Reacurrance of carnoid cancer

dbask

 I had a right lung lobectomy to remove a Carconiod Tumor in August of 2018. I just found out last week that I still have the cancer somewhere.  The Oncologist thinks maybe that part of the tumor was left behind in the lung.  I go in to have a CT Scan in two weeks to see if we can find out where it is. 

Have any if you had a recurrance of your tumor after surgery?

  I'm not sure when or what to tell my family about these results?  They are in another state and they feel bad enough not being around when I had the Lobectomy.  

I'm in need of some advice on how to handle this.  My husband just says don't worry, but thats not as easy as he makes it out to be.  

Thanks for any advice. 

Wilma224

When to tell family

 Thanks for the reply to  my thread. How was the remaining tumor discovered?  is your appointment in 2 weeks a followup CT scan?

 My sister was treated for appendix cancer last year (who knew there was such a thing as appendix cancer)  It was a big scare for our family since she was the first in our immediate family to have cancer.  Everyone was so worried  most live out of town and could not offer much support.  She was very private about her situation except with me since she stayed with me during her treatment.  She did not want to have long conversations so she kept the circle pretty small for most of her journey. Good news is she was NED at six months and has her follow up in two weeks so I plan to tell her my news first when she is here.  

It worries me that I have no indication regarding size or density etc. will find out tomorrow. Hopefully the fact I have no symptoms is a good sign. And having this discussion board while waiting really helps  

 

dbask

Wilma224 said:

When to tell family

 Thanks for the reply to  my thread. How was the remaining tumor discovered?  is your appointment in 2 weeks a followup CT scan?

 My sister was treated for appendix cancer last year (who knew there was such a thing as appendix cancer)  It was a big scare for our family since she was the first in our immediate family to have cancer.  Everyone was so worried  most live out of town and could not offer much support.  She was very private about her situation except with me since she stayed with me during her treatment.  She did not want to have long conversations so she kept the circle pretty small for most of her journey. Good news is she was NED at six months and has her follow up in two weeks so I plan to tell her my news first when she is here.  

It worries me that I have no indication regarding size or density etc. will find out tomorrow. Hopefully the fact I have no symptoms is a good sign. And having this discussion board while waiting really helps  

 

Telling

I hope all go great and it is nothing but good news.  I'm going to find out in 2 months.  That's when I have my next appointment with the Oncologist.  It's going to be  long few months.

 

Wilma224

dbask said:

Telling

I hope all go great and it is nothing but good news.  I'm going to find out in 2 months.  That's when I have my next appointment with the Oncologist.  It's going to be  long few months.

 

Waiting

No bad news today but they want to follow up in 3 months. No mass detected larger than 1 cm. I hope you stay strong and feel well until you get the news. 

dbask

Wilma224 said:

When to tell family

 Thanks for the reply to  my thread. How was the remaining tumor discovered?  is your appointment in 2 weeks a followup CT scan?

 My sister was treated for appendix cancer last year (who knew there was such a thing as appendix cancer)  It was a big scare for our family since she was the first in our immediate family to have cancer.  Everyone was so worried  most live out of town and could not offer much support.  She was very private about her situation except with me since she stayed with me during her treatment.  She did not want to have long conversations so she kept the circle pretty small for most of her journey. Good news is she was NED at six months and has her follow up in two weeks so I plan to tell her my news first when she is here.  

It worries me that I have no indication regarding size or density etc. will find out tomorrow. Hopefully the fact I have no symptoms is a good sign. And having this discussion board while waiting really helps  

 

thanks for responding

You know my blood work says that I still have a Carconiod Tumor somewhere.  My CT Scan ;in two weeks will either say where it is or show that it is somewhere that the scan is not prresent.  It is i the lungs,stomach,ll and prlvic so hopefully it will show where it is.  I don't have another appointment with the Oncologist till April 10th so it is going to ber a long wait.  

Wish me luck.

Wilma224

dbask said:

thanks for responding

You know my blood work says that I still have a Carconiod Tumor somewhere.  My CT Scan ;in two weeks will either say where it is or show that it is somewhere that the scan is not prresent.  It is i the lungs,stomach,ll and prlvic so hopefully it will show where it is.  I don't have another appointment with the Oncologist till April 10th so it is going to ber a long wait.  

Wish me luck.

Best of luck

and keep us posted. 

zorraaz

dbask said:

thanks for responding

You know my blood work says that I still have a Carconiod Tumor somewhere.  My CT Scan ;in two weeks will either say where it is or show that it is somewhere that the scan is not prresent.  It is i the lungs,stomach,ll and prlvic so hopefully it will show where it is.  I don't have another appointment with the Oncologist till April 10th so it is going to ber a long wait.  

Wish me luck.

How's it going, dbask?  Waiting for tests, and then results, is nerve-wracking, I know.  My lobectomy was performed in October 2018, and surgeons claimed "they got it all, no further treatment necessary."  Three months later, my CT scan showed more new nodules in the same lung.  I've already had the blood work;  CgA is elevated.  Now I'm waiting for a biopsy and worrying that it will show a malignancy.

Has anyone else experienced the return of a carcinoid tumor so soon after surgery?  The surgeon said he's never seen it happen before.  ???

Best of luck in your journey, dbask.  Keep posting follow-ups.