My dad (65 yrs old)
Sincerely,
Margaret
Comments
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You should get the EUS and a second opinion
Margaret,
You should definately insist they do an endoscopic ultra sound (EUS. A less than 3 x 3 CM tumor is not very big. It seems a bit premature to say the tumor is inoperable without appropriate staging. I would suggest you urge your father to get a second opinion from a doctor who has experience with treating Esophageal Cancer.
If you need the name and contact information of competent surgical oncologists and cancer treatment locations the people on this board can help you with that. But I think you father needs more information about staging and why a tumor that small is not operable prior to starting a treatment plan.
Paul Adams
AKA "paul61"
McCormick, South Carolina0 -
Pet Scan
Dear Margaret,
My husband was diagnosed with stage 2 EC until the PET scan that showed a lymph node involvement then it was stage 3. The ultrasound didn't show it either. Please get another opinion! Time is precious...
I'm so sorry your family has started on this journey. Hoping that you find someone to come alongside you and get testing done quickly and answer your questions. This is a great place to vent and to ask questions. This is a family like non other!!
Blessings,
Susie0 -
Yikes get another opinion and the EUS is important!!!Lylesmyprince said:Pet Scan
Dear Margaret,
My husband was diagnosed with stage 2 EC until the PET scan that showed a lymph node involvement then it was stage 3. The ultrasound didn't show it either. Please get another opinion! Time is precious...
I'm so sorry your family has started on this journey. Hoping that you find someone to come alongside you and get testing done quickly and answer your questions. This is a great place to vent and to ask questions. This is a family like non other!!
Blessings,
Susie
Hi,
My PET Cat scan did not show my cancer it was on the regular EGD that I had positive cancer cells but at first they thought mine was going to be scoopable no big surgery, but the EUS was the most important test, I went from being in situ to T3N1MO in 2 days after the EUS and that was the most crucial part for me. I am in complete agreement with everyone who says get a second opinion and also find a hospital very familiar with EC and doing treatment and surgeries on a regular basis. This is the most crucial time and I don't know how someone could plan radiation and chemo without knowing what and where they are dealing with. Good luck but so sorry you and your family are on this bumpy road. take care, prayers always,
Donna700 -
you NEED a 2nd opinion-this Cancer needs aggressive -specific RX
Margaret
If there is any way you can get to a bigger hospital that has more experience treating a lot of this kind of cancer, I don't think you'd regret it. But time is precious too... The Dr is right, he needs chemo and radiation, but when my dad was treated earlier this year at Duke (for stage 3), they were very specific with mapping out the cancer for his radiation. SO I can not imagine not having at least the Endoscopic ultra sound!
What more about the tumor (besides being "above his heart") makes it inoperable? It may be that the hospital is not experienced in this surgery. The original cancer center that my dad was at was honest with him. The consulting surgeon had never done this type of surgery---even his boss (head GI surgeon) had only done a few, but many years ago. So they told my dad he had to go to a bigger hospital for specialized treatment. He did end up doing a clinical trial of 3 different chemo drugs & radiation followed by a mostly laproscopic procedure. He is almost finished with follow up chemo and gets a follow up full body CT scan at the end of this month. If they see something suspicious, they will do a PET scan. Apparently the areas near the surgery sometimes show up on PET scans due to inflammation. (that is what they told him).
Bottom line is that he is doing very well but got about the most aggressive treatment his body could tolerate.
Prayers for you both --and for the doctors wisdom in your dad's situation!
Kim0 -
Welcome
Hi Margaret and welcome to our family of survivors to you and your family. I agree with all of the others. A second opinion is most definitely needed. Always go with your gut feeling.
When in doubt.....get a second opinion. I live in Virginia, so we took my dad to UVA. I am not familiar with the DC area, but I know there are wonderful cancer specialists in Maryland, Pennsylvania, North Carolina. Contact the American Cancer Society and see who they recommend in your area. Time can not be wasted. Get on this right away. One of you in the family have to take charge of all of the calling, appointments, testing, etc. We will be praying for you. Keep in touch.
Tina0 -
Thank you, thank you, thank you!
I'm so glad that my family and I found this website.
