JAL23, how are you making out?

Hi Lorijean,

Hi Lorijean,

Thanks for asking. We wound up going with the whole family to Atlantic City over Thanksgiving break. We have some family nearby in Little Egg Harbor and so we made of a fun weekend of it. Ate a lot of my favorite foods, spent time with family, and tried to relax as much as possible. Wound up with a net loss financially, but the ups and downs at the casino are always fun!

Treatment is set to begin Dec 4th. I'll make a seperate thread regarding that experience. We are bracing for the worst, and hoping for the best.

JAL23

SuzJ said:

You can do this!

Something you said - about being skeptical of being in the cure box - get out of that mindset - You CAN and WILL do this. You will WIN.

 

It's not easy, but nothing worth having is easy, right?

 

Rads and Cisplatin are not a walk in the park, but you can do this

I thought I was superwoman - that it was going to be  easy (hahahah) while I certainly don't feel like I had it as bad as some others, my armor got a little dented and my self confidence took a swift kick.

 

But I'm here, rads, cisplatin, neck disection later - Im here, and the expiration date I felt I had stamped on my back in january/february - has faded away.

A big part of the battle is believing in your team. Sounds like you have a good one now.

 

You are going to do this too, and you'll be here cheering others along 6 months after, just like I am.

Thank you, SuzJ.

Thank you, SuzJ.

It really helps to hear this. I am anticipating further armor denting at this point, but I still have to hang onto the hope that I will get through the treatement and life will return to a "somewhat" normal.

Congrats on making it six months. I look forward to a time when I can cheer on others from that vantage point.

lorijeannj

JAL23 said:

Hi Lorijean,

Hi Lorijean,

Thanks for asking. We wound up going with the whole family to Atlantic City over Thanksgiving break. We have some family nearby in Little Egg Harbor and so we made of a fun weekend of it. Ate a lot of my favorite foods, spent time with family, and tried to relax as much as possible. Wound up with a net loss financially, but the ups and downs at the casino are always fun!

Treatment is set to begin Dec 4th. I'll make a seperate thread regarding that experience. We are bracing for the worst, and hoping for the best.

lol, that is where I am

lol, that is where I am located, A.C. area.  Glad to hear you had a relaxing time and got some time for Black Friday (or Red for you ).

Polkadrummer

Keep positive JAL

I am 79 years old and in good shape engaging in Senior fitness classes three times a week. Whats that have to do with you? I’m trying to tell you to stay positive and optimistic as it served me well going into the following procedures.

In 1997, I was diagnosed with squamous cell carcinoma at base of tongue (left) and had a left radical neck dissection, midline mandibulotomy for left tongue base resection and a left pectoralis cutaneous major flap and , yes, they sacrificed the internal jugular, sternocleidomastoid, and spinal accessory nerves in the left neck, as well as spinal and cervical sensory branches of those nerves. This eleven and a half hour surgery was done at University of California, Irvine which is a teaching hospital.

This was followed by 20 days of radiation but no Chemo. If you do have radiation you will have to be aware regarding any tooth extraction to avoid osteoradionecrosis.

 

I am happy to say I retain all my taste senses and even enjoy spicy foods.

 

stevenpepe

I was treated at Procure last

I was treated at Procure last year by Dr. Lee. She's a real spitfire of a doctor, although I only saw her once a week. That place is beautiful and when you're done, they hold a nice graduation ceremony on your last day. This was my second round of rads after a second neck dissection (non-HPV SCC of tongue with spread to both sides of neck).

2016 was a tough year for me. Like most, I'm left with the usual scars, but I've gotten used to living a new normal. Things get better but be prepared for other possible long term issues after radiation. The proton therapy will leave you with considerable fibrosis, making neck movement challenging. Everyone's case is different but you're in good hands with MSK. Good luck!

Curlyn

Hi Jal, Big hugs to you! I

Hi Jal, Big hugs to you! I know every case is different but folks have given you lots to think about. I am just a newbie here but my cancer also spread before it was diagnosed ( no one's fault though). I ended up c sacrifice of everything in my right neck but the internal carotid. What a shock to wake up sounding like Marge Simpson, couldn't move my right lip or even swallow. I wanted to die rather than go through chemorad. But I found this site and it's been 3 wks since I finished. My speech has come back slowly, can smile, but even though I swallowed until last day of my treatment, through no fault of my own my epiglottis swelled from the radiation and I required steroids and an NG tube in order to get nutrition/ and or aspirate. But even that has improved and I drank 2 full Boost today! Cry and rage, it helps. Let it out. I am sure we all have some form of ptsd but at the end of the day it is all doable and you will get through it. I hope to wake up one morning and not have cancer as my first thought. And I am already planning my first day back at the gym. Keep us posted. PS. Good luck tomorrow. Lean on everyone. PPS. I had the Cisplatin, too, and like others, I did not lose my hearing. PPPs. Depending on where the bulk of the radiation is directed, and if you have had extensive surgery first, your swallowing may be much more affected (and a PEG might be a lifesaver for nutrition) than someone else in different circumstances. Remember, you aren't in competition, you are simply doing what is required for your particular plan of recovery.

