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Dr called not good

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
Well the dr called he did not say he talked to an actual tumor board but had talked to 2 of my drs and I got an upgrade or what I would call a definite downgrade if we are going by the mood I am in. The pathologists did another test on the lymph node and found cancer cells so now I am T3N1MO after starting out with what was described as a superficial in situ type. I was just adjusting to being Stage II. He said he would call me a Stage III. So if anyone out there wants to give me their survival story and how they did it, I am all ears. thanks!
Donna70

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

DONNA,

we are all survivors, please look at my posts from 7-23-09 on most of them i posted even though people responded, we were stage 2 and Kitten0385 was stage 3 i am sure she would be glad to talk to you. she is at Mayo tonight and tomorrow to get chemo though. If you want my story in full let me know

Lori aka moe

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Lori,
Kitten has responded to my topics. She has been very kind. It is just hard to make the mental adjustment of stage II then stage III in one day. Not just for me but for my family. At 65 I wonder if I should just try palliative treatment. That might just be the shock talking but it is hard to be told that it might be scooped or sucked out and go up to Stage III. Can't change it so know I must accept it and decide to fight it. thanks for your response, I will look up your other posts. I read them but can't remember much right now.
Donna70

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Bill
Well you have said a lot that encourages me. I am going to be open to all options. I do have experience with a lot of family members and as I have stated before, supported one of my best friends during her Stage IV lung cancer fight and she is now NED. I will listen to what the drs say. I am just going thru the shock phase. There is no denial here, I am pretty reality based. Love that Joyce Meyer and think that is the same version of one day at a time or as she says do the next thing. I call the oncology surgeon today and set up my appt. I would be happy to have a fanny pack instead of going every day, because while I can get some rides to the center every day will be a problem. My wonderful husband is 67 and was going to retire and now we desperately need his insurance which is so much better than Medicare supplementals. My only worry right now and I can't change it, was that the PET/CAT scan did not show how extensive my esophageal ca was, it lit up in a lot of other places so they have to be ruled out as positive sites. Glad to hear you did so well in your 60s with all the treatment. I have a lot of friends and family praying for me. It was a major miracle that the original gastro even biopsied the area for cancer. She told me she had no idea it was ca. And the dr who did my EUS said if he had done the EGD originally, he might not have biopsied that area either. Frankly, I believe God had something to do with it. thanks, Bill I really appreciate your words of encouragement. I could not go to sleep last night till I found some people who had survived the surgery and chemo etc and I did even find some Stage IV ones too.
thanks again.
Donna70

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Donna,

we had the fanny pack and it was no problem, it was much better than we thought. We made it through Chemo and surgery was a struggle but we did. You just hang tight you will get through this. If we did you can. Jeff had alot of problems after surgery so you can do it too. Take care

Lori aka moe

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Donna,

I don't think we've met. My husband Al is 61 and has stage IV EC. He has been on chemo on and off for 2 mos. We have 2 more treatments to go and the He will have another PET scan to see if his tumor has shrunk enough for him to have surgery.

We are extremly lucky that the only mets he has are right beside his esophagus in the lymphnodes. He had now mets to any other organs or to the lining of his abdomen. We are not survivors yet but hopefully we will be.

There are alot of Dr's out there that can help you and of course we do have William and he
can walk you through every step of the way. His posting have helped me alot and I know he is not a Dr. but he has actually gone through what we are going through.

There are some wonderful supportive people on this site and I thank GOD for them every day
and I know they are there and have been through what we are going through.

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

DON'T FORGET MOE!!!!!!!!!!!!!! SHE WALKED THE SHOES TOO!!!!!!!!!!

Donna, please hold your head high its not a easy bump as kitten says, but you can do this, when we first got the diagnosis we were devasted, luckly it had not went to lymph nodes or developed mets, when we started this journey in april, we didn't know what we was going to do i cried day and night, until i joined this site in May, i read and listened and talked alot to Kitten, but i will tell you I didn't like WILLIAM MARSHALL in the BEGINNING, he scared me, but as time went on him and his wife is my BEST FRIENDS!!!! i wouldn't of gotten through my husbands days of chemo, and surgery and post surgery without him, if I was down he had the words to cheer me up if i was scared he calmed my fears, if i needed to talk I just talked to him, and he just knew what i needed. Jeff did great on the surgery part, it was afterwards his lungs just didn't want to cooperate, he couldn't breathe on his own, he developed a HUGE sinus infection, and we just couldn't get him over the hump, i stayed at the hospital in ICU for 5 days and 5 nights not knowing wheather he was going to live or die, and believe me every patient around him was dying so it was pretty scary, then one morning I was sitting at home got a call from the hospital and he had his ventilator out and was asking for me I cried all the way to the hospital. I was so excited. When he was transferred to a room he had a hard time but we made it, he will be home 3 weeks tomorrow, and he has come so far, first week home he couldn't even bathe himself by himself or dress himself, and was able to eat except soft foods, then week two we were a little stronger and able to eat, and now we are on week 3 and he is doing almost everything on his own, except lifting and driving, and bending over, and we are eating whatever we want when we want just smaller portions.

After the surgery you can't lay in a bed flat or really even propped up, he tried again this morning to take a nap, but he said you get acid reflux real bad, and it starts coming up, so he will probably never been able to lay flat again, so it looks like we will be buying a new bed thats adjustable.