A little more info on my dad: he went to see his gastro dr, Dr. Hernandez in Frederick, MD on 6/15 to have his esoph stretched as he was having trouble swallowing food and his meds for his crohn's disease for a couple of weeks. (The same thing happened to him about 7 yrs ago and gastro dr stretched his esoph and dad was fine. Dad has been going to the same gastro dr for about 14 yrs ever since he was diagnosed with crohn's disease.) The dr found the mass when stretching dad's esoph. She ordered a CT scan which dad had on 6/17 and he received the news of the EC on 6/18. Dad's appetite is great...my dad is about 25 lbs overweight but I understand at this point it's good that he has the extra reserve. He is not in any pain. The only problem he is having is swallowing. Dad is scared but very ready to kick this thing. He is ready for any treatment he needs to have. I really feel he will kick this illness. He is young, only 65; 66 in October. Dad's overall health is good. He has crohn's disease which has been managed with meds, he's been very lucky. He also has arthritis, managed with meds, and acid reflux which he takes meds for. My sister, my mom and I have been and will be with dad through this process. He also has lots of friends and sisters who have been supporting him through this tough time.
We received really good news yesterday. After we talked to dad's gastro dr's office about the onc dr's lack of interest in finding more info, the gastro dr scheduled a PETscan for dad in Frederick tomorrow (Friday), and she contacted Dr. Greenwald who specializes in EC at University of MD. We are waiting for him to call us with an appt date and time. Dr. Hernandez has been so wonderful and helpful.
Yesterday dad had a small meltdown. He wants to get treatment now! He feels the cancer is growing and spreading. My sister printed a bunch of survivor postings for dad to read to help him calm down and know that there are a lot of survivors out there who have been through the same thing that he is going through. He is doing better now.
We are going to dad's radiogolist (sp?) appt today, just to start the process in case we do the treatment in Frederick.
Thanks for your support and information!!!0 -
Margaret you are on the right track!!Margaret N said:Thank you, thank you, thank you!
I'm so glad that my family and I found this website.
A little more info on my dad: he went to see his gastro dr, Dr. Hernandez in Frederick, MD on 6/15 to have his esoph stretched as he was having trouble swallowing food and his meds for his crohn's disease for a couple of weeks. (The same thing happened to him about 7 yrs ago and gastro dr stretched his esoph and dad was fine. Dad has been going to the same gastro dr for about 14 yrs ever since he was diagnosed with crohn's disease.) The dr found the mass when stretching dad's esoph. She ordered a CT scan which dad had on 6/17 and he received the news of the EC on 6/18. Dad's appetite is great...my dad is about 25 lbs overweight but I understand at this point it's good that he has the extra reserve. He is not in any pain. The only problem he is having is swallowing. Dad is scared but very ready to kick this thing. He is ready for any treatment he needs to have. I really feel he will kick this illness. He is young, only 65; 66 in October. Dad's overall health is good. He has crohn's disease which has been managed with meds, he's been very lucky. He also has arthritis, managed with meds, and acid reflux which he takes meds for. My sister, my mom and I have been and will be with dad through this process. He also has lots of friends and sisters who have been supporting him through this tough time.
We received really good news yesterday. After we talked to dad's gastro dr's office about the onc dr's lack of interest in finding more info, the gastro dr scheduled a PETscan for dad in Frederick tomorrow (Friday), and she contacted Dr. Greenwald who specializes in EC at University of MD. We are waiting for him to call us with an appt date and time. Dr. Hernandez has been so wonderful and helpful.
Yesterday dad had a small meltdown. He wants to get treatment now! He feels the cancer is growing and spreading. My sister printed a bunch of survivor postings for dad to read to help him calm down and know that there are a lot of survivors out there who have been through the same thing that he is going through. He is doing better now.
We are going to dad's radiogolist (sp?) appt today, just to start the process in case we do the treatment in Frederick.
Thanks for your support and information!!!
Hi,
Glad to hear your DAD is being referred to Dr. Greenwald at U of MD, I was referred to him but decided to go with St. Joseph's in Towson MD but all my drs come from U of MD and they were trained there and started out their cancer careers there which made me feel very confident in their care. I was 65 just like your Dad when diagnosed last July. I have had my chemo, radiation, surgery, cleanup chemo and after 6 months am turning the corner to feeling like my old self. Have had some complications but am cancer free so far. Before the drs start the treatment, you have to undergo tests, they may be different for every person, lung studies, colonoscopy, an EUS to stage it and then they schedule the start of treatment. Tell your Dad it is better not to rush into the wrong treatment quickly but rather to have the drs plan the fight against his EC for his individual case. I know you mentioned your Dad's is high up in his chest. Mine was between my breasts and the lymph node bad one was on the other side so I had to have my throat incised also. But it was still operable. Good luck and hope your Dad does well. take care,
Donna700 -
Can dad drive himself to treatment sessions?Margaret N said:Thank you, thank you, thank you!
