SCC - met with Robotic Surgeon today - with a plot twist

SQLNOLE

This is what we learned today:

My goodness it's complicated. The doctor started off by saying that he recommends radiation and chemotherapy.  However this doesn't work very well given the fact that I do not have a permanent job and I don't have long-term disability.  So we're meeting with the Radiation Oncologist next week sometime (to discuss the radiation/chemo only option) and scheduling a PET scan also.

The doctor said that because my lymph node tumor was greater than 3 centimeters that I have an N2a classification - Stage IVa.  He said, based on this classification, that 30% of the time the cancer has spread outside of the lymph node, which yields an extremely bad prognosis and necessitates chemo and radiation.

Based on this I am leaning towards going with the surgery strategy first, because there is a chance that I won't have to have the chemo and radiation.  Also this will buy me time to find a full time job and get long term disability insurance.

Chaos ensues.

CivilMatt

choices

SQLNOLE,

You are in a tight spot, a frightful situation.  In a perfect world you would get just the treatment required to kill the cancer, but we are not in perfect world.  I was stage IVa and was given all the same choices you have been given and I chose to throw everything at it, but I was not too concerned with lack of coverage.  That puts a different spin on things.

It is best if you get treatment right the first time, nobody wants to go through the side effects twice and you certainly do not want the cancer to get a foothold.

It is going to be hard to pin your doctors down, but you want them to be as honest as possible.

Best of luck,

Matt

SQLNOLE

CivilMatt said:

choices

SQLNOLE,

You are in a tight spot, a frightful situation.  In a perfect world you would get just the treatment required to kill the cancer, but we are not in perfect world.  I was stage IVa and was given all the same choices you have been given and I chose to throw everything at it, but I was not too concerned with lack of coverage.  That puts a different spin on things.

It is best if you get treatment right the first time, nobody wants to go through the side effects twice and you certainly do not want the cancer to get a foothold.

It is going to be hard to pin your doctors down, but you want them to be as honest as possible.

Best of luck,

Matt

Thanks Matt
One upside in my mind to surgery is knowing if there is extra-capsular spread, since it is so predictive of long-term prognosis.

After all, I am a data-driven guy!

If I went straight to chemo/radiation, then I would always wonder about that.

wmc

I am sorry to have to say this....

Please believe me I am sorry to say this but I would guess you want the truth. You won't qualify for long term disability where they pay you. Many companys will offer short term [6 months ] and pay you through the EED. Now you can go out on long term [24 months] but you won't get paid by any company because you have the illness. You have to sigh up 5 years before you get any major illness. Your doctor should be able to sign you up on state disability which would be short term total disibality.

I could not sigh up for work long term insurance because I had COPD years before I got cancer, and I have the best company to work for. I was told to go out on dissability and run that out, [it is unpaid] so they can keep me insured the same as when I worked, and not to retire. They are paying the main part oh my insurance, life and medical, dential, vossion on my wife and myself and I pay the same as when I worked. Now I am total disabled and my insurance even paid for a company to do all the paperwork and get it for me. They charge up to $6000 as a fee, but that was paid for also. I never was even sent to any doctors other than mine.

I do recomend surgery first as they cut through undamaged tissue. I do believe the doctores will recomend both chemo and radiation to fight this. I know this is not what you want to hear, but this is your best chance to beat this as it went to lymph glands. Mine was just befor surgery T4; N2; M0. The tumor was the size of a very large grape, ot the first diget of your thumb. 3cm x 2.5cm x 2.5 cm just above my vocal cords and pressing on the left one. SCC Superglottic Stage 4. When they got in it had not spread and it was T3; N0; M0. and they did a neck dissection on both sides and removed 86 lymph glands, and my larynx, They did a full laryngectomy and I breath through my neck, but I beat it.

You are going down one heck of a rough road, but you can and will beat this. You have to fight with everything you have, and never give up. On real bad days you just take one day at a time. You will get lots of support here. So many have gone through this and many still are. We also have many caregivers that have been right along side, and they help other caregivers so much. Sorry again for being blunt, it is just what I have been through and learned. You will get through it.

