Talked to the oncologist today

dlrepic

good day,

To recap, my father had Pre-op chemoradiation therapy, MIE and is now home. The surgical pathology report shows that 1/15 lymph nodes removed had active cancer cells. Both the oncologist and surgeon have said that dad doesn't need post-op chemo. When I talked to the oncologist today to question this decision, she said that it was the protocol and then she seemed ittiated that I would question her methods. I mentioned that I had researched and read/particpated in discussion boards and to quote, "Those are patients, not doctors", well I think that I would much rather take advice from a survivor, or a care giver of someone not as fortunate, and learn from others' experience than take her word for it.

If anyone has documentation/studies/research that you can share with me that I might take to the next appointment to make a point, I'd really appreciate it. I have the documents from the American Cancer Society and an abstract from Dr Luketich named "Resection for Esophageal Cancer: Strategies for Optimal Management".

Thank you
Danielle

paul61

I think your oncologist has it slightly wrong
Danielle,

I think your oncologist has it slightly wrong when she says "those are patients, not doctors". My response to that would be "those are SURVIVORS, not doctors". I think it is time to get a second opinion from a different oncologist. The fact is, we SURVIVORS had post operative chemo at the suggestion of our DOCTORS.

If it were me I would think it is time to move on.

Regards,

Paul Adams
McCormick, South Carolina

dlrepic

paul61 said:

I think your oncologist has it slightly wrong
Danielle,

I think your oncologist has it slightly wrong when she says "those are patients, not doctors". My response to that would be "those are SURVIVORS, not doctors". I think it is time to get a second opinion from a different oncologist. The fact is, we SURVIVORS had post operative chemo at the suggestion of our DOCTORS.

If it were me I would think it is time to move on.

Regards,

Paul Adams
McCormick, South Carolina

I agree
Her Senior partner treated my husband and I was very pleased with the care we received, but he'll tell you that I don't take things without proof. So far I've got a book made up of all the survivor stories, encouragement and suggestions. I have told my dad that we will be getting a second opinion soon. Even if I have to take him out of state.

Thanks
Danielle

Unknown

dlrepic said:

I agree
Her Senior partner treated my husband and I was very pleased with the care we received, but he'll tell you that I don't take things without proof. So far I've got a book made up of all the survivor stories, encouragement and suggestions. I have told my dad that we will be getting a second opinion soon. Even if I have to take him out of state.

Thanks
Danielle

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nancyann3

unknown said:

This comment has been removed by the Moderator

I have no experience with surgery yet..
But I would think common sence would tell u if a live cancer was found. It will grow.

What I do have experience with is meeting resistance from medical teams and being discounted and "put in your place" as a caregiver. Some medical teams hate it when a patient or caregiver are to informed. Hold your position and find another opinion. Dont waste your time getting discusted and mad at your onc. It drains you when your energy can best be used elsewhere. I've learned this the hard way. Good luck, and always remember you know what your dad needs and dont let them tell you different.

Nancy

BMGky

The node was removed?
I'm a little confused. The biopsy of the removed lymph node had active cells. So that node is removed. The others were negative. Did his pre-op post chemo/radiation show any cancer present? So, the fact that the removed lymph node had active cells suggests that the chemo/radiation did not kill all the cancer cells elsewhere? My husband's pre-op PET showed no cancer activity. Yet, upon biopsy of the removed esophagus, under the scar tissue, cancer cells were found. All lymph nodes biopsied were negative. No post-op treatment has been recommended. They follow him closely. This is, of course, a different situation. The esophagus organ was removed and with it the cancer. In your instance, a cancer containing lymph node was removed. Lymph nodes are a system that run throughout the body. Thus, if I understand correctly, I would want further chemo to kill any little cancer cells that had escaped. It suggests to me that the pre-op treatment didn't kill all of the cells. It is true, the oncologist did follow the protocol for such cases; however, your father did not have a complete response to his pre-op treatment and as such, an expanded post-op chemo regimen would be of necessity. She is correct this board is made up of patients and caregivers---not doctors. Maybe you can share with her the rhabdomyliosis that my husband experienced with Zocor--statin side effects. The well-trained specialists said that they had never heard of such side effects or that they were rare. He nearly lost his ability to walk. One doctor apologized to my husband for his failure to make the association. When he stopped taking the statin, the muscle cramps and weakness went away. At the request of our family doctor tried a statin again, post-op, this time with CQ10. Two weeks in, muscle cramps. Stopped the Crestor. No more muscle cramps. With three doctors in our family, they still call and ask Mom or Mom-in-law what to do for this or that. The closest I've been to a medical school is paying tuition and expenses. But I've spent 30 plus years in doctors' offices and emergency rooms taking care of my children and grandchildren. As I ramble, it is one thing to follow a protocol. It is another to treat. She needs to explain how your father's condition with post chemo/radiation active cells fit into the current protocols that suggest active cells should not be present. A more thorough explanation rather than a put down would ease your mind and help you make decisions.

Callaloo

If it's adenocarcinoma...
Danielle,
I just looked at the standard oncology treatment guidelines (I have a hard copy from an oncologist friend of mine) and if a positive node is found after surgery, post-op chemo is one of the recommendations if the EC is adenocarcinoma. The decision is based on a number of different considerations. On the other hand if it is squamous cell, then "observation" is recommended. Not sure this helps you. I'm happy to scan the page and email it to you, but I don't see email addresses on anyone's profile. Let me know if you think this applies to you, and we'll figure it out.

dlrepic

Callaloo said:

If it's adenocarcinoma...
Danielle,
I just looked at the standard oncology treatment guidelines (I have a hard copy from an oncologist friend of mine) and if a positive node is found after surgery, post-op chemo is one of the recommendations if the EC is adenocarcinoma. The decision is based on a number of different considerations. On the other hand if it is squamous cell, then "observation" is recommended. Not sure this helps you. I'm happy to scan the page and email it to you, but I don't see email addresses on anyone's profile. Let me know if you think this applies to you, and we'll figure it out.

yes
He has adenocarcinoma. His post chemoradiation/pre-op PET scan showed active tumor. Agreed. the initial treatment did not do what we had hoped. The doctors said that they had wanted the chemoradiation to shrink the tumor so that it could be easier to remove. I had asked for additional chemo prior to surgery, but they then moved his surgery up by a week and there was no time for me to make a case. Dad did remarkably with his surgery, but I have informed him that his doctors have told him incorrect information when they told him he wouldn't need additional chemo. I have convinced him that he needs to get another opinion (or more), but he has also said that he wasn't sure if he would do further treatment if given the option. I'm very persuassive, so I'm sure he would:) I have the name of an aggressive oncologist and hope to contact him today.

Thanks
Danielle

BMGky

dlrepic said:

yes
He has adenocarcinoma. His post chemoradiation/pre-op PET scan showed active tumor. Agreed. the initial treatment did not do what we had hoped. The doctors said that they had wanted the chemoradiation to shrink the tumor so that it could be easier to remove. I had asked for additional chemo prior to surgery, but they then moved his surgery up by a week and there was no time for me to make a case. Dad did remarkably with his surgery, but I have informed him that his doctors have told him incorrect information when they told him he wouldn't need additional chemo. I have convinced him that he needs to get another opinion (or more), but he has also said that he wasn't sure if he would do further treatment if given the option. I'm very persuassive, so I'm sure he would:) I have the name of an aggressive oncologist and hope to contact him today.

Thanks
Danielle

Please keep us informed
Hope you can get your appointment as soon as possible. The fact that your father was a surgical candidate indicates the possibility of surviving the EC diagnosis. Many, many on this board are survivors. So, we all are praying for you and your father's success.