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Get a second opinion

arak_83
Posts: 4
Joined: Feb 2013

My mum at 55 was diagnosed with aggressive squamus cell carinoma 2 weeks ago. The tumor takes up the right nasal cavity, Right maxillary sinus, Ethmoid sinus cavity and erroded the bone between the nasal cavity and eye socket and possible nerve damage in the cheek. The ent team (ent surgeon, maxo facial surgeon, professor in maxo facial surgery) she seen first recommended major surgery invloving the removal the the right eye, right eye socket, right nasal cavity, right maxillary bone and then grafting the hole from the eye brow to the middle of the cheek with skin from the thigh after the surgery would follow with 6 wekks of radio.  My mums first reaction was "well im not having surgery".  "How am i suppose to live with half a face????".  Having only been told a week ago she had cancer this was a lot to take on.

Rather distraught we sort a second opinion from a major hospital in sydney Royal Prince Alfred.  The team of doctors involving a radiologist oncologist, head and neck surgeon that specialises in malignant nasal tumors and ent endoscopic surgeon. The endoscopic surgery they have opted for will be the removal of bone in the corner of the eye, removal of the nasal tissue (reconstructed at a later date) in the right cavity, removal of the tumor . So she may have a small skin graft in the corner of her eye if the tissue is damaged, and a slight chance that they may remove the eye, they wont know for sure until they operate.  This surgery too will be followed with 6 weeks of radio. If she does loose the eye a prosthetic one can be worn in time as she will still have her eye socket. Completely different surgery, recovery time, and the important thing to her she keeps her physical appearence. 

So please if possible get a second opinion!

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

Thank you for sharing. That is a powerful example of the need for a second opinion. I'm happy your mum was offered the second option.

Deb

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

I can't emphasize the need to get a second opinion enough. When I found out I had cancer, I was immediately hesitant about treatment locally but I rationalized it with skewed logic. How much different can it be? Cisplatin is Cisplatin right? Rads are rads right?

WRONG! 

I have a friend who recently went through this. Stage IV H&N. He was treated at Johns Hopkins. He couldn't speak any higher of them. Still, I was rationalizing treatment locally. If I can get treated locally (20 minutes away) I could continue to work. I need to work to pay the bills etc. etc. 

Then, several things happened that didn't sit well with me. After the PET scan showed the slight up take in my right tonsil, my ENT advised taking my tonsils out. It made sense. At that point we were dealing with an unknown primary. So, Dec. 21st out they came. I went back immediately after the New Year only to find out that all the biopsies were negative.  When I was in his office, I asked if he wanted to check out how I was healing and he said "No, I've seen this a thousand times, you're fine."  Really?... you know this how? He then referred me to a radiation oncologist. I asked about the cancer center here and expressed my concerns. He spoke highly of a couple of doctors and assured me I'd be in good hands. Then I asked about a chemo oncologist. After all, we were dealing with an unknown primary. Almost as a second thought, he told the nurse to refer me to the chemo oncologist. 

He then said, "I'll see you in 6 months. Good luck". Really? I felt like I had just been blown off and left for dead. 

To make a long and scary story shorter, I'm SO happy I went for a 2nd opinion at Johns Hopkins. I feel the "Team" has my best interests at heart (locally there was no team. One hand didn't know what the other was doing!). It doesn't hurt that Johns Hopkins is the highest rated H&N cancer center in the country (3rd best overall cancer center), compared to a program that's not even a cancer center accredited program and ranks 24.7% out of 100 survival rating. 

Let's put it this way.... when the head of the Cancer program locally calls you and says he's going to call you back and doesn't for two days?... Need I say more?

Confidence in your team is paramount in beating this beast. You want a group of doctors who are on the same page and are looking out for your best interests and quality of life. Get that second opinion, ask questions and don't settle. It's your life we're talking about!

"T"

 

HobbsDoggy
Posts: 165
Joined: Feb 2013

I also got a second opinion at the Cleveland Clinic and was very happy I did that. I was not able to get all my treatment there, wish I would have, due to pressing family matters, but it was a great help in being my own advocate locally. The local doctors, etc, were fine but they did not coordinate well and they did not share much information. I had to use what I learned at the Clinic to press some issues.

I am going back to the Clinic for some follow up and if nothing else to make myself feel better. Cannot say enough about the need to coordinate the doctors and to press them. The doctors here are very good but still have a little of don't question me attitude and we don't share information.

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