Not Curable but Treatable?

Hello,

I wondered if anyone could help me. Any assistance or suggestions that can be provided would be greatly appreciated.

My mother is 86 years old and was diagnosed with esophageal cancer in February. She had a PET Scan done in February and another PET Scan done recently in August.

The initial PET Scan showed that she had cancer in the mid esophagus area with thickening of the esophageal wall.

However, it also showed that the cancer had spread to a large area of her chest between the lungs and showed multiple enlarged lymph nodes in that area.

The doctor recommended that she have chemo. He didn’t want to give her radiation because the cancer had spread to an area near her lungs, and he was afraid that radiation could possibly damage her lungs. He also mentioned that since the cancer had spread outside of the esophagus and due to her advanced age, surgery was not an option.

My mother received the FolFox treatment (Oxaliplatin and Fluorouracil).

She was supposed to get the treatment every other week. However, since chemo was very difficult for her, after the first session, she asked to have treatment once every three weeks. Her doctor did not object.

After 3 sessions of chemo, however, she experienced a major problem with her eye and needed to have surgery. She therefore stopped chemo for 2 months so she could regain her strength and have eye surgery done.

She returned for more chemo after a 2 month break and continued with the Folfox treatment for another 3 sessions. Thus, she had chemo for a total of 6 sessions once every three weeks over about a 5 and a half month period.

She recently had a PET Scan done, and the results were about the same as the PET Scan that was done about 6 months ago. Everything was “stable” or “not significantly changed” compared to the prior PET Scan.

The index lesion had changed somewhat. The size of the index lesion from the first report and second report was reported as follows:

8/21/2011: 21 x 15 mm (3-253 contrast study)
2/24/2011: 19 x 15 mm (3-129)

The second PET Scan also found that she now has a blood clot in her lung for which the doctor has given her a medicine called Cumaden.

Quite frankly, I have been extremely worried and terrified for quite some time. I had several questions, and if anyone could answer any of them, I would deeply appreciate it.

1. When I asked her doctor about the stage of the cancer, he said it was hard to interpret the results. He guessed that it’s somewhere between a stage 3 and a stage 4.

Can’t they give a more definite assessment of the stage of the cancer? How does “staging” take place?

2. My mother was receiving chemo over a 2 and a half day period. In other words, she received chemo at the hospital for about 2 and a half hours or so, then they attached a pump to her which she took home, and she received chemo through the pump for another day and a half.

Is that how chemo is normally given? I’ve heard that most people have chemo over a 4 or 5 day period.

3. The doctor said that overall he thought the second PET Scan indicated good news since the cancer had not spread and it was less active.

Would you agree that this is good news? I was hoping for better results given that she had gone through 6 chemo sessions.

4. Her doctor is not sure what to do next. He said he may try some radiation on her esophagus area but he wanted to consult with another doctor first.

Does anyone have any ideas what could be tried now?

5. From the beginning the doctor mentioned that her condition is not curable, but that it is treatable.

Does anyone think that she can eventually be cured?

6. If her condition is treatable, what would that entail?

In other words, would she have to continually go in for 6 sessions of chemo, have a break for a month or so, and then go in for another 6 sessions of chemo?

That sounds like a very depressing way to live for the little time one has available.

Thank you for taking the time to read this. If you have any answers or thoughts, I would appreciate hearing from you.

Comments

  • Daisylin
    Daisylin Member Posts: 365
    Hi Tom
    Hi and welcome, glad you found us. You will find many helpful answers to all your questions here, and more!
    First, so sorry to hear about your mother. It sounds like she's had a pretty miserable time lately. You must be so worried for her.

    first, I don't know what your mom's staging would be, but perhaps this chart will help you

    Stage 0 (Carcinoma in Situ)

    In stage 0, abnormal cells are found in the innermost layer of tissue lining the esophagus. These abnormal cells may become cancer and spread into nearby normal tissue. Stage 0 is also called carcinoma in situ.

    Stage I

    In stage I, cancer has formed and spread beyond the innermost layer of tissue to the next layer of tissue in the wall of the esophagus.

    Stage II

    Stage II esophageal cancer is divided into stage IIA and stage IIB, depending on where the cancer has spread.

    Stage IIA: Cancer has spread to the layer of esophageal muscle or to the outer wall of the esophagus.
    Stage IIB: Cancer may have spread to any of the first three layers of the esophagus and to nearby lymph nodes.
    Stage III

    In stage III, cancer has spread to the outer wall of the esophagus and may have spread to tissues or lymph nodes near the esophagus.

