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

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

Helena50

Welcome to our little EC family. I am moving your post to the top under a new topic so it will not be missed at the end of a string of posts.

You posted on Sun, 09/23/2012 - 5:35pm

Need Answers

My husband had stage one cancer three years ago. He had surgery to remove the esophogus and had his stomach streched to be his esophogus. After the first surgery he had an infection and had a second sergury a "C" cut in his back to clear the infection. After that he had a leak and was on a feeding toob for several months. His sergon than place a stent to block the leak and it worked. Two years later he started experincing pain in his lower back after meals. The Doctors did not seem to be concerned with this pain. He began to eat less and less because he was afraid of the pain returning. He went to see his oncologist last year and after a CT scan they found a tumor on the outside of the stomach where the first sergury and where the stomach was attached to the esophogus. They also did an endoscopy and nothing showed up. My husband went through chemo and radiation and was again on a feeding toob. This past February all the chemo was done and he started to feel better and even put on some weight. Three months ago he started having the same back pain and had endoscopy and pet scan and nothing showed up, doctors just perscribed narcotics for the pain. Nothing worked and the pain keeps on getting worst. His Doctors do not know what it is, he has lost weight down to 100 lbs his origional weight was 164 when all this started. He is in the Hospital since Thursday because he was getting very weak and allucinating. I don't know where to turn at this time and looking for any suggestion from anyone. I have no faith in Doctors at this time. Help me and my husband.

It certainly sounds like something is very wrong. If the tumor on the outside of his anastomosis, (the point where his resected stomach was attached to his remaining esophagus), was completely eradicated by the second series of chemotherapy then I would expect his symptoms to be eliminated.

It now sounds like the same symptoms are back again and the fact that they do not see anything with an endoscopy, and a PET scan shows no unusual uptake in the area, seems to rule out a recurrence. It would seem that your husband's doctors should be looking at other tests to define what the problem might be.

I am certainly not a medical professional, but I would be asking:

1. Has a whole body CT scan been done to see if any physical abnormalities show up?
2. Is there anything in your husbands blood tests or organ function tests that is abnormal?
3. Is it possible to do a minimally invasive keyhole surgery to survey the area?

It also seems that they should be able to do a better job of pain management with medications other than, or in addition to, narcotics.

It sounds like you have questions about the competency of your husband's current medical team, perhaps it is time to get a second opinion from a major medical center that specializes in esophageal cancer. If you tell us where you are located we can suggest the nearest major center where your husband could get help from medical teams that are specialists in the treatment of esophageal cancer.

Where is your husband being treated now?

If you can give us a bit more information we are certainly here to help you.

Best Regards,

Paul Adams
Grand Blanc, Michigan

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!

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Paul, Glad you moved the post up, so that we wouldn't miss it.
Helena50
I don't have any more info to add to what Paul has said. I will add that I agree with Paul, that maybe it is time to get a second opinion.
I will be thinking and praying for your husband,
Sandra

Helena50
Posts: 20
Joined: Aug 2009

Thank you so very much. We are located in the Springfield Mass area. My husband is at Mercy Hospital. I appreciate any suggestions or recomendations.

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

I know Boston is a bit of a drive from Springfield, but I and another member of this board both had our surgeries at Mass General, by Dr. Christopher Morse who is a wonderful, EC-experienced surgeon and a great guy. I’ve also heard good things about Dr. Raphael Bueno at Brigham and Women’s Hospital in Boston, who is also experienced with esophagectomies. Personally, I would make the drive because there’s a ton of experience with EC in Boston.

Good luck.

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

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Donna70
Posts: 920
Joined: Aug 2009

Hoping this is not the case, but wanted to say sometimes the scans do not show the cancer or the Pet scan does not show uptake and you can still have cancer. My original PET scan when I was first dx'd did not show the 4 cm tumor or the positive node only the EUS showed the cancer after the positive biopsy after the original EGD. So hope the drs will try harder to see as Paul says what the problem is, you have to be persistent and insist that as they can see, your husband is getting worse and there must be a reason. So hoping they will find an answer for you and your hubby. take care,
Donna70

Helena50
Posts: 20
Joined: Aug 2009

Donna,What is EUS and EGD? I am not familiar with these terms.

Thank you,

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

Helena,

An EGD is an "Esophagogastroduodenoscopy"; it is an examination of the esophagus, stomach, and and first part of the small intestine. It is done with a small camera (flexible endoscope) that is inserted down the throat. A small extension to the device also allows the doctor to take biopsies for later pathological examination.

An EUS is Endoscopic ultrasound. (EUS) is a procedure used to image the digestive tract, including the pancreas. A thin, flexible, lighted tube with a small ultrasound probe attached to the end (echoendoscope) is passed through the patient’s mouth into the stomach and the top part of the small intestine called the duodenum. The ultrasound component of the endoscope uses sound waves to create visual images of the pancreas.

