newly diagnosed in Boston-- Allan-- age 67
Nothing is ever easy. We live an hour away from Boston, so we went to Dr Bueno, a thoracic surgeon at Brigham and Womens Hospital. He was reluctant to say that it was early, and wanted to get some scans, so Allan had a PET Scan of his body, an MRI of his head, and an endoscopic ultrasound of the actual tumor in the esophagus. My son was with him that day, because I thought these were just tests and that no results would be given until the follow-up appointment with Dr Bueno. I was wrong. My son called me to say that the doctor who had performed the EUS had told them that the tumor was all the way through the esophagus (stage 3 tumor)and that the PET scan showed hotspots in the liver, lymph nodes, and adrenal gland. The following Monday there was a blizzard so we didn't make it to our appointment with Dr Bueno for the results. One of the PAs released the results to Allan over the phone. It was very disappointing. Then we rescheduled for the following Monday, which is their only clinic day, so on the 3rd of January, Dr Bueno just said "you need to see an oncologist." He also ordered an MRI of the liver to confirm the Pet Scan results. After seeing the MRI, we were told that no biopsy was needed because the liver was much more involved than just a couple of hotspots. We were also told that surgery was not an option.
On Thursday, Jan 6th, we met with the oncologist at our local cancer center, Hudner Oncology at St Anne's hospital in Fall River. We met with Dr Richard Hellwig (chemo oncologist)and Dr Lee(radiation oncologist.) They said that the liver does not like to be radiated so that chemo was the only thing they could do. There was the first time they told us that the treatment would not produce a cure. It was hard to hear, and it was just starting to sink in a little. Allan is scheduled to start chemo on Jan 17th. They suggested 3 drugs, two of which are IV, Epirubicin and Oxaliplatin, and Capecitabine, an oral medication.
Today, Jan 10th we went to Dana Farber Cancer Institute in Boston, and had a second opinion with Dr Kimmie Ng. She reviewed all the scans, reports etc., and concurs with the treatment suggested by Dr Hellwig. Again, she said that there is no cure. While she said it was impossible to predict how long he will live, she did say that the average length of life with someone diagnosed in Stage 4 with metastasis to the liver who undergoes treatment was one year! That is stunning and unfathomable to me since Allan has no symptoms at all! I have been reading your postings here and hope to continue to receive support from all of you. I have no idea what will happen during the next few months. I am very very sad and basically in a state of shock. I question whether we would have been better off not knowing and waiting to find out until he got sick. Not that I would have control over this...
Believe it or not, my dad, who is 86 years old, had esophageal cancer 15 years ago, had his esophagectomy at Brigham and Womens, required no treatment, and is still alive. This past summer, he once again was diagnosed, this time with colon cancer; once again, he had a subtotal colectomy at Brigham and Womens, once again required no cancer treatment, and is still alive and healthy. It just doesn't seem fair that my Dad could dodge the bullet twice in a lifetime and now Allan can't seem to catch a break at all.
It is crazy knowing that someone I love will soon leave this world and that there is not a lot anyone can do to help him. I am trying to be there for him as he has been there for me all throughout our relationship. Whatever was happening with me, good or bad, he supported me totally, and I always had his loving support in all that I did. Now it is my turn to support him, and I will do whatever he needs. I don't know how I will do it, or what I will do, but I will do my very best to help him through all of whatever is coming his way. I am glad that I found this CSN because I know it is going to be very difficult for us.
Comments
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I'm so sorry
Pat,
I read this board daily, but seldom reply. However, for some reason your posting has touched me deeply.
I am so sorry for what you're going through, and for what inevitably lies ahead for you and Allan. Not sure what's going on in the Northeast recently, but there are far too many of my neighbors suddenly showing up here.
It certainly seems as though you've done everything right. Please know that you are now a member of a compassionate, knowledgeable family that will do everything possible to answer your questions and provide a big "virtual" shoulder for you to cry on.
You and Allan will be in my prayers. May God bless you.
Don
EC T1A 2/10
Rhode Island0 -
This comment has been removed by the Moderatorddub said:I'm so sorry
Pat,
I read this board daily, but seldom reply. However, for some reason your posting has touched me deeply.