    Stage IV

    Stage IV esophageal cancer is divided into stage IVA and stage IVB, depending on where the cancer has spread.

    Stage IVA: Cancer has spread to nearby or distant lymph nodes.
    Stage IVB: Cancer has spread to distant lymph nodes and/or organs in other parts of the body.

    I don't know what exactly the large area of her chest and between the lungs means. Sounds like it may be a iva, which is not curable, but certainly treatable, as you know. Any stage iv is deemed palliative care, with the goal being comfort and quality of life. There is a chance of shrinking the tumors (which is indeed good news!!!!!)

    I think for many at this stage, it becomes a question of how much chemo is too much? If her quality of life is severely compromised by the side effects of chemo, some decide to stop treatment, some decide to forge ahead, at any cost. Only your mom can decide how long and how hard she's willing to fight. This is a nasty disease, as I'm sure you've already discovered.

    My husband (stage ivb) had a totally different chemo, but from reading here, I know that there are many different types of chemos and many schedules for treatment. For example, my husband had iv treatment for 6 hours, followed by 2 weeks of oral chemo, followed by a one week break. This was repeated 4 times. Others have similar to what your mom has, some are totally different altogether.

    The thing with chemo, it gets harder to tolerate the weaker she gets. Chemo destroys the bad cells as well as the good cells, leaving the patient weak, fatigued and lowers blood counts as well as other counts. Our doctor said that after the initial 4 rounds, that he wanted to wait as long as possible before starting up again. My husband also had some shrinkage after the first treatments. Unfortunately, his cancer is now growing rapidly, spreading and he has chosen to not return to chemo. He tried one round and found it to be unbearable, due to the fact that he just never fully recovered from the first batch. He was dehydrated, starving and so very weak. He is still very tired, but has his pain fairly well managed and a feeding tube helped greatly with the weight loss and dehydration.

    One thing our doctor mentioned to us.... Lee's mom was diagnosed with lung cancer, she's 83 and has mid stage alzheimer disease. She's a pretty weak and fragile woman. The doctor suggested radiation and chemo, but also made a strong point of saying that

    1. older individuals with cancer tend to see very slow spread of the disease, due to the body slowing down and not generating as many new cells as a younger person.
    2. She would likely do better untreated, as the stress and side effects would probably be too much for her to bear. The cancer is unlikely to kill her. (not to sound morbid, but basically she's likely to die of something else)

    Of course, it's a different cancer, and she only had one spot on her lung, with no mets anywhere. Just thought I'd share that anyways, in case it helps.

    You never mentioned how your mom feels about all this??? Also, has she been eating and staying hydrated? That is so important in this fight. She needs to stay as strong as possible. For an 86 year old woman, that must be especially difficult. I wish you the best for your mom. I hope she has the strength and courage to make the best choices for her situation. There is never a right or wrong decision, and everyone here understands the pain and confusion around making these difficult choices.

    Be well,
    Chantal
    wife of Lee, (leeinlondon) stage ivb
  • TomM1956728
    TomM1956728 Member Posts: 64
    Daisylin said:

    Hi Tom
    Hi and welcome, glad you found us. You will find many helpful answers to all your questions here, and more!
    First, so sorry to hear about your mother. It sounds like she's had a pretty miserable time lately. You must be so worried for her.

    first, I don't know what your mom's staging would be, but perhaps this chart will help you

    Stage 0 (Carcinoma in Situ)

    In stage 0, abnormal cells are found in the innermost layer of tissue lining the esophagus. These abnormal cells may become cancer and spread into nearby normal tissue. Stage 0 is also called carcinoma in situ.

    Stage I

    In stage I, cancer has formed and spread beyond the innermost layer of tissue to the next layer of tissue in the wall of the esophagus.

    Stage II

    Stage II esophageal cancer is divided into stage IIA and stage IIB, depending on where the cancer has spread.

    Stage IIA: Cancer has spread to the layer of esophageal muscle or to the outer wall of the esophagus.
    Stage IIB: Cancer may have spread to any of the first three layers of the esophagus and to nearby lymph nodes.
    Stage III

    In stage III, cancer has spread to the outer wall of the esophagus and may have spread to tissues or lymph nodes near the esophagus.

