Told Dad had response to Radiation/Chemo

Dad'sfight
Dad'sfight Member Posts: 155
in Esophageal Cancer #1

We were told that dad had response to chemo/radiation.  All the biopsies came back negative and the Pet Scan showed that the lymphnodes responded. However, when I read the pet scan results he has a lot of uptake with SUV numbers. When I asked the doctor she said that it's from inflammation.  His last radiation tx was 1-10-13, and pet scan was done 2/22  so she said that it was actually early to be doing pet scan but they were impressed he responded. I want to celebrate the response but I'm having a hard time doing so because I'm doubting the response now since the pet scan was done early. I am grateful that he did  show a response because it got us some "bonus time".  I did speak with her at length about dad having the surgery and she said that right now he isn't well enough.  She wants us to try and get him eating 2,000 calories daily for the next 2 weeks and then return to her to re-visit the surgery idea. I told her I was already getting my second opinions about it and she said that she is also going to call a close friend of hers that is thoriacic surgeon for second opinion.

Surgery is completely up to dad, but they were saying that if it comes back in a different area its automatic stage 4 or if same region it's a re-occurence and treatment options are limited. Then theres a chance even with surgery it could come back.  This IS HORRIBLE.  Right now my father is scared to do the surgery and told me last night he's not ready to die either.  I don't know what to do. The outcomes they gave us yesterday isn't good.

Comments

  • paul61
    paul61 Member Posts: 1,391 Member
    #2
    The results sound promising

    It sounds like the results of your Dad’s tests are positive. It is typical for PET scans done shortly after radiation therapy to show significant uptake due to inflammation. It sounds like your oncologist wants to assess your Dad’s overall physical condition after he has had some time to recover from chemotherapy and radiation therapy.

    The chance or recurrence is something all cancer survivors live with. And yes, treatment for recurrence is not particularly successful but we are all a statistic of one and your Dad has done well so far.

    Esophageal surgery is certainly a challenging surgery; but many of us have survived the surgery, and recovered. There are some very good surgeons out there. It is very important that you get an opinion from a surgeon who does many esophagectomies each year. Not a general thoracic surgeon, but one who specializes in esophagectomy surgery.  Depending on where you live we can suggest some centers of excellence for this kind of surgery. If you Dad would like to speak to someone who has had an esophagectomy I would be happy to speak with him.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

     

  • Rickyr1219
    Rickyr1219 Member Posts: 53
    #3
    Was told 12 weeks after for PET

    After my radiation/chemo treatment the radiation oncologist hasd ordered a PET scan and was denied by my insurance.  Reason they gave was PET scan done within 12 weeks of radiation were judged to be inaccurate.  I had planned all along to have the esophogectomy after my treatments and my thoracic surgeon said he really didn't need a PET scan so I never had one post treatment.

    I too questioned if I should have the surgery or not and the surgeon said I could change my mind and stop the procedure at anytime up until they put me to sleep.  Post surgery there were days I wished  I had just stuck with the radiation /chemo and bypassed the surgery but now being 3 months post op I am glad I took that additional step to win the battle.  Paul is right and has way more experience than I do but I think the key to success is having a surgeon that specializes in esophogectomies.  I even asked how many patients my surgeon had lost during operations and I was fortunate in that he had never lost a patient during surgery. 

    Sounds like your dad is doing the right things.  It took a couple of weeks or so after my radiation and chemo to start eating and feeling good again.  I think feeling so well after a couple of weeks played into my questioning the surgery.  I was told that if mine came back that I could not be radiated again.

    Get your 2nd opinions and 3rd and 4th if that gives you the assurances you need to make a decision.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #4
    Dad

    When my husband was first diagnosed with laryngeal cancer, they did a follow up PET/CT only 6 weeks after treatment was done.  It showed clear but 6 weeks later he was having majority difficulty and another PET/CT showed that the cancer was still there and might have been reduced by treatment but not gone.  When we saw a specialist he said that the PET/CT was wrong that the cancer was still there only hidden by inflammation.  He then had surgery.