I'm so glad that my family and I found this website.
A little more info on my dad: he went to see his gastro dr, Dr. Hernandez in Frederick, MD on 6/15 to have his esoph stretched as he was having trouble swallowing food and his meds for his crohn's disease for a couple of weeks. (The same thing happened to him about 7 yrs ago and gastro dr stretched his esoph and dad was fine. Dad has been going to the same gastro dr for about 14 yrs ever since he was diagnosed with crohn's disease.) The dr found the mass when stretching dad's esoph. She ordered a CT scan which dad had on 6/17 and he received the news of the EC on 6/18. Dad's appetite is great...my dad is about 25 lbs overweight but I understand at this point it's good that he has the extra reserve. He is not in any pain. The only problem he is having is swallowing. Dad is scared but very ready to kick this thing. He is ready for any treatment he needs to have. I really feel he will kick this illness. He is young, only 65; 66 in October. Dad's overall health is good. He has crohn's disease which has been managed with meds, he's been very lucky. He also has arthritis, managed with meds, and acid reflux which he takes meds for. My sister, my mom and I have been and will be with dad through this process. He also has lots of friends and sisters who have been supporting him through this tough time.
We received really good news yesterday. After we talked to dad's gastro dr's office about the onc dr's lack of interest in finding more info, the gastro dr scheduled a PETscan for dad in Frederick tomorrow (Friday), and she contacted Dr. Greenwald who specializes in EC at University of MD. We are waiting for him to call us with an appt date and time. Dr. Hernandez has been so wonderful and helpful.
Yesterday dad had a small meltdown. He wants to get treatment now! He feels the cancer is growing and spreading. My sister printed a bunch of survivor postings for dad to read to help him calm down and know that there are a lot of survivors out there who have been through the same thing that he is going through. He is doing better now.
We are going to dad's radiogolist (sp?) appt today, just to start the process in case we do the treatment in Frederick.
Thanks for your support and information!!!
Dad had his PET Scan on 6/25 in Frederick and the EUS at University of MD on 6/30. The tumor is very high in his esoph, very close to the top of the wind pipe and voice box. We met with Dr. Oh in Frederick to discuss the PET results. He felt the only spreading that may have happened is to a lymph node very close to the tumor. Dr. Greenwald did the EUS. He found 4 possibly infected lymph nodes during the EUS, and two tiny nodules 1/2 below the tumor. He couldn't biopsy the nodes because they were located behind he tumor and he did not want to go through the tumor and spill cancer cells, and the nodules were too small. He felt the nodules would be killed during radiation. Yesterday, we met with a team of doctors at University of MD, Dr. Battafarano (Thoracic Surgeon), Mohan Suntha (Radiation Oncologist), Naomi Horiba (Oncologist) which was a very informative and positive meeting. The first thing we found out was dad will have surgery to biopsy the lymph nodes. They will go through his abdomen up to the nodes located on the outside of the esoph. We will be contacted when the surgery has been scheduled. My dad's first surgery in his life! Rad will happen 5 days a week for 5-5 1/2 weeks. They will be very careful not to damage his voice box and wind pipe. The chemo will be six weekly (Mondays) doses of Paclitaxel and Cisplatin. Due to the location of the tumor, surgery will be a very last resort. The surgery could damage the voice box and wind pipe so surgery is definitely wait and see at this point. The doctors at U of MD were so professional, friendly, knowledgable, Dad is leaning towards having his treatment at UofMD. The only concern is getting to UofMD daily. He wants to be able to drive himself an hour each way. Do you feel this is realistic?0 -
probably can't drive everytime untill the end of treatment...Margaret N said:Can dad drive himself to treatment sessions?