    Stage IV

    Stage IV esophageal cancer is divided into stage IVA and stage IVB, depending on where the cancer has spread.

    Stage IVA: Cancer has spread to nearby or distant lymph nodes.
    Stage IVB: Cancer has spread to distant lymph nodes and/or organs in other parts of the body.

    I don't know what exactly the large area of her chest and between the lungs means. Sounds like it may be a iva, which is not curable, but certainly treatable, as you know. Any stage iv is deemed palliative care, with the goal being comfort and quality of life. There is a chance of shrinking the tumors (which is indeed good news!!!!!)

    I think for many at this stage, it becomes a question of how much chemo is too much? If her quality of life is severely compromised by the side effects of chemo, some decide to stop treatment, some decide to forge ahead, at any cost. Only your mom can decide how long and how hard she's willing to fight. This is a nasty disease, as I'm sure you've already discovered.

    My husband (stage ivb) had a totally different chemo, but from reading here, I know that there are many different types of chemos and many schedules for treatment. For example, my husband had iv treatment for 6 hours, followed by 2 weeks of oral chemo, followed by a one week break. This was repeated 4 times. Others have similar to what your mom has, some are totally different altogether.

    The thing with chemo, it gets harder to tolerate the weaker she gets. Chemo destroys the bad cells as well as the good cells, leaving the patient weak, fatigued and lowers blood counts as well as other counts. Our doctor said that after the initial 4 rounds, that he wanted to wait as long as possible before starting up again. My husband also had some shrinkage after the first treatments. Unfortunately, his cancer is now growing rapidly, spreading and he has chosen to not return to chemo. He tried one round and found it to be unbearable, due to the fact that he just never fully recovered from the first batch. He was dehydrated, starving and so very weak. He is still very tired, but has his pain fairly well managed and a feeding tube helped greatly with the weight loss and dehydration.

    One thing our doctor mentioned to us.... Lee's mom was diagnosed with lung cancer, she's 83 and has mid stage alzheimer disease. She's a pretty weak and fragile woman. The doctor suggested radiation and chemo, but also made a strong point of saying that

    1. older individuals with cancer tend to see very slow spread of the disease, due to the body slowing down and not generating as many new cells as a younger person.
    2. She would likely do better untreated, as the stress and side effects would probably be too much for her to bear. The cancer is unlikely to kill her. (not to sound morbid, but basically she's likely to die of something else)

    Of course, it's a different cancer, and she only had one spot on her lung, with no mets anywhere. Just thought I'd share that anyways, in case it helps.

    You never mentioned how your mom feels about all this??? Also, has she been eating and staying hydrated? That is so important in this fight. She needs to stay as strong as possible. For an 86 year old woman, that must be especially difficult. I wish you the best for your mom. I hope she has the strength and courage to make the best choices for her situation. There is never a right or wrong decision, and everyone here understands the pain and confusion around making these difficult choices.

    Be well,
    Chantal
    wife of Lee, (leeinlondon) stage ivb

    Thank you
    Hi Chantal,

    Thank you very much for your detailed responses. I greatly appreciate your kind help!

    The staging chart was helpful. I would imagine my mother is a Stage IVA since the cancer has spread to nearby and distant lymph nodes.

    I recall her doctor using the term “palliative,” and your description that the goal is comfort and quality of life seems to be just right.

    I’m not surprised that some people decide to stop treatment due to the side effects of chemo. I can understand since my mother is going through an extremely difficult time due to the chemo.

    I’m really sorry that your husband’s cancer is growing rapidly, and that he no longer wants to continue with chemo. I’m glad his pain is well managed and that he is gaining some weight. I will certainly pray for him.

    It is a very difficult decision to discontinue chemo, but I guess after seeing what chemo does to the body, I can understand. I know my mother is also at the point where she wants to stop getting any more chemo.

    I really appreciate what you mentioned about how older individuals tend to see a very slow spread of the disease and that they may be better off not receiving treatment due to the stress and side effects.

    I know my mother is not handling this well. So far, she has been eating a little less but nonetheless her weight has remained stable. I think that she has been able to eat because she doesn’t have much pain swallowing. The swallowing pain comes and goes, and often when she has pain swallowing it’s not that severe.

    However, she does not have any energy. She used to be so active, but now she is usually sitting down at home feeling extremely tired. And, above all, she feels very depressed.

    I very much appreciate your thoughtful answers and views. Thank you so much for your kind help. You and your husband are in my prayers!

