Helena50 - We are moving you to the top so you don't get lost at the end of a string of posts

Helena50 said:

update
Took my husband to Faulkner Hospitalin Boston to meet with Doctor Peter Enzinger, oncologist for EC.
The current oncologist agreed that a second opinion would be a good idea. The radiolegist at Mercy said there was a perforation in the stomach but the oncologist and other doctors said there was not. Doctor Enzinger said there was a perforation but it was contained. Since all records were not received in a timely maner Doctor Enzinger sent us home and requested a list of records from day one. He also wantes to do a endoscopy and get a biopsy to see if there is a tumor. It seems that all of these Doctors are unsure if there is a tumor or not. I pleaded with Doctor Enzinger to admit my husband to this hospital and do want he thought would be best to diognoci this very complex situation. He said to us " I just met you today where have you been in the last three months Untill I receive all the reports I can not do anything." Today I spoke with Doctor Podbielski the surgeon that operated and performed the surgery back in 2009. He is no longer associated with this case since he moved away from the area. He told me he would drive to Mercy hospital to look at the reports and PET scan. He did do all of this and called me to let me know that he does not believe there is a perforation and that the tumor has grown and is in the lemf nodes outside of the stomach which is the same location that it was back in November 2011 the reoccurrence. When my husband left the Hospital 10/9/2012 his oncologist said he has 6-12 months to live. We also found out that his tumor was 5cm in November 2011 and now its 4cm. We were also told by his oncologist back in February 2012 when all the radiation and chemo ended and a PET scann was done that the tumor had shrunk and there was only scar tissue left. It also has come to our attention that the tumor was 3cm in February and not just scar tissue. This has been a night mare for all of us. Now my husband is on pain killers and ivy fluids at home, he is eating very little and has become weaker and continues to loose weight. Doctor Podbielski is calling the Oncologist here in Springfield, Ma to discuss this issue tomorrow. He also feels that the best thing is Hospice to keep my husband comfortable. I hate this beast. I also feel I will always have doughts on the priognosis and if there was a leak or not.
Thank you all for all your support.
Helena

Stay on track
Helena,

My prayers are with you and i feel your pain. Just my 2 cents.
I would get DR. Enzinger the records he request as they are the experts in this area. Also, I would request confirmation in regards to the perforation. It sounds like there very well could be a perforation, and you have to explorer all options and prepare for the worse. Plus, based on your past experiences with the doctors in Springfield I wouldn't trust their opinions until i had a second opionion confirming what they said -- as clearly they are confused and unsure. Lastly, what is Dr. Podbielski's experience with this type of cancet.

Helena50 said:

Dr. Podbielski his a
Dr. Podbielski his a Thorasic surgeon. He was always very compasinate and wonderful throughout the surgery and after. He was there all of the time even on weekends when i needed to ask a question he actually gave me his cell#. I don't think I will have the answers except when there is an atopsy done after he is gone. My husband, Mario is his name doesn't want to go anywhere else he is giving up to weak to even try and wants to have his last days in peace.

Perforation Symptoms
Helena,

See below. If your husband has experienced any of this you should seek a second opinion immediately.

Symptoms
Perforation of the esophagus, stomach, or duodenum causes sudden severe pain, which may travel (radiate) to the shoulder. Because perforation of the small or large intestine often occurs during the course of another painful condition, and is sometimes walled off, symptoms may be less dramatic and can be mistaken for a worsening of the original problem. Typically caused by an esophagoscope, balloon dilator, or bougie (a thin cylinder-shaped instrument)

In all types of perforation, the person usually has nausea,and loss of appetite.


Helena, I understand it is easy to give up and i'm sure you and your husband have been through a lot and feel there is no hope of answers to be had. Although this is worth looking into.

Helena50 said:

Procedure findings
I am reading the PET scan report this is what it says.
Intense focus of FDG activity associated with mass in the upper central mesentery along the celiac axis as noted on prior CAT scan images. High density material centrally within this mass most consistent with prior barium extravasation. No evidence of FDG avid adenopathy or focal avid lesions in the liver or adrenal glands. Physiological activity noted in the remainder of the addomen and pelvis.