Frances_S

Jal23 Please Stay Positive and Don't Ever Lose Hope

Hi Jal23,

I was diagnosed with SCC 16 years ago when they were not testing for HPV. My doctor at the time also allowed me to walk around with this cystic tumor on the right side of my neck for two years, telling me this lump was from acid reflux. The doctor also did not take the CT scan findings seriously and did not do a biopsy. Long story short, during surgery he broke this 5 cm stage 4 SCC "cystic" tumor in my neck. Being a mother of four I was advised to have a modified neck dysection and radiation, to avoid the cancer cells from seeding. This was extremely frightening. However, having four children I was willing to do "whatever" it takes to survive. 

This May I discovered a lump on my husband neck. By June he had a diagnosis of SSC, HPV 16 positive with no primary found. I have a feeling my husband had this tumor for a very long time, he admitted to ignoring it, because of everything he watched me go through. The good news is he just finished his IMRT radiation and Chemo. The treatment was not an easy road for him. He is only two days post treatment. We also went to "Memorial Sloan Kettering" in Harrison NY, because my children and I were very pro-active just like your wife. 

Don't be skeptical. You need to remind yourself everyday that you are bigger and stronger then these cancer cells and with the help of your Doctors and your faith, you are going to Stomp this cancer out.

I came on this sight to find people who are post opt, reading your story touched my heart.

PLEASE Don't you every lose hope, my first doctor was a nightmare too!

 

JAL23

stevenpepe said:

I was treated at Procure last

I was treated at Procure last year by Dr. Lee. She's a real spitfire of a doctor, although I only saw her once a week. That place is beautiful and when you're done, they hold a nice graduation ceremony on your last day. This was my second round of rads after a second neck dissection (non-HPV SCC of tongue with spread to both sides of neck).

2016 was a tough year for me. Like most, I'm left with the usual scars, but I've gotten used to living a new normal. Things get better but be prepared for other possible long term issues after radiation. The proton therapy will leave you with considerable fibrosis, making neck movement challenging. Everyone's case is different but you're in good hands with MSK. Good luck!

Hi Steven,

Hi Steven,

Dr. Lee is amazing, isn't she? She certainly commands a presence to say the least. I am 100% certain in trusting her radiation plan is my best chance.

As far as Procure NJ goes, I love that fireplace they have in the seating area and I agree it's really beautiful. My wife and I watched a few of the ceremonies while waiting in the lobby. It's really emotional, and they play the Rocky theme and have the person ring the bell on the wall. What a cool place!

I agree about preparation for side effects, but it seems like no matter what you receive (proton beam vs. imrt) the possibility is still there. Dr. Lee is quite adamant about swallowing throughout therapy, so that leaves me somewhat hopeful for the potential of fewer side effects. I've been doing the MSK stretches for my neck and tongue as well.

John

JAL23

Polkadrummer said:

Keep positive JAL

I am 79 years old and in good shape engaging in Senior fitness classes three times a week. Whats that have to do with you? I’m trying to tell you to stay positive and optimistic as it served me well going into the following procedures.

In 1997, I was diagnosed with squamous cell carcinoma at base of tongue (left) and had a left radical neck dissection, midline mandibulotomy for left tongue base resection and a left pectoralis cutaneous major flap and , yes, they sacrificed the internal jugular, sternocleidomastoid, and spinal accessory nerves in the left neck, as well as spinal and cervical sensory branches of those nerves. This eleven and a half hour surgery was done at University of California, Irvine which is a teaching hospital.

This was followed by 20 days of radiation but no Chemo. If you do have radiation you will have to be aware regarding any tooth extraction to avoid osteoradionecrosis.

 

I am happy to say I retain all my taste senses and even enjoy spicy foods.

 

Hi Polkadrummer,

Hi Polkadrummer,

Wow! 20 years ago. Your message leaves me hopeful. Thank you for sharing.