    Tom
  • megmacmd
    megmacmd Member Posts: 85

    Thank you
    Hi Chantal,

    Thank you very much for your detailed responses. I greatly appreciate your kind help!

    The staging chart was helpful. I would imagine my mother is a Stage IVA since the cancer has spread to nearby and distant lymph nodes.

    I recall her doctor using the term “palliative,” and your description that the goal is comfort and quality of life seems to be just right.

    I’m not surprised that some people decide to stop treatment due to the side effects of chemo. I can understand since my mother is going through an extremely difficult time due to the chemo.

    I’m really sorry that your husband’s cancer is growing rapidly, and that he no longer wants to continue with chemo. I’m glad his pain is well managed and that he is gaining some weight. I will certainly pray for him.

    It is a very difficult decision to discontinue chemo, but I guess after seeing what chemo does to the body, I can understand. I know my mother is also at the point where she wants to stop getting any more chemo.

    I really appreciate what you mentioned about how older individuals tend to see a very slow spread of the disease and that they may be better off not receiving treatment due to the stress and side effects.

    I know my mother is not handling this well. So far, she has been eating a little less but nonetheless her weight has remained stable. I think that she has been able to eat because she doesn’t have much pain swallowing. The swallowing pain comes and goes, and often when she has pain swallowing it’s not that severe.

    However, she does not have any energy. She used to be so active, but now she is usually sitting down at home feeling extremely tired. And, above all, she feels very depressed.

    I very much appreciate your thoughtful answers and views. Thank you so much for your kind help. You and your husband are in my prayers!

    Tom

    CHemo Flofox
    Iam 56 years old and have stage 4a EC I have been under the flofox regime since april every 2 weeks but recently backed down to every 3-4 weeks because it was taking a toll on me My esophgeal tumor showed no cancer and my Pet scan showed marked improvement whichmeans Im in semiremission or quietesence best I can hope for this is not cureable but treatable My personal deciosion is that if the chemo get too much I will stop But fortunately being 56 and in relatively good health Ive been able to tolerate chemo fairly well Im still working full time and enjoying life as much as possible despite the fatigue and numbness in my fingers and toes. Radiation is very toxic and I wouldnt do it My mom recently (last year) died from breast cancer she was85 and was diagnoes at 63 and had a recuurance at 80 she did chemo for a while but it got to be too much they gave her 6months and she lived 5 years enjoying bridge and croquet up until the last 2 months my personal philosophy is to choose quality over quantity of life and I have made this very clear to my doctor who is great at modifying my regime to give me that option .Best of luck to you and your mom it is not easy to make these decisions but as a doctor myself I have seen too many people miss the last great moments of thier life searcing for the immpossible cure vs living with what is given to you quality while your still alive to enjoy it. Just my personal take on the whole thing. Im just hopeful to stay alive and LIVING ;life as long as possible if just to get my last child through his last 2 years of college. best wishes Meg Mcintyre
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member

    Thank you
    Hi Chantal,

    Thank you very much for your detailed responses. I greatly appreciate your kind help!

    The staging chart was helpful. I would imagine my mother is a Stage IVA since the cancer has spread to nearby and distant lymph nodes.

    I recall her doctor using the term “palliative,” and your description that the goal is comfort and quality of life seems to be just right.

    I’m not surprised that some people decide to stop treatment due to the side effects of chemo. I can understand since my mother is going through an extremely difficult time due to the chemo.

    I’m really sorry that your husband’s cancer is growing rapidly, and that he no longer wants to continue with chemo. I’m glad his pain is well managed and that he is gaining some weight. I will certainly pray for him.

    It is a very difficult decision to discontinue chemo, but I guess after seeing what chemo does to the body, I can understand. I know my mother is also at the point where she wants to stop getting any more chemo.

    I really appreciate what you mentioned about how older individuals tend to see a very slow spread of the disease and that they may be better off not receiving treatment due to the stress and side effects.

    I know my mother is not handling this well. So far, she has been eating a little less but nonetheless her weight has remained stable. I think that she has been able to eat because she doesn’t have much pain swallowing. The swallowing pain comes and goes, and often when she has pain swallowing it’s not that severe.

    However, she does not have any energy. She used to be so active, but now she is usually sitting down at home feeling extremely tired. And, above all, she feels very depressed.

    I very much appreciate your thoughtful answers and views. Thank you so much for your kind help. You and your husband are in my prayers!