I am so sorry for what you're going through, and for what inevitably lies ahead for you and Allan. Not sure what's going on in the Northeast recently, but there are far too many of my neighbors suddenly showing up here.
It certainly seems as though you've done everything right. Please know that you are now a member of a compassionate, knowledgeable family that will do everything possible to answer your questions and provide a big "virtual" shoulder for you to cry on.
You and Allan will be in my prayers. May God bless you.
Don
EC T1A 2/10
Rhode Island0 -
thanks for welcoming meunknown said:This comment has been removed by the Moderator
It is eerie right now because he has no symptoms. We are going to spend a night together on Cape Cod this weekend at one of our favorite places, and on Monday, Allan will start his chemotherapy. Neither one of us can believe he is sick and has been given such a grim prognosis at this point. I am just going to focus on living each day and not on dying. I am sure the disease will rear up and when it does, we will deal with it. I know he will get sick from the treatments, so we want to spend the weekend just being quiet in preparation for what is to happen. Thanks to you all for welcoming me.0 -
Thank you for your prayers and support.ddub said:I'm so sorry
Pat,
I read this board daily, but seldom reply. However, for some reason your posting has touched me deeply.
I am so sorry for what you're going through, and for what inevitably lies ahead for you and Allan. Not sure what's going on in the Northeast recently, but there are far too many of my neighbors suddenly showing up here.
It certainly seems as though you've done everything right. Please know that you are now a member of a compassionate, knowledgeable family that will do everything possible to answer your questions and provide a big "virtual" shoulder for you to cry on.
You and Allan will be in my prayers. May God bless you.
Don
EC T1A 2/10
Rhode Island
I appreciate all your prayers and offer of support. I am sure we will need it.0 -
Pat,
I am so sorry to hear
Pat,
I am so sorry to hear your news but please know you have found a place here where you can find answers to questions, support, inspiration and even vent on those days you don't think you can go on.
I am sure William will be posting one of his informative letters.
My 79 year old dad is the patient, he was diagnosed in Dec of 2009 T3N1M0, he had some setbacks and difficulties with the chemo and radiation and the cancer spread to his liver in June. He is now Stage IVb and inoperable. One thing I would urge you to do if you haven't already is to have Allan's tumor tested for the HER2 gene so you can determine if he is a candidate for Herceptin. Herceptin was approved by the FDA last fall for treatment in Esophageal Cancer --- it is a drug used in addition to other chemo drugs.
Also, it is critical that Allan stay hydrated - it will be difficult but if necessary ask for extra IV fluids, try to make sure he drinks as much as possible. Getting dehydrated is one of the real dangers of treatment and waiting too long to get fluids can be deadly. Make sure that even if he doesn't want to drink or won't ask for fluids you get him to the hospital or the doctor for fluids --- it can make all the difference. You don't want him to become debilitated because of dehydration.
Also, after you have done several rounds of chemo if they don't seem to work or the chemo is too hard on Allan there may be the option of checking into the possibility of a clinical trial. There is hope, there are ways to manage the cancer and remember you are a statistic of one. There are many on this board that have lived many months beyond what was expected, my father is one of them.
Ask questions, don't assume the doctors are always right. Make sure someone is with Allan at his appointments, keep notes and write down questions. This can be overwhelming at times but you will begin to get your bearings. I am pasting a message Sherri, our online expert, posted a while back - her husband Jim Stage IVb has been battling EC for over 19 months and has really fought the battle with courage.
Good luck and feel free to contact me anytime if you have a question.
Good luck,
Cindy
_____________________________________________________________________________________________
• http://csn.cancer.org/node/190270
"APRIL 15, 2010 - 6:29pm
FOR THE NEWLY DIAGNOSED
You are about to enter the roller coaster from hell. Unfortunately, you don't have time to feel sorry for yourselves. You must move on to fight the beast. Whether you are stage i or stage iv, only believe half of what is told and rely on your own knowledge of yourself or your loved one with the exception if you get a doctor who is upbeat and willing to go the extra mile for you. Remember whatever they tell you is statistical, clinical or factual and that they don't know you as an individual. Since coming on in June, Ihave read many stories where as the patient or the spouse is afraid to confront the doctors or to get a second or even a third opinion. I have also read where the caretaker is afraid to take control of the situation due to either fear or an uncooperative spouse or patient.