    One year later when having a procedure done, they found a tumor at the cervical of his esophagus which is a rare place for cancer.  He underwent another round of radiation and chemo and finished 7/2/12 and had a PET/CT 9/18/12 and a dilation procedure in October.  We were told he was NED.  Surgery was ruled out because of previous treatment and they thought they could get it by radiation and chemo.  In late January he had a follow up PET/CT scan which showed a spot in his lung (needle biopsy due to location) which was found to be cancer, and a recurrence in the cervical of the esophagus and further down.  Doctor tried to do a biopsy of his esophagus but due to the fact that my husband's throat was closed off he didn't see the tumor until he actually was in it.  Surgery is not an option this time due to the spread. 

    What I'm trying to say is that we were told by the specialist that this surgery was very hard on the patient and due to previous radiation and surgery it would be even harder for my husband.  We are seeing the oncologist on Wednesday to see what type of chemo is available, the side effects, will it help or only buy time.  It is hard right now, I would prefer quality or quantity, but whatever my husband decides is what we will do. 

    The decision is your father's, and like I've told our grown sons, it is their father's decision, not mine, not theirs.  I don't want to help him choose because if it only buys time and is not good time, I don't want to regret it down the line and I don't want to be responsible for hastening his time.  Let your father decide, as hard as it will be and remember everyone responds differently to radiation, chemo and surgery. 

    Sharon

  • Dad'sfight
    Dad'sfight Member Posts: 155
    #5
    paul61 said:

    The results sound promising

    It sounds like the results of your Dad’s tests are positive. It is typical for PET scans done shortly after radiation therapy to show significant uptake due to inflammation. It sounds like your oncologist wants to assess your Dad’s overall physical condition after he has had some time to recover from chemotherapy and radiation therapy.

    The chance or recurrence is something all cancer survivors live with. And yes, treatment for recurrence is not particularly successful but we are all a statistic of one and your Dad has done well so far.

    Esophageal surgery is certainly a challenging surgery; but many of us have survived the surgery, and recovered. There are some very good surgeons out there. It is very important that you get an opinion from a surgeon who does many esophagectomies each year. Not a general thoracic surgeon, but one who specializes in esophagectomy surgery.  Depending on where you live we can suggest some centers of excellence for this kind of surgery. If you Dad would like to speak to someone who has had an esophagectomy I would be happy to speak with him.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

     

    Paul,
    My father has decided

    Paul,

    My father has decided that if he does the surgery he wants it done in phoenix, where we live. He doesn't want to travel anywhere because he's afraid of finding someone to take care of him if he has complications, especially if they didn't do the surgery to begin with. Have you heard of any great places in Phoenix?

    I think my father will definently take you up on the offer to speak with him.  I think it will do him some good to speak with someone who has battled EC and survived.  I want to thank you so much for your responses. You've truely helped us during this process of confusion. If you want to email me your number, and is there a time you would prefer to speak with Dad?  justinah38@gmail.com

    Our f/u apt. with the surgeon and oncologist is 3/20/13, it's almost like we have to convince them to do the surgery.

  • Dad'sfight
    Dad'sfight Member Posts: 155
    #6
    Rickyr1219 said:

    Was told 12 weeks after for PET

    After my radiation/chemo treatment the radiation oncologist hasd ordered a PET scan and was denied by my insurance.  Reason they gave was PET scan done within 12 weeks of radiation were judged to be inaccurate.  I had planned all along to have the esophogectomy after my treatments and my thoracic surgeon said he really didn't need a PET scan so I never had one post treatment.

    I too questioned if I should have the surgery or not and the surgeon said I could change my mind and stop the procedure at anytime up until they put me to sleep.  Post surgery there were days I wished  I had just stuck with the radiation /chemo and bypassed the surgery but now being 3 months post op I am glad I took that additional step to win the battle.  Paul is right and has way more experience than I do but I think the key to success is having a surgeon that specializes in esophogectomies.  I even asked how many patients my surgeon had lost during operations and I was fortunate in that he had never lost a patient during surgery. 

    Sounds like your dad is doing the right things.  It took a couple of weeks or so after my radiation and chemo to start eating and feeling good again.  I think feeling so well after a couple of weeks played into my questioning the surgery.  I was told that if mine came back that I could not be radiated again.

    Get your 2nd opinions and 3rd and 4th if that gives you the assurances you need to make a decision.

    Ricky,
    I'm so glad to hear

    Ricky,

    I'm so glad to hear your feeling better. Your suggestion about asking the surgeon his outcomes is a great idea, I definenlty will be doing that. I to worry that my father will have the same regrets you did after surgery, but reading this gives me hope that those feelings will too pass awhile after surgery like yours did. Dad said yesterday that he feels strongly towards having the surgery because he would rather die while under anesthia and not no it, or die quickly from the complications vs. not having surgery and knowing that he will suffer. That was yesterday, I'll have to wait and see what he feels today. I will say in the past 2 days I've noticed that he is sitting outside with me and eating more, so that's encouraging.