In diagnosing and staging esophageal cancer; the initial diagnosis is usually done with an EGD. Then an EUS is typically done later along with a CT or PET scan to establish the extent the tumor has penetrated the layers of the esophagus and to look elsewhere in the body for potential cancer involvement.

Both EGD and EUS are endoscopic examinations but the EUS provides more detailed information for cancer staging.

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!

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

There are two NCI certified cancer centers in Massachusetts. They are:

Dana-Farber/ Harvard Cancer Center
Dana-Farber Cancer Institute
Edward J. Benz, Jr., M.D.
Director

450 Brookline Avenue
Mailstop: BP332A
Boston, Massachusetts 02115
Tel: (617) 632-2100
Fax: (617) 632-4452

And

David H. Koch Institute for Integrative Cancer Research at MIT
Massachusetts Institute of Technology
Tyler Jacks, Ph.D.
Director

77 Massachusetts Avenue, 76-158
Cambridge, Massachusetts 02139
Tel: (617) 324-3533
Fax: (6170 324-2238

I have heard good things about Dana Farber perhaps you could request that your husband's case be evaluated by someone there. It looks like both of them are about the same distance from you.

Best Regards,

Paul Adams
Grand Blanc, Michigan

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!

Helena50
Posts: 20
Joined: Aug 2009

My husband is still in the Hospital. Today the performed a nerve block near the Anastomosis. We have been asigned a Pallative Doctor that has been wonderful. He told me today that there is a small leak in the Anastomosis. Has anyone on this board ever heard of this? The surgeon sugested to leave it alone, but I am requesting a second opinion.
Thank you for all your support.

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

I have heard of small leaks in the anastomosis but typically shortly after surgery not this long after surgery. If the surgeon wants to "leave it alone" is it his expectation that it will heal on it's own?

I would certainly look for a second opinion on this one and not from a general thoracic surgeon but from a surgeon experienced in doing esophagectomies. It is great that they are making progress though, at least they understand the source of the pain. I assume the hallucinations were a side effect of the pain medication

If they suggest a stent to cover the leak please come back here to discuss experiences with stents.

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!

Helena50
Posts: 20
Joined: Aug 2009

My husband was released yesterday from the hospital. The doctors said that they can not do anything else for him. They are still not sure if he has a leak or the tumor is back. This week he will have a PET scan. Either situation is not good. He can not have surgery again thats not an option. Maybe chemo. I am hoping for the best. I just need answers. The doctors tell me that this is a very complex situation. After the PET scan I am planning to take him to Mass General for a second opinion.
Paul, you have been a great support and I truly appreciate all your recomendations and words of wisdom.

Helena Ferreira
wife of Mario that is suffering.

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Helena, I am so glad you are seeking the second opinion. If it is complex, the doctors should be able to explain it to you. When a doctor says that's all we can do,it doesn't mean there's not a doctor that isn't more knowledgeble,

Good luck, Sandra

NLMCEM
Posts: 52
Joined: Aug 2010

Helena you wrote, "After the PET scan I am planning to take him to Mass General for a second opinion."

This is wonderful news that you are going to get the second opinion.

Ask them for a copy of the Pet Scan (I recommend you ask for all test cd's and reports EVERY time) We get Nino's sent to both his local doctors also. He has a primary doctor and he also has his sent to his VA doctor. This way they have a better understanding when Nino comes in for a check up if he is having any new problems and they can compare the test.

EC Fighter Caregiver,
Carolyn

ShellyMac
Posts: 18
Joined: Jun 2012

If traveling to Boston isn't out of the question for you, Dr. Raphael Bueno at Brigham & Women's hospital is phenomenal. He performed my Esophagectomy last January and I trust him with my life! He can come across as being "quick and to the point" but he knows what he is doing.

Good luck to you and please keep us posted on your progress.

God Bless!

Shelly

Helena50
Posts: 20
Joined: Aug 2009

We have an appointment with Dana Farber with Doctor Peter Enzinger next Friday 10/12/12.
Yesterday my husband was in lots of pain again. Didn't want to eat, had a hard time moving standing. I don't know what else to do. He needs to be an out patient for 4 days to have a PET scan done otherwise I would take him back to the Hospital. He is taking Delaudid 5 MG every 4 hours and Fentanyl patch 125mcg.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

You shouldn't wait with him in pain. Can you call the doc and ask them to up the pain meds? Maybe ask for morphine or oxycontin. Where is he experiencing his pain?

This list was composed by several members of this board. Hopefully, it may help.