    Tom

    Welcome
    Hi Tom and welcome to you and your mom. I was a caregiver for my dad. He passed from esophageal cancer in March 2010. He could not have the surgery...stage IV, with mets to the liver. He too was told chemo for palliative care, not a cure. We went for it, it was a good year. Then his quality of life was gone, he was in pain and suffering. Let your mom make the decisions about her care and treatment. She can get help with the depression from therapy and anti depressant meds. Quality of life outweighs quanity of life here. Go with your gut feelings. Lean on us anytime and always. We have all been where you are.
    We are here for you.
    Tina in Va
  • TomM1956728
    TomM1956728 Member Posts: 64
    megmacmd said:

    CHemo Flofox
    Iam 56 years old and have stage 4a EC I have been under the flofox regime since april every 2 weeks but recently backed down to every 3-4 weeks because it was taking a toll on me My esophgeal tumor showed no cancer and my Pet scan showed marked improvement whichmeans Im in semiremission or quietesence best I can hope for this is not cureable but treatable My personal deciosion is that if the chemo get too much I will stop But fortunately being 56 and in relatively good health Ive been able to tolerate chemo fairly well Im still working full time and enjoying life as much as possible despite the fatigue and numbness in my fingers and toes. Radiation is very toxic and I wouldnt do it My mom recently (last year) died from breast cancer she was85 and was diagnoes at 63 and had a recuurance at 80 she did chemo for a while but it got to be too much they gave her 6months and she lived 5 years enjoying bridge and croquet up until the last 2 months my personal philosophy is to choose quality over quantity of life and I have made this very clear to my doctor who is great at modifying my regime to give me that option .Best of luck to you and your mom it is not easy to make these decisions but as a doctor myself I have seen too many people miss the last great moments of thier life searcing for the immpossible cure vs living with what is given to you quality while your still alive to enjoy it. Just my personal take on the whole thing. Im just hopeful to stay alive and LIVING ;life as long as possible if just to get my last child through his last 2 years of college. best wishes Meg Mcintyre

    Treatment
    Thank you very much for your comments, Meg.

    My mother received the same treatment you did, the flofox treatment. However, her results were not nearly as good as yours.

    I think it may have to do with the fact that she is 86 years old and has high blood pressure.

    Also, she was going in for treatment once every three weeks since she couldn’t tolerate the chemo well.

    In fact, due to the difficulty she had with the chemo, after three sessions, she stopped treatment for 2 months. She then returned for three additional treatments. I think the two month break was a big mistake.

    It’s great that your esophageal tumor shows no cancer, and that there was so much improvement! It’s encouraging to know that such good results are possible. However, given my mother’s age and health problems, and inability to tolerate chemo, I don’t think she can obtain such good results.

    It’s amazing that your mother was able to survive 5 years, and enjoy a high quality of life for so long after stopping chemo. She must have been a very strong person.

    I’m sure you will be able to get your last child through his last 2 years in college. You’ve already achieved great results with the chemo and from what my mother’s doctor told me, there are some people who do not obtain positive results from chemo.

    I wish you all the best. Thank you once again for your thoughts and help. Tom
  • TomM1956728
    TomM1956728 Member Posts: 64

    Welcome
    Hi Tom and welcome to you and your mom. I was a caregiver for my dad. He passed from esophageal cancer in March 2010. He could not have the surgery...stage IV, with mets to the liver. He too was told chemo for palliative care, not a cure. We went for it, it was a good year. Then his quality of life was gone, he was in pain and suffering. Let your mom make the decisions about her care and treatment. She can get help with the depression from therapy and anti depressant meds. Quality of life outweighs quanity of life here. Go with your gut feelings. Lean on us anytime and always. We have all been where you are.
    We are here for you.
    Tina in Va

    Thank you
    Thank you Tina for your comments and help.

    I’m very sorry that your dad passed away. I know that when it spreads to the liver, it’s very hard to survive.

    I’m glad that you had a good year together. It’s great that your dad had a good caregiver like you to help him.

    From what I understand from my mother’s doctor, her cancer has not yet spread to any organ, but it is close to her lungs. I don’t think she can survive long when it spreads that far. Right now, she is really going through a difficult time with the chemo. It is very depressing. But I think the antidepressant meds is a great idea.

    It’s great to know that you folks are around and can provide support and assistance. Once again, thank you for your thoughts and concern.

    Tom