    I'm touched everyday when I get on here to see people like yourself and Paul that have had your struggles but still take the time to read and respond to help people like me that is just trying to figure it all out. THANK YOU

  • Dad'sfight
    Dad'sfight Member Posts: 155
    #7
    Ladylacy said:

    Dad

    When my husband was first diagnosed with laryngeal cancer, they did a follow up PET/CT only 6 weeks after treatment was done.  It showed clear but 6 weeks later he was having majority difficulty and another PET/CT showed that the cancer was still there and might have been reduced by treatment but not gone.  When we saw a specialist he said that the PET/CT was wrong that the cancer was still there only hidden by inflammation.  He then had surgery.

    One year later when having a procedure done, they found a tumor at the cervical of his esophagus which is a rare place for cancer.  He underwent another round of radiation and chemo and finished 7/2/12 and had a PET/CT 9/18/12 and a dilation procedure in October.  We were told he was NED.  Surgery was ruled out because of previous treatment and they thought they could get it by radiation and chemo.  In late January he had a follow up PET/CT scan which showed a spot in his lung (needle biopsy due to location) which was found to be cancer, and a recurrence in the cervical of the esophagus and further down.  Doctor tried to do a biopsy of his esophagus but due to the fact that my husband's throat was closed off he didn't see the tumor until he actually was in it.  Surgery is not an option this time due to the spread. 

    What I'm trying to say is that we were told by the specialist that this surgery was very hard on the patient and due to previous radiation and surgery it would be even harder for my husband.  We are seeing the oncologist on Wednesday to see what type of chemo is available, the side effects, will it help or only buy time.  It is hard right now, I would prefer quality or quantity, but whatever my husband decides is what we will do. 

    The decision is your father's, and like I've told our grown sons, it is their father's decision, not mine, not theirs.  I don't want to help him choose because if it only buys time and is not good time, I don't want to regret it down the line and I don't want to be responsible for hastening his time.  Let your father decide, as hard as it will be and remember everyone responds differently to radiation, chemo and surgery. 

    Sharon

    Sharon,
    I definenlty agree

    Sharon,

    I definenlty agree with you, decision is Dad's.  I know what you mean about helping him and worrying about regrets.  I figure the best thing I can do is get all the information I can so that he is able to make a decision. I'm so glad that I have been an advocate for my father during all of this.  This website has given me the courage to ask the hard questions without worrying about offending the doctor.

    Reading about what your husband has gone through is heart breaking. Your husband and family will be in my thoughts and prayers.  I hope when you see the oncologist the chemo available will have less side effects.  I too worry about quality vs. quantity.

  • South Side Steve
    South Side Steve Member Posts: 32
    #8
    Surgery

    I’m coming up on the one year anniversary of my esophagectomy and I don’t regret my decision to have had it. I will admit I had some sleepless nights right before the surgery wondering if I was doing the right thing or not. I had recovered from my treatments and felt the best I had felt in five months. I kept thinking about the “major lifestyle changes” I was warned about as a result of the surgery. I just knew this is an ugly disease and I wanted to do everything I could do to fight it. I was very fortunate in that I didn’t have many complications after surgery. As for the “major lifestyle changes” I was warned about, my only lifestyle change is having to sleep in an elevated position. Other than having to give up my previously favorite hot and spicy foods and eating smaller portions, my lifestyle is pretty much the same as it was prior to surgery. Don’t get me wrong, this is major surgery and it takes a long time to recover from it, but it is definitely doable. I just felt very blessed that I was a candidate to have the surgery.

    Like Paul said, the chance of recurrence is something all of us cancer survivors live with. I just wanted to make sure I had done everything I could possibly do to prevent that recurrence. If your dad wants to talk to me about my experiences, feel free to contact me via private message and I will give you my contact information. I know it helped me to talk to persons that had gone through the surgery before I had mine. Good luck to your dad in whichever decision he makes.

    Steve

    DX 11/2011 (T2N1M0 Stage IIB), Chemo/Radiation 11/2011 - 1/2012, Ivor Lewis Surgery 3/13/2012

     

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