Remember to question everything and anything and if the doctor doesn't like this then find another. Remember that you are the patient and that they are working for you. Research everything and talk about it in your appointments. Never be frightened to ask questions. Even better is when you are with the onco staff, ask then whom I may call to get immediate answers.
Know your cancer! Look up where it may metastasize to and be one step ahead with questions or clinical trials. Don't hesitate to ask them about the HER2 gene and has my tumor been tested? Remember to ask about supplements that can help you while you are on chemo or radiation. Ours allowed us to do what we wanted, especially for chemo related neuropathy.
When you are first diagnosed, we sit their numbly, dumbfounded, afraid, intimidated, shell-shocked and can't believe what we are hearing. Well believe it quickly, take a few deep breaths and begin the fight. The ones that delay treatment are the ones that suffer in the long run. Don't dwell on i should haves or i could haves, it's too late for that. Get going on the cure or the treatment. You can still lead a productive life. Push yourself and do not give up hope. Ever!!! Only god knows when it is your time. Have faith in yourselves and know that you are not alone. We are here to answer your questions to the best of our ability. We have been through heartache. We have lost loved ones dear to us. We have cried together over someone we have never met. We are a family and you may not like what we have to say but we care and have the experience.
You will meet people here that have experienced it all. We have people that have been fighting for their lives all along but continue success. We have our not-a-surgical-candidate patients that have overcome their projected life spans and are doing well. We have people that have had the surgery and have been cured or are in remission. We have had many who have lost their loved ones but still come on to help others. They share their experiences without a second thought. Many give out their personal phone numbers to help some and others become great friends even though they have never met. Just remember that you are in the right place and you will get honest, experienced answers from people who have walked in the shoes of esophageal cancer.
Good luck and best wishes to all of you in your fight against esophageal cancer. There will always be someone here to answer your questions the best they know how to. Remember that we here have had success no matter how old you are. Our goal is to beat it now or in the future by helping others. You are never alone!
Sherri"
_________________________________________________________________0 -
Beginning the Mazeunknown said:This comment has been removed by the Moderator
My husband is 45 years old and is in the process of being diagnosed with EC. Already we have been going around and around. He was having trouble swallowing, and on Dec 16th we went for an endoscopy, where the gastroenterologist found a mass that had "cancerous characteristics". Went for a barium swallow the next day. Didn't hear from the doctor. Wasn't sure if it was due to the holidays. So finally spoke to him on Dec 29th, and he said the biopsy came back negative, but showing hyperplastic changes, and the barium swallow showed significant narrowing of the upper esophagus. He had us schedule an appt with a thorasic surgeon yesterday, Jan 11th. We show up at the surgeon's office, and he said that he had requested to the gastroenterologist that my husband have a 2nd endoscopy before the surgeon visit to get a better biopsy, because he said it's rare that the biopsy comes back negative
So...he scheduled my husband for a chemo dr. and radiation dr. for tomorrow. Not sure what they will do without the 2nd biopsy and definitive diagnosis, but we're going anyway (figure the more people we talk to the better)
When I called the gastroenterologist's office, the secretary said that he was waiting for the surgeon's report before scheduling the second biopsy?!?? The dr was supposed to call me last night...but didn't. And didn't call today either. Maybe he stayed home because of the blizzard we got...
Right now, I would just like to find someone that can help my husband eat...he's having so much difficulty.
I don't know where to begin to get answers. I still have that little ray of hope that it's something else. Any advice will be appreciated...thank you0 -
Pat
just wanted to tell you
Pat
just wanted to tell you to hang in there---we all know how hard this is. I am still amazed at how I could come to this discussion board and feel at home, but know no other "real" (vs virtual) person that had experienced Esophageal Cancer. I don't have lots of advice--just get to the biggest hospital that sees a lot of EC patients and I think teaching hospitals have access to more resources. Don't delay.
Have hope.
Enjoy each other.
Let this board support you when you need it.
God Bless you and Allen and keep posting.