Physiological activity noted in the head and neck, chest and musculoskeletal structures.

Conclusion:
Persistent adnormal FDG activity associated with enlarging mass in the upper central mesentery most consistent with metastatic disease.

Can anyone explain this in simple terms?

Hmmm...
I'm certainly NOT a doctor, but it looks like the tumor is back and it has spread. I hope that I'm wrong, but metastasis means cancer has spread. Why didn't the docs explain this to you? I would have one of them thoroughly explain these results step by step.

Amjosmom said:

Hmmm...
I'm certainly NOT a doctor, but it looks like the tumor is back and it has spread. I hope that I'm wrong, but metastasis means cancer has spread. Why didn't the docs explain this to you? I would have one of them thoroughly explain these results step by step.

more information
Today I went to see the radiologist at Mercy Hospital where all the tests were completed. He was wonderful and explained and showed me the pictures from several different PET scans and CT scans. He is sure there is a perforation in the stomach that probably was caused by the tumor and believes the matter is contained in the middle of the tumor. He explained as the tumor grows the middle becomes a hole.It looks like some of the matter from barium swallow drained into this hole. We have an appointment Thursday at Mass General for a second look. I am hoping we have a Oncologist that can provide a more complete explanation.
This has been a Night mare.

paul61 said:

Wondering how things went today with the oncologist
Helena,

I was wondering how things went with Mario's appointment at the oncologists' today. I hope they had some recommendations for more effectively managing Mario's pain and what can be done to address the tumor. I am sure Mario is tired and demoralized at this point. I am sure you could use some rest as well. If they can find a way to effectively manage the pain things will be much easier for both of you. Perhaps they can consider approaches other than just oral medication.

Praying that you get some good news and some relief for Mario.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Went to see the oncologist
Went to see the oncologist at Mass General, he was very nice and very percise, explained everything very clear and I know now that we have done everything possible. It doesn't make it any easier to accept. He said that if Mario is up to some additional chemo that may reduce the pain. Mario does want to try more chemo in hopes that it will increase his life. I see my husband very week and confused sometimes he doesn't know what he says, other times he thinks he is seing people that are not here. But that is his wish to have more chemo so I will support him. The next option would be Hospise care. Within the last few days he has not have much pain he is sleeping all night and eating better. I don't know what all this means. The tumor is 5cm. The Doctor didn't think there is a perferotaion and if there is it would not make a difference because it is contained.
How long does someone live like this? I don't know how much more I can handle.
Thank you.

sandy1943 said:

EC is a beast. I am saddened
EC is a beast. I am saddened when there is nothing that can be done to ease the suffering. Hospice helps so many people-not just the patient, but the loved ones also.If the doctors think this would be the next step, don't hesitate, hospice can help so much with the transition that's taking place.
You and Mario are in my thoughs and prayers,
Sandra

Chemo again
Mario is going to start chemo again on Monday. It is his decision. I hope he can get some comfort or a better way of life. Right now it is not very good. I am hoping that by getting chemo outside the home will motivate him to start living a little. Thank you everyone for your support.

Helena50 said:

Chemo again
Mario is going to start chemo again on Monday. It is his decision. I hope he can get some comfort or a better way of life. Right now it is not very good. I am hoping that by getting chemo outside the home will motivate him to start living a little. Thank you everyone for your support.

No more suffering
My husband passed 12/7/12. He is in peace now. My last post.
Thank you for this site, it gave me the strengh I needed to make Mario's last months of his life happy and full of love.

Helena50 said:

No more suffering
My husband passed 12/7/12. He is in peace now. My last post.
Thank you for this site, it gave me the strengh I needed to make Mario's last months of his life happy and full of love.

So sorry! My prayers are
So sorry! My prayers are with you and the family,
Sandra