John

JAL23

Frances_S said:

Jal23 Please Stay Positive and Don't Ever Lose Hope

Hi Jal23,

I was diagnosed with SCC 16 years ago when they were not testing for HPV. My doctor at the time also allowed me to walk around with this cystic tumor on the right side of my neck for two years, telling me this lump was from acid reflux. The doctor also did not take the CT scan findings seriously and did not do a biopsy. Long story short, during surgery he broke this 5 cm stage 4 SCC "cystic" tumor in my neck. Being a mother of four I was advised to have a modified neck dysection and radiation, to avoid the cancer cells from seeding. This was extremely frightening. However, having four children I was willing to do "whatever" it takes to survive. 

This May I discovered a lump on my husband neck. By June he had a diagnosis of SSC, HPV 16 positive with no primary found. I have a feeling my husband had this tumor for a very long time, he admitted to ignoring it, because of everything he watched me go through. The good news is he just finished his IMRT radiation and Chemo. The treatment was not an easy road for him. He is only two days post treatment. We also went to "Memorial Sloan Kettering" in Harrison NY, because my children and I were very pro-active just like your wife. 

Don't be skeptical. You need to remind yourself everyday that you are bigger and stronger then these cancer cells and with the help of your Doctors and your faith, you are going to Stomp this cancer out.

I came on this sight to find people who are post opt, reading your story touched my heart.

PLEASE Don't you every lose hope, my first doctor was a nightmare too!

 

Hi Frances,

Hi Frances,

Thank you for sharing. I am going to take your story to heart and fight. I do appreciate you sharing. Sometimes it's quite hard not to feel like I'm falling and no one is trying to catch me - as you describe, being skeptical.

John

JAL23

Curlyn said:

Hi Jal, Big hugs to you! I

Hi Jal, Big hugs to you! I know every case is different but folks have given you lots to think about. I am just a newbie here but my cancer also spread before it was diagnosed ( no one's fault though). I ended up c sacrifice of everything in my right neck but the internal carotid. What a shock to wake up sounding like Marge Simpson, couldn't move my right lip or even swallow. I wanted to die rather than go through chemorad. But I found this site and it's been 3 wks since I finished. My speech has come back slowly, can smile, but even though I swallowed until last day of my treatment, through no fault of my own my epiglottis swelled from the radiation and I required steroids and an NG tube in order to get nutrition/ and or aspirate. But even that has improved and I drank 2 full Boost today! Cry and rage, it helps. Let it out. I am sure we all have some form of ptsd but at the end of the day it is all doable and you will get through it. I hope to wake up one morning and not have cancer as my first thought. And I am already planning my first day back at the gym. Keep us posted. PS. Good luck tomorrow. Lean on everyone. PPS. I had the Cisplatin, too, and like others, I did not lose my hearing. PPPs. Depending on where the bulk of the radiation is directed, and if you have had extensive surgery first, your swallowing may be much more affected (and a PEG might be a lifesaver for nutrition) than someone else in different circumstances. Remember, you aren't in competition, you are simply doing what is required for your particular plan of recovery.

Hi Curlyn,

Hi Curlyn,

Thanks for sharing. It really is such a mountain to climb. Some days are better than others, and now that I'm in treatment, it's a lot of anxiety about what each day is going to bring. I too wish for a day where cancer isn't at the forefront of practically everything.

John

Hissyfit33

I am praying for you.  hoping

I am praying for you.  hoping It turns out well.  hugs!!

paula002

Hello!

Hey Jal21!

Hope that you are well!                                                                                                                                                                                                                                                 

I saw your post and can relate.  I was diagnosed with Nasopharyngeal cancer stage 2 in 2007.  On May 18th, it's going to be 10 years that I ended treatments.   The first 5 years, after treatments were good, minimal side effects.  But in 2013 the left side of my tongue was paralysed and in 2014, so was the right side.  I cannot speak, eat, drink nor swallow my saliva (because I still have some).  I feed my self only with thick liquids and every day is a big challenge.  It has been pure Hell!  I have been trying to avoid the PEG because I hate that thing so much.  Had it while in treatment (2007) but never used it.  Unfortunately I think that I might have to do so this year but I don't knbow how I will cope with it.  I will probably be really depressed...

Anyways, the doctors always blamed my tongue paralasys on nerve dammaged caused by the radiation.  They also always told me that there is nothing that can be done.  Now, I always ask doctors about trying different things or maybe if there ar options in oher countries, and so on...  Well, One of my ENTs told me "You know there are people worse off than you!!"  A Dr should never say that to a patient, especially when he has no idea what my daily struggles are (trust me it's very bad). 

This to say that when you write "You know the old saying, "There's always someone worse off than you?" Well, I feel like I am the person they are referring to in that saying at this point.", I feel like that too.

 

Take good care,

 

Paula