Kim0 -
Chyenne WE need more info to helpChyenne25 said:Beginning the Maze
My husband is 45 years old and is in the process of being diagnosed with EC. Already we have been going around and around. He was having trouble swallowing, and on Dec 16th we went for an endoscopy, where the gastroenterologist found a mass that had "cancerous characteristics". Went for a barium swallow the next day. Didn't hear from the doctor. Wasn't sure if it was due to the holidays. So finally spoke to him on Dec 29th, and he said the biopsy came back negative, but showing hyperplastic changes, and the barium swallow showed significant narrowing of the upper esophagus. He had us schedule an appt with a thorasic surgeon yesterday, Jan 11th. We show up at the surgeon's office, and he said that he had requested to the gastroenterologist that my husband have a 2nd endoscopy before the surgeon visit to get a better biopsy, because he said it's rare that the biopsy comes back negative
So...he scheduled my husband for a chemo dr. and radiation dr. for tomorrow. Not sure what they will do without the 2nd biopsy and definitive diagnosis, but we're going anyway (figure the more people we talk to the better)
When I called the gastroenterologist's office, the secretary said that he was waiting for the surgeon's report before scheduling the second biopsy?!?? The dr was supposed to call me last night...but didn't. And didn't call today either. Maybe he stayed home because of the blizzard we got...
Right now, I would just like to find someone that can help my husband eat...he's having so much difficulty.
I don't know where to begin to get answers. I still have that little ray of hope that it's something else. Any advice will be appreciated...thank you
I feel your pain---but we need more info to help more effectively.
What part of the country are you in, what hospital are you going to? You need to go to a hospital that sees A LOT of EC patients, as they tend to be more effective and aggressive when needed. I am sure William and others will be more eloquent and helpful---I apologize that I am not more helpful --- but I know this board can help you---Blessings to you and your husband. We look forward to hear more from you.
Others out there---any others suggestions for Chyenne???
Kim0 -
Definitive diagnosisChyenne25 said:Beginning the Maze
My husband is 45 years old and is in the process of being diagnosed with EC. Already we have been going around and around. He was having trouble swallowing, and on Dec 16th we went for an endoscopy, where the gastroenterologist found a mass that had "cancerous characteristics". Went for a barium swallow the next day. Didn't hear from the doctor. Wasn't sure if it was due to the holidays. So finally spoke to him on Dec 29th, and he said the biopsy came back negative, but showing hyperplastic changes, and the barium swallow showed significant narrowing of the upper esophagus. He had us schedule an appt with a thorasic surgeon yesterday, Jan 11th. We show up at the surgeon's office, and he said that he had requested to the gastroenterologist that my husband have a 2nd endoscopy before the surgeon visit to get a better biopsy, because he said it's rare that the biopsy comes back negative
So...he scheduled my husband for a chemo dr. and radiation dr. for tomorrow. Not sure what they will do without the 2nd biopsy and definitive diagnosis, but we're going anyway (figure the more people we talk to the better)
When I called the gastroenterologist's office, the secretary said that he was waiting for the surgeon's report before scheduling the second biopsy?!?? The dr was supposed to call me last night...but didn't. And didn't call today either. Maybe he stayed home because of the blizzard we got...
Right now, I would just like to find someone that can help my husband eat...he's having so much difficulty.