Bill

the_wife

Social Security

I agree with Kent - filing for the compassion allowance through Social Security is probably your best option. I've heard it allows you to retire early with your full SS benefit. If you need help, call the American Cancer Society. Most likely they will tell you to just go ahead and file online. You don't need a lawyer to do this. Like Kent said, you won't be able to work - let alone find and start a new job at this point - and you need to concentrate on your treatment. Check with a social worker at your hospital or clinic. They may have sponsors to help those without insurance. If not, they should be able to help you find financial resources. Go with your best and most aggressive treatment right out of the gate. I wish you all the best. Keep in touch!

Here is the link for SS:

https://www.ssa.gov/planners/disability/dqualify4.html

SQLNOLE

Thanks all
I am not expecting to go out on LTD, just to have it in case we need it.

I do not qualify for anything that is needs based. I am a software developer and a CPA. : -)
As an independent contractor, I have to buy private health insurance, which is $2,500 a month (family of four). I heard someone mention something about "affordable" healthcare, but I must have gotten in the wrong line!

Thank you Bill, Kent and "the Wife" for the excellent information of which I was largely unaware.

Duggie88

SQ

Once you start its best to be prepared in the event surgery isn't enough. I did the surgery and the doc pushed me towards radiation just to make sure. It was a no bariner for me because I wanted to make sure cancer had less of a chance of making a comeback. 

As for Affordable Health Care............. it's like I tell my wife when she buys one and gets one free..............there is no such thing. I am a Trustee on a H&W Fund and your paying alot for coverage with no disability.

I seen alot of good advise................wheigh in on all of it.

Enjoy the day................I do every one of them.

      Jeff

fishmanpa

Ahh yes... choices indeed

Hi SQLNOLE,

Your situation sounds similar to mine. I was N2b Stage IV as well and was told a similar scenario. The twist with me was an unknown primary. I had robotic surgery at Johns Hopkins and they removed a couple large (5cm+) nodes along with 23 additional. They were extracapsular so 6 weeks of chemo and rads followed after a short healing time. 

I had a choice of just chemo/rads too and opted for the surgery because as my team put it.. "Lets get the cancer out of there and clean up the rest if needed". I'm cancer free nearly three years now.

Concerning work? There was no way I could have worked during treatment. Besides the illness, I was staying in Baltimore at a Hope Lodge during the week for treatment. That being said, I worked, with just some time off to heal from surgeries, until I started treatment in mid March 2013. I returned to work right after Memorial day. While I couldn't do an 8 hour day at first, I was back to full days by July. I was fortunate and blessed in that my friends threw a benefit and that along with some fundraising got us through financially for the time I was off.

Good luck with whatever you decide. It's pretty rough no matter how you d it but as many say it's "doable".

Positive thoughts and prayers

"T"

 

 

 

donfoo

what the doctors say

The doctor started off by saying that he recommends radiation and chemotherapy.  

Listen and choose an option the doctors offer. 

Based on this I am leaning towards going with the surgery strategy first, because there is a chance that I won't have to have the chemo and radiation.  Also this will buy me time to find a full time job and get long term disability insurance.

If the doctors offered only surgery first, then this is reasonable. If you are the one leaning this way and it is not something the tumor board supports, you do not want to go down that path, no matter what your reasoning and current situation.

Unfortunately, the Beast only wants to kill you so you need to fight the battle to win.  It seems like the doctors are concerned about cancers that may have escaped beyond the tumors. If that is the case, then you no luxury of time to delay chemo and radiation. They are offering you the chance to hopefully kill all the distant micro cell cancer cells before they grow sufficiently large to be dectected in imaging.

Certainly, the biosy taken during surgery can establish clear margins but questions may remain if micro cancer cells have escaped eleswhere.

As long as the cancer is loco-regional at most, there is a good chance they can get it all now. Sometimes in low staged SCC oral cancer in young patients, a surgey only option may be recommened as there is a tradeoff in QOL and risk. It's pretty rare stage 4a is treated without rads.chemo. by definition stage for measn you have some form of spread, so you really want to ensure it is treated everywhere it may be hiding. 

If you do choose surgery only, just make sure this is one of the options supported by your primary team or a second opinion. It would be very unwise to choose an option not fully supported by your team.

Good luck, don