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Went for consultations today

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009
Today at 9:31 PM
My first consultation was with the thoracic surgeon.  My lymph node is too big to do the surgery with a scope.  He said the node could be removed that way.  The two surgery options he gave me was one a thoracotomy.  He would make an incision on my right side and go through the ribs to remove the lymph node.  The second option was to go through the breast bone and remove the node that way.  I did not like either option.   Both would be major surgery, and I do not want that. 
 
I was surprised when the surgeon said Yes the node can be removed but with UPSC is that the best thing.  He said he could remove the enlarged node, and any other nodes in the area, but what about the nodes that have enlarged in the abdomen other times. 
 
The second consultation was with the radiation onocologist.   Instead of calling it cyber knife, he called it SBRT - stereotactic body radiation therapy.  It is a high dose targeted radiation.  He said it would take 10 treatments to treat the area.  He said he used to do the same thing in 3 - 5 treatments and people had more side effects, so he gives the same amount of radiation, but in 10 treatments, and he expects minimal side effects.  I would rather have more treatments and less side effects.  He said if I had the surgery the lymph node would be 100% removed, but with radiation treatment it would be 90% removed.  The treatments will last about 40 minutes, and it will be Mon - Fri.
 
So I will go back September 9th to have a mold made, so I stay in the same position for each treatment.  It takes about 8 days to get the mold made.  After that I will start the treatments.   
 
There will not be an immediate response to the treatment.  He said it may be 3 to 6 months before the lymph node begins to shrink because my node has been slow growing.  The doctor has been doing this type of radiation treatment for 10 years, so I feel very confident in him.
 
Both the surgeon and the radiation onocologist said it was unusual for UPSC to go to the mediastinal area, but my lymph nodes have always been enlarged in that area when the lymph nodes begin to enlarge.  They both asked if I ever had the node biopsied, and I said "no".  I told him the node always shrinks when I have chemo.
 
I asked if Medicare covered the treatment.  He said usually, but they will probably question why the treatment is being done when I have UPSC.  He said he would have to do some further explaining, but everything would be clear before I start treatment.  He said this type of treatment was usually used for lung cancer.
 
I have been concerned that the node is "anterior to the trachea".  The surgeon showed me the scan and said there is area between the node and the trachea.  The radiation onocologist said some of the radiation will go to the trachea, but should not be a problem.
 
So this is the latest.  Thanks for your prayers. 
 
 
 
debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

That is a lot of information to digest Ro!  I only question the 90% shrinkage of the node with so much cyberknife or what ever.  Don't understand that at all.  If I remember correctly, the cyber knife was the new wonder tool that could go in and take out more of the tumor than the traditional surgery, correct me if I'm wrong.  Will he be able at all to biospy the node to see if it's UPSC or a different primary?  Hoping all goes according to plan and that you are comfortable with such a big step.  Prayers for you my dear!  Best, Debrajo

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

No a biopsy cannot be taken with the radiation treatment.  Even though they call it cyber knife there is no cutting, it is all radiation beams to a targeted area.  They are hoping that with getting rid of the largest node my CA-125 will reduce.  I did not ask, but i bet initially it will rise more due to inflammation from the radiation.  I will ask that later.  

The radiation attacks the DNA of the cancer cells, so the cells cannot replicate.  The cells will eventually die.

I am comfortable with my decision to do the SBRT.  That is what I was hoping to do.  I was hoping for only 3-5 treatments, but I can do the 10, especially if it has less side effects.   It's less than the 28 treatments I had for initial treatment In the pelvic area.   Thanks again for the prayers.

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

this seems to be good news but, as usual, leads to more questions And decision making.  Nothing is cut and dried, is it?  I wonder if it would be good to talk with folks on the lung board?  We know there's nothing like talking to the people who have been there, done that.

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

I often wonder whether docs want us to be smart enough to understand what they're telling us or whether they would prefer we either weren't so smart and/or didn't want to know what was going on with us.  Since I've been volunteering, I've encountered peeps who want to know everything and question everything and those who just want to get through it and do what the doctor advises.  You certainly seem to have a good understanding of your options and can make decisions based on what it best for you.  But boy howdy, you sure have lots of information to sort through, don't you? 

Wishing you the best treatments possible for you as usual.  Sending lots of positive hopes and prayers your way.

Suzanne

 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

If they can only remove 90%, can they repeat the treatment in the future, if need be?

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I did not ask but usually if you have radiation in an area, you cannot have it there again.  I'll ask that when I go back.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am a retired RN, so I usually know what the doctors are talking about.  Sometimes I know more information than they want me to know.  I always research on the Internet if I don't fully understand what they talk about.

i was hoping for the cyber knife,so I am comfortable making the decision for the SBRT.  I am hoping by doing this it will delay when I have to go back on chemo because I know that is in the future for me

Thanks for your thoughts.  Hope you are doing well.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2616
Joined: Mar 2013

Ro, so happy you got online to post the outcome of the meetings.  I know I have been thinking about you all day.  As the other ladies have said, lots of information which is what you need to make the best decision for you.  Friday was just an overwhelming day of information and now it is time to digest it all.  You continue to be in my prayers.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Thanks for the thoughts and prayers.  I already made the decision to do the SBRT.  It was what I was hoping for, and I definitely did not like the surgery options.  I was not crazy about the slit in my throat to get the node that way, and I definitely did not like the other two surgery options.  Way too much pain involved in those!  Because I am a retired nurse I know what was involved in those surgeries.  I want to keep my quality of life.  gardening is my passion, and those surgeries would definitely curtail that.  

Hope you continue to do well.

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Hi Ro:

Thanks for letting us know.  Wow.    Since everone else had asked the questions I would have asked, I am just continuing to send my prayers to you.   I understand your position and how you like gardening and how if you had surgery, you would not be able to to that.   My best to you in getting everything covered with Medicare.

((Hugs))

Kathy

Sisters three
Posts: 165
Joined: Nov 2012

It was a Godsend to one of my family members. She had several treatments also. Goodluck and I will continue with the prayers!

I also love to garden and can't imagine my wellbeing if it was taken away from me. 

Lisa

 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Ro, I have been in Miami with my brother and a close friend the last two days helping my nephew with house repairs; he and his wife purchased a promising home in a short sale and it needs work . While I was sanding and painting, you were nor far from my thoughts.  I am so glad that you can have the cyber knife and that the side effects will be minimal. It is not often easy to choose among several TX options, but your training as a nurse puts you ahead of the curve in this matter. I wish you God speed and a positive outcome, my friend. You have a fan club here and we are rooting for you!

Warm Wishes,

Cathy

 

 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Thanks for your thoughts and kind words.  I appreciate having a fan club, but I am sorry any of you are members of this club!  Hope you are enjoying Miami and it is not all work.  

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I too hope for good outcome from the cyber knife.  May you continue to enjoy your garden.  Hope you are having a good holiday weekend. 

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