Dad had his PET Scan on 6/25 in Frederick and the EUS at University of MD on 6/30. The tumor is very high in his esoph, very close to the top of the wind pipe and voice box. We met with Dr. Oh in Frederick to discuss the PET results. He felt the only spreading that may have happened is to a lymph node very close to the tumor. Dr. Greenwald did the EUS. He found 4 possibly infected lymph nodes during the EUS, and two tiny nodules 1/2 below the tumor. He couldn't biopsy the nodes because they were located behind he tumor and he did not want to go through the tumor and spill cancer cells, and the nodules were too small. He felt the nodules would be killed during radiation. Yesterday, we met with a team of doctors at University of MD, Dr. Battafarano (Thoracic Surgeon), Mohan Suntha (Radiation Oncologist), Naomi Horiba (Oncologist) which was a very informative and positive meeting. The first thing we found out was dad will have surgery to biopsy the lymph nodes. They will go through his abdomen up to the nodes located on the outside of the esoph. We will be contacted when the surgery has been scheduled. My dad's first surgery in his life! Rad will happen 5 days a week for 5-5 1/2 weeks. They will be very careful not to damage his voice box and wind pipe. The chemo will be six weekly (Mondays) doses of Paclitaxel and Cisplatin. Due to the location of the tumor, surgery will be a very last resort. The surgery could damage the voice box and wind pipe so surgery is definitely wait and see at this point. The doctors at U of MD were so professional, friendly, knowledgable, Dad is leaning towards having his treatment at UofMD. The only concern is getting to UofMD daily. He wants to be able to drive himself an hour each way. Do you feel this is realistic?
Margaret,
everyone is different and reacts differently, but most have at least some difficulty, especially as treatment goes on. (Also, everyone has different types of chemo/radiation).
But my dad who was very healthy before hand, did extremely well until he was in 4 1/2 weeks to a 6 week clinical trial of aggressive chemo & radiation. At that time, things caught up to him---a combination of side effects created dehydration, anemia & diarrhea. He was so weakened at one point, not only couldn't he drive, he was pushed in a wheelchair while navigating through the hospital where he was treated! This is a guy who prided himself on still being a volunteer firefighter and driving firetrucks! My mom definitely had to drive at that time. They lived 3 1/2 hours from Duke where he got his treatment, so actually had to stay in a Quality Inn for those 6 weeks in a suite that had a little kitchen. They did get "medical discount" but it does end up being expensive.
Any way---if there is a friend or relative that can be available, it might be necessary and dangerous if he gets dizzy or something while driving---especially toward the end.
Good Luck!
Kim0 -
3 Cheers to All!!Margaret N said:Can dad drive himself to treatment sessions?
Dad had his PET Scan on 6/25 in Frederick and the EUS at University of MD on 6/30. The tumor is very high in his esoph, very close to the top of the wind pipe and voice box. We met with Dr. Oh in Frederick to discuss the PET results. He felt the only spreading that may have happened is to a lymph node very close to the tumor. Dr. Greenwald did the EUS. He found 4 possibly infected lymph nodes during the EUS, and two tiny nodules 1/2 below the tumor. He couldn't biopsy the nodes because they were located behind he tumor and he did not want to go through the tumor and spill cancer cells, and the nodules were too small. He felt the nodules would be killed during radiation. Yesterday, we met with a team of doctors at University of MD, Dr. Battafarano (Thoracic Surgeon), Mohan Suntha (Radiation Oncologist), Naomi Horiba (Oncologist) which was a very informative and positive meeting. The first thing we found out was dad will have surgery to biopsy the lymph nodes. They will go through his abdomen up to the nodes located on the outside of the esoph. We will be contacted when the surgery has been scheduled. My dad's first surgery in his life! Rad will happen 5 days a week for 5-5 1/2 weeks. They will be very careful not to damage his voice box and wind pipe. The chemo will be six weekly (Mondays) doses of Paclitaxel and Cisplatin. Due to the location of the tumor, surgery will be a very last resort. The surgery could damage the voice box and wind pipe so surgery is definitely wait and see at this point. The doctors at U of MD were so professional, friendly, knowledgable, Dad is leaning towards having his treatment at UofMD. The only concern is getting to UofMD daily. He wants to be able to drive himself an hour each way. Do you feel this is realistic?
Hi Margaret and thank you for your recent update on your dad! You have done an excellent job! I was so pleased to read that you had gone to the gastro dr. and had gotten a 2nd opinion. Wonderful. Now you have the ball rolling. University of Maryland sounds great too!
As far as dad driving himself, my dad did! And was so proud of himself for doing so!Mom or I would always go with him though. Just take it day by day. If dad feels up to it, go for it, if not he can be driven. I say to stay with the university of MD! Best of luck, we will be thinking and praying for you. Stay in touch.
Tina0
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