Daughter seeking answers/advice - Mom diagnosed with stage III in October

noreeb
noreeb Member Posts: 7
edited February 2013 in Esophageal Cancer #1

Kind of a long post, so to summarize, my questions are:

 

  • What makes someone a candidate for surgery? My Mom is still very underweight (under 100 lbs at 5’6), has little to no energy, and when was diagnosed had an ~3 in long tumor almost completely occluding her esophagus (which we’re obviously hoping has shrunk now). Her blood pressure is also really really low. 

 

  • She is almost a month out from ending chemo and radiation, but still has pain with swallowing (and is therefore unable to eat or drink). We thought that because the treatments were aimed at shrinking the tumor, that post treatment, she would have experienced at least a small amount of improvement. Is this an indication that her tumor has not shrank?

 

  • Are there any symptoms that would indicate mets to other organs? I know that we’re just going to have to wait for scan results, but my over active brain wants to know if there are any objective symptoms I would be able to see. 

 

 

My Moms Story:

 

My Mom, who had her 52nd birthday this February, was diagnosed with stage III esophageal cancer (adenocarcinoma) a few months ago. A large occluding tumor ~3 in. in length, was found in the lower 1/3 of her esophagus (they couldn’t even fit a normal scope past it, and had to use an infant scope), with possible involvement of 1 or 2 lymph nodes. At the time of diagnosis, she was severely underweight, and a few weeks later when she was finally getting a feeding tube she weighed in at a measly 91 pounds (she is 5ft 6in tall). She had 6 weeks of radiation therapy, and two rounds of chemotherapy. The second round hit her hard, and she unfortunately lost all of the weight she had gained over the past weeks, and was back down to 91 pounds. 

 

It’s been three weeks since treatments had ended, and she still feels quite lousy. Her stomach is always “sour”, even while taking three different antiemetic meds, and she produces a significant amount of thick mucous. Sometimes there is so much mucous, that it literally just, for lack of better words, spews out of her. She is very fatigued as well, but is only able to sleep for a maximum of 2 hours at a time. And swallowing anything, even water, is painful and basically impossible. 

 

We have an appointment on Feb 25th to check in with her chemotherapist, and then we’ll have a PET scan to see if she is eligible for surgery. No one has really told us what exactly needs to happen to make her eligible for surgery, which is frustrating to say the least. So she’s just been focusing on gaining weight and getting a lot of rest. 

 

Although we have all been in pretty good spirits through this whole ordeal, it is getting harder to maintain positivity. We expected for her to start to feel a little better post chemo and radiation, and thats just not happening. My brain is starting to over analyze everything, and I’m starting to question whether or not she’ll even be able to have the surgery. Without the surgery, the chances of her surviving for any significant amount of time is obviously non existent. This is really the first time that I’m facing the realization that my Mom is dying. I am afraid that her will to fight this thing is also waining. Every day she says to me that she is just so tired of being sick.

 

Does anyone have any advise about this situation? Has anyone had a loved one go through treatment, and not be eligible for surgery? Is it “normal” to experience zero improvement post chemo and radiation? 

 

I am really looking for honesty, and although encouraging words are welcome, I know that the reality of this situation is lousy. So please, if you can share any information or experiences with me, even if they didn’t turn out well, know that it is very much appreciated. 

Comments

  • Rickyr1219
    Rickyr1219 Member Posts: 53
    #2
    I'm no Doctor but here's my experience

    I was diagnosed as Stage III Cancer at the EC Junction.  Mine Cancer was staged as T3N1Mo.  This means mine was through several layers of the esophagus,  I had a lymph node involed and it had not metastisied to other organs.  I've included a link that explains the staging.  If your mom is Stage 3 she also should have had the cancer staged.

    http://www.cancer.net/cancer-types/esophageal-cancer/staging

    Some doctors will install a feeding tube for people that can't maintain their weight. Common is a "J-Tube" that goes into the small intestine bypassing the throat and stomach.  I had combined Chemo and Radiation and after a couple of weeks of this I could hardly eat anything.  I drank alot of ice cream shakes,  Boosts. and Ensure Drinks.  They also prescribed a Lydocane and antacid cocktail that I could swish around and swallow that helped with the pain of eating/drinking.  The radiation kept my esophagus so sore that I can relate to that part of what your mom is going through.  It actually stayed that way for a couple of weeks after my last radiation treatment before I could start really eating anything again.

    I'm not sure of all the things that would prevent someone from having surgery.  Cancer wise I commonly hear them say stage IV or if the cancer has metastisisied to other organs that they may not do surgery.

    If you are worrying too much about all this then talk to the Oncologist/Radiologist.  Write down questions to ask like what stage? would a feeding tube help? What is preventing surgery?  Is her heart, Lungs etc an issue?  Has the treatment reduced the tumor size?  And then don't hesitate to get a 2nd or even 3rd opinion.  Not sure what area you are from but look for the Hospitals and Cancer Centers that treat lots of cases like MAYO, John Hopkins, MD Anderson.

