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Sad to find myself here

SyaJ26
Posts: 4
Joined: Sep 2012

Last week we found out the cause of my mothers swallowing problems is because of a tumor in her esophagus. She has had trouble swallowing for months and finally after much debate and practically forcing and a stay at the hospital mom finally got herself to a doctor. They did xrays and saw that there was a blockage in her esophagus followed by a scope and biopsy indicating it was in fact a cancerous tumor. Then it was the PET scan. The scan revealed the cancer has infact spread, stomach, liver, nodes. The doctors said she has less than a year and that she is not a candidate for surgery and did not recommend chemo because it would disrupt the quality of life she has left and they would start radiation treatment to try and shrink the tumors. My mom is 63 years young and little to say my small family is devastated. We are trying not to think of the negatives and trying to spend as much time with my mom as we can while trying to give her every reason to fight this ***** we call Cancer. She just welcomed her fourth grandchild on Friday that was bittersweet but made naming her after my mom just that more special. My other sister has taken off full force in getting my mom to completely change her diet and quit smoking, that has been the biggest battle for my mom to stop smoking, she's been doing it for 40+years...(any recommendations on how to help her through this?) we have cut out all sugar and started mom on various health supplements. They are doing a form of detox and started juicing just yesterday. Mom's other struggle as I'm sure many of you know is finding a way to eat. She is just so hungry...and mom when she is hungry and not smoking is very very difficult to be around sometimes. I try to stay patient and distract her away from her urges but I couldn't imagine being that hungry and not being able to eat.
Any advice anyone can give would be greatly appreciated, on how to help her through quitting smoking and any suggestions on what else we can do.

monica_sss
Posts: 57
Joined: Dec 2011

My Mom had similar symptoms, difficulty with getting food to "pass down"...as she said. She would get the hiccups often but didn't think much of it. She was dx at Stage III and fortunately had surgery in April.

You will find a great deal of support here from caretakers, and those dx'd with all stages of this beast. Some folks opt for the j-tube, and that provides a lot of comfort with the overwhelming feelings of hunger. My mom had a TPN bag via a PICC line, but that didn't provide her stomach much relief from the hunger sensations, it only provided nutrition.

Other folks can speak more to Stage IV chemo and radiation options. My Mother was a lifelong smoker too, we decided not to plead with her to stop. As it turns out, the chemo made her lose a taste for nicotine anyway.

I'm so sorry that you're family has been affected by this awful cancer. Despite that, Mom can still live fulfilling days. Check in as you can, lots of friendly voices and wise words around here.

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

My dad is also Stage IV with mets to the liver and bone. He is not a smoker, but he is inoperable. He was offered radiation and chemo simultaneously. That was in 2010. He was only given about 4 months to live, but obviously has overcome that hurdle. He changed his diet completely and is taking a million supplements daily. It has helped him tremendously. Have you offered your mom the patch? Sounds simple, but it may work. I have a friend that quit using an electric cigarette. It provided her the habit without the harsh chemicals. I'm curious who your mom is seeing. Have you had any other opinions about treatment? She should get at least 2 opinions before ruling out any treatment specifically. Anyway, I'm sorry you had to find us, but I'm glad you did!! Please PM me if you feel the need.

Best wishes.
~Jayme

SyaJ26
Posts: 4
Joined: Sep 2012

We haven’t gone the patch route I need to research it more to find out about the chemicals involved. Right now we are trying to do everything organic and natural. The Electronic cigarettes are a concession by my sister. I think by ripping out sugar from my mom’s life she is already not happy and then to take away the other thing that made her happy will just make her give up the fight and we can’t allow that. She goes back and forth between what’s the point of fighting this if I can’t live my life how I want to, and I’m going to fight this so I can be alive. I think it is her coping but sure makes it difficult to be the recipient of.