Suggestions For Pain Relief
Gabapentin (neurotin) bone mets
Dexamethasone, bone mets...good appetite producer
Adderall, great for energy booster, and focus, especially for
Stage ivs
Ritalin works too
Jtube, godsend for nutrition, and hydration
Oxycontin, for general pain
Oxycodone, breakthrough pain
Tramadol, pain relief
Dilaudid for pain, short acting
Morphine, better manages overall pain, not as loopy as the oxy's
And helps with breathing issues and mets to the lungs.
Please note some people may be resistant and have to
Drugs to what works best to manage the pain.
Intercoastal nerve block, for pain in vertebrate or ribs
Ativan, calms nerves, but helps with swallowing too, helps with breathing
Emend, great anti nausea drug...my opinion, works the best
Zofran, anti nausea, close second
Lorazapam, heavy hitter for nausea
Compezine, nausea..didn't work for jim
Magic mouth wash, for thrush...happens all the time...look at their
Tongues for white patches...will give the nausea
Antibiotic melt tabs, thrush
Baking soda and water, thrush, baking soda and sakt rinse
5 times per day.
Therespheres, mets to liver
Ginger supplements, helps with nausea a lot
immodium, diarrhea
Vegetable laxatives, for constipation...must be taken with all
Narcotics
Tincture of opium for diarrhea
Fish oil, weight gain, works wonders...high epa, dha
Iv hydration, saline but better is lactated ringers
Exercise, push yourself...walk, walk and walk...use hand grips
Try ec stretch before stent...stent should be last resort.
To keep away neuropathy, bvitamins
Easy foods to go down...high carbs...easy to digest, will make you
Hungrier sooner....kraft mac and cheese...chinese lomein, etc
Fruit smoothies with whey protein...add two scoops of whey
To blender, add frozen fruit, yogurt, ice cream, milk or cream,
Flax seed oil
Loosely scrambled eggs, with cheese, bacon bits, salsa, etc...
Panera soups, cream of anything
Best friend, pressure cooker!...pulvarize soups...chicken, beef, add veggies,
Whey protein, cream, and if needed, strain
In beginning stages, stay away from sugar...new stage iv...empty
Calories...will make you full quickly. Diabetic ice cream...
Herbal tea, smoothe move, walgreens.
L lysine during radiation and chemo to help with mouth sores

Don't be intimidated by hospice...they help manage the pain better
Then anyone else and will butt out if you don't want them to be there.
Best meds, delivered at your door, free of charge

ptom
Posts: 33
Joined: Jun 2012

Ativan is the brand name for Lorazepam (generic). L lysine is good (herbal) but Zovirax (prescription) works much better for mouth sores.

ptom

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

I borrowed this list from a friend, but I will edit it with these changes. Thanks for the input.

Helena50
Posts: 20
Joined: Aug 2009

Thank you for this information. His pain is in his lower back.He sits on the sofa crunched over all day and most of the night. He is taking 6 mg of Dilaudid. Has tried oxy's and other pain meds they only work for a short time.We are starting with Pallative care today. He is not eating or drinking much. He needs fluids so the I.V. will help with hydration and I will ask for morphine
I'm always wondering if he is dying. Is this what people go through when they die of this cancer. It is so hard to deal. He gets frustrated with me when I suggest anything for example: food,fluids and even other positions to try to keep him comfortable.
Currently taking: Dexamethasone, Ritalin, Ativan & Lorazapan.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

If the docs are not efficiently managing his pain, then I suggest calling in hospice. They are excellent in pain management, free of charge and can get him a recliner that is more comfortable and easier for him to get up and down. That's what I would do, if it were up to me.

Best wishes, Helena.

Helena50
Posts: 20
Joined: Aug 2009

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

MACMAN1234
Posts: 3
Joined: Oct 2012

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
Posts: 20
Joined: Aug 2009

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.

MACMAN1234
Posts: 3
Joined: Oct 2012

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
Posts: 20
Joined: Aug 2009

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?

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

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.

Helena50
Posts: 20
Joined: Aug 2009

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.

Helena50
Posts: 20
Joined: Aug 2009

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's picture
paul61
Posts: 1106
Joined: Apr 2010

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!

Helena50
Posts: 20
Joined: Aug 2009

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's picture
sandy1943
Posts: 883
Joined: Jun 2010

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

Helena50
Posts: 20
Joined: Aug 2009

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
Posts: 20
Joined: Aug 2009

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.

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

Helena,

I am sorry to hear that Mario has left us, but I know that he was tired and suffering at the end. Having to live with constant back pain and the ongoing effects of chemotherapy was difficult I am sure. He was very fortunate to have a loving advocate like you at his side during him final journey with cancer.

With my deepest condolences,

Paul Adams,
McCormick, South Carolina

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

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

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

My deepest condolences for you and your family.

~Jayme

Helena50
Posts: 20
Joined: Aug 2009

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.

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