    Finally,  read throught the posts on this site..  There are very knowledgeable people on here that have made posts that were similar to what my disgnosis was and I really learned alot from them.  Bottom line is don't give up the fight.  There is hope..  We are each a Statistic on 1 and your mom may very well be that 1 that does better than others...

     

     

  • noreeb
    noreeb Member Posts: 7
    #3
    Rickyr1219 said:

    I'm no Doctor but here's my experience

    I was diagnosed as Stage III Cancer at the EC Junction.  Mine Cancer was staged as T3N1Mo.  This means mine was through several layers of the esophagus,  I had a lymph node involed and it had not metastisied to other organs.  I've included a link that explains the staging.  If your mom is Stage 3 she also should have had the cancer staged.

    http://www.cancer.net/cancer-types/esophageal-cancer/staging

    Some doctors will install a feeding tube for people that can't maintain their weight. Common is a "J-Tube" that goes into the small intestine bypassing the throat and stomach.  I had combined Chemo and Radiation and after a couple of weeks of this I could hardly eat anything.  I drank alot of ice cream shakes,  Boosts. and Ensure Drinks.  They also prescribed a Lydocane and antacid cocktail that I could swish around and swallow that helped with the pain of eating/drinking.  The radiation kept my esophagus so sore that I can relate to that part of what your mom is going through.  It actually stayed that way for a couple of weeks after my last radiation treatment before I could start really eating anything again.

    I'm not sure of all the things that would prevent someone from having surgery.  Cancer wise I commonly hear them say stage IV or if the cancer has metastisisied to other organs that they may not do surgery.

    If you are worrying too much about all this then talk to the Oncologist/Radiologist.  Write down questions to ask like what stage? would a feeding tube help? What is preventing surgery?  Is her heart, Lungs etc an issue?  Has the treatment reduced the tumor size?  And then don't hesitate to get a 2nd or even 3rd opinion.  Not sure what area you are from but look for the Hospitals and Cancer Centers that treat lots of cases like MAYO, John Hopkins, MD Anderson.

    Finally,  read throught the posts on this site..  There are very knowledgeable people on here that have made posts that were similar to what my disgnosis was and I really learned alot from them.  Bottom line is don't give up the fight.  There is hope..  We are each a Statistic on 1 and your mom may very well be that 1 that does better than others...

     

     

    Thank you for your

    Thank you for your information, and words of encouragement. Getting a J-tube was actually the first thing that happened after her diagnosis. It has helped her weight stabilize somewhat, but we have unfortunately not seen any significant gain yet. 

     

    She actually has that numbing mouthwash stuff, but it was unable to provide enough relief to make eating or drinking possible, which is a bummer. 

     

    You are clearly a very strong person, and I wish you luck in your fight agains this beast of a cancer!

  • Dad'sfight
    Dad'sfight Member Posts: 155
    #4
    noreeb said:

    Thank you for your

    Thank you for your information, and words of encouragement. Getting a J-tube was actually the first thing that happened after her diagnosis. It has helped her weight stabilize somewhat, but we have unfortunately not seen any significant gain yet. 

     

    She actually has that numbing mouthwash stuff, but it was unable to provide enough relief to make eating or drinking possible, which is a bummer. 

     

    You are clearly a very strong person, and I wish you luck in your fight agains this beast of a cancer!

    My dad too is stage 3

    My father was also dx Stage 3 in September.  His also spread to several lymphnodes but not to any other organs.  The chemo/radiation was really tough but he did get through it. His last radiation was 2nd week in Jan. and he's still not feeling well. I've been told that's normal.  He is very fatigued, stay's in bed most of the day. However, I did noticed some improvement yesterday because he actually sat in his recliner and had a conversation with me before taking another nap.  The mucos was horrible, what I did for my father was make sure he was sleeping elevated(I bought the pillow at walmart) that really helped. I also was told by the doctor to get a humidifier and my dad said that helped relieve some throat irriation and seemed to soften the mucos. He would puke the mucos up because there was so much, but that has finally stopped.  Unfortantly, they are saying he is not a canidate for the surgery which makes me feel very anxious.  I too realized that without he will probably not live long.  This whole EC experience has been very hard on my father, he has lost 115 pounds because he had a bad infection with the j-tube and they had to remove it.  So he has to eat and drink regardless of pain for nutrition.  Milk shakes are good, I even mix in the j-tube formula since it has no flaver but a lot of nutrition.  He did try the lidocaine with mylanta mixure but it would make him vomit.  He is scheduled for surgery tommorrow they are doing scope with another biopsy so I hope we're told the tumor is gone. I have done a lot of reading and since my dad can't have surgery maybe esphogas resection is an option.  He too is having a pet scan this week and we'll get the results next week, I pray we're told its clear.  His radiation oncologist is wonderful, I too have been over analyzing everything but I feel like I have to figure something out to keep him around. I have seen stories where people didn't have the surgery and the chemo/radiation alone worked or had surgery and it still came back. I don't know what this will bring but I'm trying to make peace with it and give it to god. It's hard for me because I usually control everything, seeing my father suffer has been a devasting thing for me and the family.  I'll be praying for you and your mom.

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