We haven’t gotten another opinion. I’m not even sure how to do that, or if Mom will even want to go through all of that again with a different medical team. She is on Medicare and I’m not sure how flexible they are on getting second opinions and it’s nothing that we can pay for out of pocket. I want to get a second opinion it seemed like this medical team really didn’t provide for a lot of hope of her surviving past the year. I don’t know if this is common, but they immediately went to just making her comfortable and providing information on Hospice. My mom doesn’t understand what all the hype is about because she feels fine, a little tired but then again, who wouldn’t be if you haven’t been able to eat a solid meal in over 5 months. I know we have a long road ahead of us and I’m anxious to start treatments and work on getting her better but the doctors are taking their time to set up her appointment for radiation.

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

My mom also is stage IV but they told her just the opposite; no radiation only chemo as treatment. My mom has a J-tube which provides nutrition and I recommend you lobby the doctors for one. It is basically a feeding tube that connects to a pump that runs at night with bags of liquid nutrition. The plus about a feeding tube is that you can also use it for medicine and hydration. She still eats during the day but it is a struggle. The other day we took her to restaurant and she kept repeating, "I can eat, I can eat...." tying to psyche herself up. It's so sad, something she used to enjoy has been stolen away. So we can relate to your mom's situation.

My mom doesn't smoke, but at the cancer center I did meet a lung cancer patient and he had one of those electronic cigarettes and he was pretty enthusiastic about it. I think people who have smoked for so long not only have the nicotine craving but the tactile habit of holding the cigarette as well so this helps with both of those. You may want to look into it if you haven't already.

I wish you and your mom the best and keep us posted on how she is doing!

Stephanie

SyaJ26
Posts: 4
Joined: Sep 2012

My mom has such a hard time accepting the fact that she can not eat, and then spends the next half hour violently throwing up in the bathroom. She will eat things she knows will not go down and has resorted to chewing and spitting out. We are still in the earliest stages and it has been a whirlwind of appointments and emotions. It started on a Friday her xrays, then Monday results, tuesday biopsy, Thursday Results then the scan and the results a few days later, this has all happened in the last two weeks and we are all scrambling to get our heads around all of it. I am glad I found this place it gives me hope to read about other people going through similar experiences.

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

There seems to be a little haste happening with the docs. Steph is right. Ask the docs for a J-tube. You can get a second opinion by sending the medical records to another doc. I wish I knew what to say, but I'm still fairly new at this... Stage IV doesn't mean the end, it just means we fight harder!

P.S. If they mention "stent," do your research!! Many will agree, it's not a great option.

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

I dealt with frustration of docs moving slow too, and yes steer clear of the stent if they suggest it and instead ask about an esophageal stretch. I know you are all hurting and overwhelmed. Take it one day at a time. I gotta tell you, when we first found out I felt like I was in the twilight zone just numb with shock and fear. But as you begin to care for her your focus shifts. Anytime you get scans there is a ton of anxiety and for me the results threw me right back into the twilight zone again. But with the help and support I found here, I have been able to cope and provide the best care possible for my mom. You have a refuge here and we all share a bond of love and support that soothes and heals us and helps us take care of our loved ones.

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

When my Dad was going through a stage of being unable to eat solids, we would buy cans of soup and puree them for him. My mom would add asparagus and spinach to them. We found some soups that were organic and sugar free, and my mom would make her own concoctions when he got bored of the same old stuff. If she doesn't have blood pressure issues, she can use alcohol free Stevia. My Dad drinks a lot of iced teas with a drop or two of stevia. There are many HEALTHY ways to get your sweet on without using sugar... BELIEVE ME, my dad has found them!

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

My mom (83) was told she was inoperable due to it's location. They recommended radiation only. After a 2nd opinion re treatment from a private cancer researcher, the docs agreed to his recommendation of low dose, continuous drip chemo (5FU). The rads bothered her more than the chemo. They also inserted a G-tube for feeding which she didn't need at first, but was dependent on it later.

Get a second opinion on a course of treatment if you can. I can tell you that her tumor shrunk considerable with the rads. We were going to go to another round of chemo (erbitux sp?), when mom said - enough.

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

I am sorry you find yourself here and that your Mom is having difficulties. I am a bit surprised that at 63 they are not recommending any chemotherapy unless your mother has other significant health issues. Radiation therapy may shrink the tumor and therefore reduce the blockage that is interfering with your Mom’s ability to eat.