I don't know where to begin to get answers. I still have that little ray of hope that it's something else. Any advice will be appreciated...thank you
Chyenne25,
I hope you will continue to provide a little info. I have also been diagnosed with a CT scan, but my biopsies have been normal. That is after 3 separate biopsies and another scheduled soon. I totally understand the frustration with waiting for appointments and phone calls. If you can offer any more info regarding your husband's similar situation, it may be helpful.0 -
Chyenne,I don't understandChyenne25 said:Beginning the Maze
My husband is 45 years old and is in the process of being diagnosed with EC. Already we have been going around and around. He was having trouble swallowing, and on Dec 16th we went for an endoscopy, where the gastroenterologist found a mass that had "cancerous characteristics". Went for a barium swallow the next day. Didn't hear from the doctor. Wasn't sure if it was due to the holidays. So finally spoke to him on Dec 29th, and he said the biopsy came back negative, but showing hyperplastic changes, and the barium swallow showed significant narrowing of the upper esophagus. He had us schedule an appt with a thorasic surgeon yesterday, Jan 11th. We show up at the surgeon's office, and he said that he had requested to the gastroenterologist that my husband have a 2nd endoscopy before the surgeon visit to get a better biopsy, because he said it's rare that the biopsy comes back negative
So...he scheduled my husband for a chemo dr. and radiation dr. for tomorrow. Not sure what they will do without the 2nd biopsy and definitive diagnosis, but we're going anyway (figure the more people we talk to the better)
When I called the gastroenterologist's office, the secretary said that he was waiting for the surgeon's report before scheduling the second biopsy?!?? The dr was supposed to call me last night...but didn't. And didn't call today either. Maybe he stayed home because of the blizzard we got...
Right now, I would just like to find someone that can help my husband eat...he's having so much difficulty.
I don't know where to begin to get answers. I still have that little ray of hope that it's something else. Any advice will be appreciated...thank you
Chyenne,I don't understand what is going on. I'm sure William will be on giving you some valuable information. Please respond with a seperate post, giving more information . Where do you live, and is he being seen at a cancer hospital? Sounds like they're moving way to slow. In the mean time, He must keep his strength up with nourishment. Drink ensure, carnation breakfast, and whey protein mixed with milk or juices. When I had a swallowing problem, I cooked as normal, but chopped my food up very fine. Still tasted the same- just a different texture. Sherri is our expert on nourishment.You will also probably be hearing from her.
Please answer with a new post. You've come to the right place to learn.
Prayers are with you both,
Sandra0 -
This comment has been removed by the Moderatorms said:Definitive diagnosis
Chyenne25,
I hope you will continue to provide a little info. I have also been diagnosed with a CT scan, but my biopsies have been normal. That is after 3 separate biopsies and another scheduled soon. I totally understand the frustration with waiting for appointments and phone calls. If you can offer any more info regarding your husband's similar situation, it may be helpful.0 -
Thanks for your repliesK_ann1015 said:Pat
just wanted to tell you
Pat
just wanted to tell you to hang in there---we all know how hard this is. I am still amazed at how I could come to this discussion board and feel at home, but know no other "real" (vs virtual) person that had experienced Esophageal Cancer. I don't have lots of advice--just get to the biggest hospital that sees a lot of EC patients and I think teaching hospitals have access to more resources. Don't delay.
Have hope.
Enjoy each other.
Let this board support you when you need it.
God Bless you and Allen and keep posting.
Kim
Thank you all for your replies. Pat and Allan, I didn't mean to butt in on your thread. I just joined the forum last night, and am un-familiar with the process. Should I start a new thread...or continue with this one, when you say "start a new post?" Good luck to everyone here. We meet with two doctors (chemo & radiation) today, and I will keep you updated. I appreciate your support and recommendations and hopefully I can find some strength here. Oh...and someone asked where I live...it's Rhode Island. I don't have the resources to fly around the country looking for treatment (and I also have to work) so I have to hope for the best locally.0 -
So Sorry
Dear Pat
Welcome to our ec discussion board and our csn family! We are happy to have you and your husband here. We are all in the same boat. I was a caregiver for my dad. He was dx with ec in 11/08. He was treated with radiation and chemo. He did well. Being stage IV he was not a candidate for surgery. 12/09 complained of massive pain in his right side, went for ultra sound...thinking gall stones. No....lesions on his liver. Admitted to hospital, have a blocked bile duct in the liver. Stent put in. Stent also put into his esohpagus to relieve blockage from scar tissue. Out of hospital just before Christmas, doing so so. 1/10 started oral chemo for liver cancer....not a good experience this time around. Had every side effect possible, had lots and lots of pain, had bad reaction to morphine....You have to know when enough is enough! Dad peacefully passed away in the arms of my mom at home, March 9,2010. This is a very hard, long, journey. You have done all the right things. Getting the 2nd opinion is one of the first things we suggest. They are right in telling you that this is not a cure, it is just prolonging his life. Dad lived for 16 months after his dx. The year to year and a half is pretty true. Sorry to be so honest, but this is how it goes. Just take it one day at a time. Go for the chemo treatments, see how it goes. Watch his quality of life closely. Quality outshines quanity. My dad had 13 good mos, and 3 horrible mos. Everyone is different. Listen to your gut feeling. Listen to what your husband wants. Respect his wishes. Live for today because you never know what tomorrow will bring. Tell eachother how much you care and love one another. You will be able to support him as he supported you. You have God on your side, go to him. Remember....Come to me all that travail and are heavy laden and I will refresh you. Know that we are all here for you. Come here often and keep us up to date.
