Interesting doctor's appointment today

Ro10

I had my lab and CAT scan last week.  Today the doctor gave me the results.  My CA 125 went from 1441 to 1582.  That is not too big of a rise for me in 8 weeks.  My CAT scan showed only one lymph node in the right mediastinal area near the trachea  that had grown from 2.8 X 2.2cm to 4.1 X 3.6cm.   And that was the only lymph node that was mentioned.  Usually I have 4 more lymph nodes listed as enlarged.  The doctor thought this was very positive.  I did too since this was compared to a year ago and the node only grew about 1/2 inch by 1/2 inch.

The CAT scan also listed the term of shotty lymph nodes.  I never had that on the results before.  The doctor said these are normal lymph nodes. 

He used the term oligometasasis.  A term I have never heard before.  He said it means small or few metastasis.  He is recommending that I go to to Barnes Siteman Cancer Center to see a radiation onocologist and a thorasic surgeon to see if the node can either be removed surgically or reduced with cyber knife radiation.   The surgical procedure is called a mediastinoscopy where an incision is made in the neck and then using a scope the node is removed.  He is sending my scan and records to the doctors and see if any of this is possible.  It will depend on where the node is located.  Neither of these procedures are done here in Quincy.

We have asked about cyber knife radiation before, but were told there were too many areas to radiate previously.  the doctor said the cyber knife radiation is only  2 0r 3 treatments versus traditional radiation which is every day for several weeks. 

The doctor thought if the node was reduced or removed my CA 125 would probably go down.  He feels that the Aromasin I am currently taking is controlling the other lymph nodes.  He said this procedure could improve not only the quality of life, but also the quantity of life.  I feel my quality of life has been very good.  Our trip to Norway was wonderful with so many beautiful and interesting sites.  There were so many waterfalls, snow capped mountains and beautiful granite cliffs.

I feel blessed that it's been 26 months since my last chemo, and 5 1/2 years since diagnosis of UPSC Stage 3-C.   I know I will need chemo again, but the longer I can put it off, the better for my body.  It will be several weeks before I hear from St. Louis.  If I get a choice between surgery or cyber knife, I will choose cyber knife.  It is much less invasive, but I will have to cross that bridge when the time comes. 

As always I have no symptoms, so if neither of these procedures are possible we will continue to monitor and observe.  In the meantime I am enjoying each day.  You all remain in my prayers, no matter what stage of your journey you are in.  I pray for you and your caregivers.  They have as difficult time as we do.  So be positive and find some joy in each day.  In peace and caring.

Double Whammy

Welcome home, Ro!

Sounds like you have a memorable trip to Norway.

Your doctor visits continue to amaze me.  You and your quality and quantity of life must be so rewarding to your oncologists.  I often recall an initial visit to my breast oncologist and I so naively said to her "it must be really hard to have your job".  Her response to me was, "no, I get to cure people"!  I never gave much thought to positive outcomes that oncologists have, but there defiitely are some, aren't there? 

I hope one of the alternatives to chemo works out for you. 

Suzanne

 

NoTimeForCancer

I'm with Suzanne.  You are

I'm with Suzanne.  You are amazing Ro and it is so good for the other women here to hear how well you are doing. 

Thank you, as always, for sharing.

HellieC

So pleased for you, Ro

I'm so pleased for you, Ro, on so many fronts. 

Firstly, because you had a wonderful holiday - Norway and the fjords are on my list and I will get there at some point! 

But, mainly, of course, because of the good appt you just had.  Tumour markers only rising gently, some nodes appearing to have gone back to normal and one node that, although it has grown, looks like it might be treatable by surgery or Cyberknife.  It really does sound like the Aromasin is buying both quality and quantity for you, which is brilliant. And that fact that you continue to have no symptoms is great. 

I am waiting for Cyberknife treatment for the mass in my pelvis.  It has grown slightly in the last three months (from 3.8 to 4.1 cms) so I am now on Tamoxifen, as the Letrozole stopped working and when I tried progesterone it didn't have any effect at all.  In the UK, Cyberknife is not usually funded by our National Health Service, so I am awaiting the answer to an individual funding request, as it appears that I am exceptional in that I have just the one site of recurrence, no organ or lymph node involvement etc. so there is just a tiny chance that they may put up the money.  But if/when the funding is refused, then I will go ahead and pay for the treatment myself (about the price of a family saloon car!).  So I should know the dates for treatment in the next few weeks.  We must compare notes!

With kindest wishes
Helen x

Abbycat2

Thanks for sharing, Ro!

I am glad that you had a wonderful trip to Norway and that you continue to be blessed with no symptoms.  I am only 4 months out from treatment and I hope I can do as well as you have done. You have been an inspiration to me and I admire your positive approach to life and your unwillingness to allow UPSC to define you. If you are a good candidate for it, I think the cyber knife is the way to go. Is the Barnes Siteman Cancer Center in St. Louis? I have not heard that name before. Know that I pray for success in your treatment!

Warm Wishes,

Cathy

Ro10

HellieC said:

So pleased for you, Ro

I'm so pleased for you, Ro, on so many fronts. 

Firstly, because you had a wonderful holiday - Norway and the fjords are on my list and I will get there at some point! 

But, mainly, of course, because of the good appt you just had.  Tumour markers only rising gently, some nodes appearing to have gone back to normal and one node that, although it has grown, looks like it might be treatable by surgery or Cyberknife.  It really does sound like the Aromasin is buying both quality and quantity for you, which is brilliant. And that fact that you continue to have no symptoms is great. 

I am waiting for Cyberknife treatment for the mass in my pelvis.  It has grown slightly in the last three months (from 3.8 to 4.1 cms) so I am now on Tamoxifen, as the Letrozole stopped working and when I tried progesterone it didn't have any effect at all.  In the UK, Cyberknife is not usually funded by our National Health Service, so I am awaiting the answer to an individual funding request, as it appears that I am exceptional in that I have just the one site of recurrence, no organ or lymph node involvement etc. so there is just a tiny chance that they may put up the money.  But if/when the funding is refused, then I will go ahead and pay for the treatment myself (about the price of a family saloon car!).  So I should know the dates for treatment in the next few weeks.  We must compare notes!

With kindest wishes
Helen x

Helen

I hope you get positive results for getting approval for the cyber knife radiation.  I've heard successful stories about the cyber knife.  I hope it is approved for you.  It would be great for your pelvic mass to be smaller Or totally gone.  I hope you get an answer soon.  I hope you do not have to pay for it.

I hope you get to take the trip to Norway, too.  It's great to have dreams, and then to follow those dreams.  

it will be interesting which of us hears the news about the cyber knife first. in peace and caring.

Kaleena

Hi Ro!

Hi Ro:

I did respond to your post the day you posted it but for some reason my reply did post.  It might have been because I was out of town and tried to send it from my cell phone.   

Anyway, I am so glad you had a great trip to Norway.   You are amazing, Ro.   I just love your postive and caring attitude.  I am so happy you have no symptoms and continue to enjoy life.  

My best to you.

Kathy

(P.S.  I did have more to say, but I am brain fog today)