I would recommend that you discuss an alternate feeding mechanism with your mother’s doctors. The approach that most survivors and caretakers here have found works best in typical cases is called a Jejunostomy Tube or “J-Tube”.

Click Here to read a description of how a “J-Tube” works

You may wish to discuss an approach to help your mother quit smoking you her doctors as well. Of course there are the typical patches or electronic cigarette options, but your mother’s doctors may have some ideas of medication based intervention that may be of assistance.

I am sure your mother is very frightened at this point. She really needs the support of the family while she comes to terms with what is happening in her life right now. Your may find her a bit short tempered from time to time as she tries to process all the changes to her life. When that happens, patience and love is the best medicine.

It sounds like your whole family is ready to support your mother and that is very valuable. She is lucky to have you as an advocate at this difficult time.

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!

jaycc
Posts: 130
Joined: Jul 2012

So sorry you are here. Its alot coming at you and the family all at once. It is very good of you to be patient with your mom. Vent here, I found it helped with the hard days.

Similar to another, we were told Chemo only and no radiation. EC is very specialized and even more specialized for mets to Liver. So really try to get a second opinion. I can send you an address for medical record , no appointment needed, second opinion if you like, when you are ready.
Doctors really don't know how long Stage IV EC people have. As you will hear from others, they are going beyond what the doctors estimated.

Your mom will have fears, and it will be hard for her to tell you, but let her know its alright to tell you so you can help her.

Ensure helped my husband for awhile with hunger and the sense of eating. But don't really on that alone for her nutrition.

SyaJ26
Posts: 4
Joined: Sep 2012

Thank you for your kind words and advice. My mom said that the doctors told her that the Cancer is so far advanced that Chemo would only disrupt her quality of life and basically not help her. I can't believe that there is no hope for her. They are really just trying to make her comfortable. If you can't tell I am not a fan of her medical team. I don't think they realize that Cancer has attacked the wrong family. We are fighters and are going to fight this. I wasn't there when they gave the results of the PET scan but from everything I've been told the doctors do not seem that committed to helping my mom which is frustrating. I will look into the J-Tube. Mom can swallow liquids and some foods though so that may be a little premature. My sister has her on a specific diet right now a form of detox and mom just wants food and lots of it.

We are supposed to get the call from her doctors today to set up radiation I'm just really shocked and annoyed it's taking so long, they spent several days before giving the results of the PET scan they should have already had the next appointment ready to be set up.

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

May I suggest getting another opinion... like YESTERDAY?!! I don't understand why doctors do this! Find a doc who will do what your mom wants. It's HER body and HER decision! I realize this must be so frustrating. There are docs who will HELP her... find someone who SPECIALIZES in EC. Don't give up... there is ALWAYS hope!!!

~Jayme

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

When we were offered palliative chemo, we were advised there are four types off responses to chemo, and everyone is different. We were told that my mom's life could be prolonged depending on how she responds. I've listed the types the oncologist shared below.

1 complete response
2 partial response
3 no change
4 progression of disease

I am surprised to hear that no palliative chemo is offered at all just to see how she responds. In my mom's case, she initially had partial response but now has progression of the disease and she is still offered chemo. She's been on it for so long that the side effects are causing problems, but those cumulative effects took a long time to show up. She's been on chemo non-stop since February. I think a second opinion is a good idea to weigh all the options.

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

How's Mom? Hope all is well. Do you have a FB? It may be easier to communicate there.

Freida
Posts: 191
Joined: Nov 2011

I agree with all the suggestions to seek a second opinion and fast. We were unimpressed with the first oncologist my husband had and as soon as we left the office and got in the car I said "we're going somewhere else". Our family doctor completely agreed and when I asked her what she would do if it was her she said "I wouldn't stay local for this type of cancer, you need someone who specializes".

You need a major cancer center that has a lot of experience with esophageal cancer. Which one will depend on where you live. We ended up at M D Anderson in Houston which is a 600 mile drive. My husband is also on medicare, and we had no problem at all as far as being allowed to get a second opinion. He also has the plan F supplementary policy which was a boon as far as paying for treatment.

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