We go to our onocolgist this wednesday to see what our next steps are, but whatever they are i am sure we can handle, if we can handle the diagnosis of CANCER, we can handle anything.

Donna, I tried to give you detail by detail of what to expect and hopefully this will help you. If I can help further please let me know. I will be glad to help you.

ALSO, donna I have what you call "BIG GIRL PANTIES" which means you are a big girl now pull them up and keep going, when we were little we couldn't wait to become a big girl, so that is where i get my saying.

I wish you the best of luck and if you trust your doctors then go for it. We all have to make decisions we are not wanting to make but as Adults we have to make them, we don't get to ask our parents "mom what should I do" its hard but you can do this.

Hope this helps
Lori aka MOE

kitten0385's picture
kitten0385
Posts: 278
Joined: Apr 2009

Donna,
There are many paths along this life of ours, and right now you are on a very bumpy road. However, with that being said...you can fight this. I know it is hard to swallow a stage 3 diagnosis, when I went into surgery to have my esophagus removed I was under the impression the tumor had not infiltrated the walls of the esophagus, but in fact it had, was close to my pancreas and was in three lymph nodes. So, I came out of surgery as a stage 3, needing 6 months of chemo and radiation. I had a scan at the end of May that was clear, then last week things didn't look as good...there was fluid around all my organs that tested positive for tumor cells, but they were not yet attached to any organs. So, as I am typing this to you, I am receiving my first round of chemotherapy...taxotere and irinotecan. Donna, hold you head up high and know that you can do this. some side effects are rough, but there are usually meds that you can take to make them minimal. I have made it through this because of my supportive family, my loving husband, and all my wonderful friends on this site. Don't give up...look at it this way, you could have been a stage 4, but you're not...you can do this!! After some pre-op chemo and radiation, you could be a candidate for surgery...which is well worth it. With just a few minor adjustments to your eating and sleeping arrangements, your life goes back to pretty much normal. If you ever want to chat, please feel free to message or e-mail me. kitten0385@gmail.com

Cathy

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
Kitten, thanks so much for taking the time to respond. I appreciate your advice and everyone's, you all have been there or with the person you love. I just called it a bumpy road myself this morning or a journey you did not buy the ticket for. I really think this is a great resource for anyone who finds out that there is going to have to be a plan B. Kitten, I will be praying that you get a great response from the chemo. I want to thank all of you that have encouraged me to keep hope up, I will. I go to the cancer center at St. Joe's in Baltimore on Tuesday so my husband and I have decided to take a quick trip to Ocean City or Chincoteague just till Monday. I won't be looking up anything and will try to revitalize my spirits in a peaceful place. Enough of drs calling saying in situ and then Stage III. But I thank God I had drs that have helped and took the time to talk to me. I know I am lucky to live in a place where I can get excellent care and still have good health insurance. thanks again to all of you.
Donna70

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi
Don't know what I did but the gosh darned thing turned red??? Kitten thanks for responding and I am praying for you. I appreciate everyone's input and I will keep up hope. I go to the cancer place on Tuesday so my husband, Ron and I have decided to take a quick trip to Chincoteague or Ocean City just to get away before I face the treatment etc. Thanks for all of you encouraging me, I feel a lot better just reading all of your words of encouragement, it helps so much. Hope this red goes away??? will get back to you all when I know more after Tuesday. thanks again!!
Donna70

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

OKAY bill you need to read my reply to Donna, you will love it, I had to tell her how bad you scared me in the beginning but in the end you and Loretta are my best friends, you have to reember i am a survivor now so don't forget me to help, i am no longer an infant i am a "BIG GIRL"

THANKS WILLIAM
moe

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

but the celiac nodes resolved so we are currently stage 3...but because we once HAD the celiac nodes, they are concerned and fighting us on the surgery a bit. Our radiologist and oncologist are fighting for us though... and our oncologist told us that he has seen cases like Layne's effect a cure. Now cure is not a word used at MD Anderson for esophageal very often. So we are fighting hard for that surgery. No ifs ands or buts.

I have a good friend on another list who says often to remember you are a statistic of one. Every human is different. We all respond to treatments differently, to cancer differently, our bodies all have unique ways of acting. Your path will be your path and may not be the same as others. I know ours has not followed what I have seen elsewhere at all.

The best thing is to keep a positive attitude, keep your head down and in the game. Fight the fight for each day, and push on with an end goal in mind of beating EC. You won't do that today or tomorrow or in the next ten years maybe but one day... and you just keep the fight active.

There are a lot of state III folks who are still here ten and fifteen years later, NED. And really, if there is only ONE...why shouldn't your family be that one?

So keep your head in the game. Don't let bad news deter you. If we had done that, when Layne was given four months in Vegas...we would have just sat down and let that overwhelm us. And he would not be doing as well as he is now. So keep in the game. You can win a game you aren't playing hard to win.

:)

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

I want to thank all of you, each and everyone with your stories and struggles to help me get thru the initial shock and move forward. Betty I put all of you on my prayer list so I appreciate yours and everyones input. This means so much to hear what you have done and not been paralyzed by all this. Ron and I had a wonderful time in Chincoteague. Shed some tears, watching a beautiful sunrise and looking over the Channel there. But my soul was getting built back up by the peace of it all. Today the drs tell me what their Plan B is. My hope is we all make it out the other end of this crazy tunnel. thanks again, will post an update on what they say my treatment plan will be. thanks again to all of you!!
Donna70

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