Tina in Va0 -
Pat and Allan
When I was told I was stage IVB and incurable, I felt like I had fallen off a cliff. But I was immediately thrown a safety net by my oncologists. My doctors never once said I was terminally ill or that I had an average life expectancy of ___ months. They have consistently refused to talk in those terms. Instead, they insist that what we are dealing with is a chronic illness, incurable, but treatable, and manageable. No one knows for how long (as Jan -Oriontj- says, would you rather get hit by a bus?).
The thing that Allan has going for him is that he was diagnosed before he started having symptoms (so was I), and it sounds like he is in good health. His high performance status as he starts treatment can have a huge impact on his survival.
A friend of ours was treated in 2008 for stage IV colon cancer which had metastasized to the liver. In August 2010, he and my husband climbed the second highest mountain in the Oregon Cascades -- they did it in one day. I was diagnosed with stage IV EC on April 1, 2010. I'm getting ready to head off to the Caribbean for a 2 week vacation.
Life has forever changed for you and Allan, just like it did for me. But life goes on. Please don't despair. You and Allan have a lot of living yet to do.
Lu0 -
no need to apologizeChyenne25 said:Thanks for your replies
Thank you all for your replies. Pat and Allan, I didn't mean to butt in on your thread. I just joined the forum last night, and am un-familiar with the process. Should I start a new thread...or continue with this one, when you say "start a new post?" Good luck to everyone here. We meet with two doctors (chemo & radiation) today, and I will keep you updated. I appreciate your support and recommendations and hopefully I can find some strength here. Oh...and someone asked where I live...it's Rhode Island. I don't have the resources to fly around the country looking for treatment (and I also have to work) so I have to hope for the best locally.
We went to see Dr Kimmie Ng at Dana Farber. She gave us the straight info. It wasn't good news but I am glad to have the truth. I know RI is only an hour away from Dana Farber. Even for a quick second opinion/consultation, I think you should call them and make an appointment. We got one in just a couple of days. Once we knew that our local doctor was going to do what they recommended, we were all set to proceed with the chemo at home. I am not sure what doctors there are in RI because we are just over the border here in Somerset, MA.0 -
thank youCallaloo said:Pat and Allan
When I was told I was stage IVB and incurable, I felt like I had fallen off a cliff. But I was immediately thrown a safety net by my oncologists. My doctors never once said I was terminally ill or that I had an average life expectancy of ___ months. They have consistently refused to talk in those terms. Instead, they insist that what we are dealing with is a chronic illness, incurable, but treatable, and manageable. No one knows for how long (as Jan -Oriontj- says, would you rather get hit by a bus?).
The thing that Allan has going for him is that he was diagnosed before he started having symptoms (so was I), and it sounds like he is in good health. His high performance status as he starts treatment can have a huge impact on his survival.
A friend of ours was treated in 2008 for stage IV colon cancer which had metastasized to the liver. In August 2010, he and my husband climbed the second highest mountain in the Oregon Cascades -- they did it in one day. I was diagnosed with stage IV EC on April 1, 2010. I'm getting ready to head off to the Caribbean for a 2 week vacation.
Life has forever changed for you and Allan, just like it did for me. But life goes on. Please don't despair. You and Allan have a lot of living yet to do.
Lu
callaloo, your comment was very helpful to me, that is what we are planning to do, live every day instead of dying every day, it is true of all of us really, even those who do not have an illness. I have to work and that gives me some sadness because I wish I could be home with him. He has no symptoms now, and I am sure once chemo starts I will really want to be home. That will be so hard.0
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