Went to one of my Drs. yesterday. The news is rather confusing.
By writersedge
@writersedge (22563)
United States
September 16, 2011 1:36pm CST
For those of you who don't know, I had 4 founds of 4 chemos. Then took a month off and had a bunch of operations all at one time. Bladder removed, 18 lymph nodes removed, rt ovary removed. Part of my colon cut out, flipped over made into a new bladder, colon sewed back together.
3 of the lymph nodes came back positive for cancer. I've been taking that in stride.
Well the Doctor put it this way. There are many possibilities here:
I.The Surgeon might have gotten all the cancer. It's very small and microscopic. I may be cured.
II. The Surgeon might not have gotten it all. In which case:
1. You can do two more rounds of chemo. But we don't know if it will:
a. stop you from ever getting cancer again,
b. delay you from getting cancer, or
c. do nothing and you will get cancer again soon.
The Doctor said that even if you get the chemo, we don't know if you don't get it again if you were cured already or if the chemo cured it.
I thought the chemo was supposed to cure it in the first place. I thought the operation was supposed to cure it in the first place.
I may be cured. I may not be. That's the way it is anyway. No matter what.
The Doctor said if it was him, he'd do the chemo. I did very well the first time. Well the first time wasn't after an operation I'm not even healed up from. It took 7 days for me to be able to do anything for myself and 3 days more for me to be independent. I still can't bend over well. I can't do kicks, spins or turns at T'ai Chi class.
I have two weeks to decide. Then the preventative chemo is off the table.
I want to go back to my life. I just started being able to cath once every 5 hours during the day and every 6 at night. I started out every 2 hours every day and every 3 hours every night. I was sooo tired, didn't get much sleep and I did not have a life at first. I can only do so much and then I have to rest. I was hoping to build up the time between naps so I could subsitute teach. Due to hurricane Irene, pictures for subs were delayed and I can go next week to have my picture taken. I want my life back. The pictures would have normally been when I was recooperating from the operation, but there was probably a funding lapse.
If I go do chemo now, I have to start over again. Chemo took half of my energy. This operation, I only have half my energy. Where do they think I'm going to get the energy from to do chemo when I haven't even recouperated from the operation yet? I do something and then rest. I do something and then rest. When I had chemo, I did chemo and rested.
The 4 chemos were supposed to be so rough that many people couldn't endure them. They said it could knock a healthy, athletic person in his or her twenties to their knees. I would do the chemo, walk to Hope Lodge, sleep, eat supper and sleep again. They had to break up the chemo to two days and then give me neulasta on a third day. So 3 days every other week, I had that. So they want two rounds, another month. I did two months of chemo before and now two months for this operation.
I had expected them to tell me when I could go back to work. Instead, I got al this. I won't to live my life. I don't want to "chase cancer."
3 people like this
8 responses
@hardworkinggurl (37062)
• United States
16 Sep 11
Hi writersedge! 
Oh my it does sound very overwhelming and sadly you are living it. After reading all this and please bare with me because it is easier for me, a someone who is not going through it to say what I would do. Versus a person, as yourself who is living it as to what I would do.
From what I read it sounds like that if you do the chemo there is better hope, however doing the chemo means you will be completely exhausted and still on the not sure stage. But then I read if you do nothing then it is almost like a for sure the cancer can come back.
I conclude my friend that although and as hard as it sounds, you can't just not do nothing. Any chances the cancer does regrow/come back it will be far worse then the chemo treatment. Do take a few days and think about this carefully, you have a life to live my friend and not doing anything means there is really not life later on. Trying perhaps is best then not and do forgive me as again, I am not undergoing this and can only feel your confusion and pain. Writersedge is a fighter and although she will be down for a few more weeks/month she does want to live. Remember this while making your decision.
Oh my it does sound very overwhelming and sadly you are living it. After reading all this and please bare with me because it is easier for me, a someone who is not going through it to say what I would do. Versus a person, as yourself who is living it as to what I would do.
From what I read it sounds like that if you do the chemo there is better hope, however doing the chemo means you will be completely exhausted and still on the not sure stage. But then I read if you do nothing then it is almost like a for sure the cancer can come back.
I conclude my friend that although and as hard as it sounds, you can't just not do nothing. Any chances the cancer does regrow/come back it will be far worse then the chemo treatment. Do take a few days and think about this carefully, you have a life to live my friend and not doing anything means there is really not life later on. Trying perhaps is best then not and do forgive me as again, I am not undergoing this and can only feel your confusion and pain. Writersedge is a fighter and although she will be down for a few more weeks/month she does want to live. Remember this while making your decision. 1 person likes this
@hardworkinggurl (37062)
• United States
16 Sep 11
I re-read it a third time and the more I read it the more confused I am getting. So I can only imagine you very frustrated, as it is way too much for you and or anyone to have undergone. I then arrive at maybe you do not need the chemo and or maybe proceeding with chemo does not guarantee it won't come back. This has to be difficult for doctors as well as it sounds like they do not have an answer.
Did the doctor say it would be beneficial to tart chemo right away and or if there is anyway they can give you a few weeks before you have to start it? Maybe not making a decision right away would allow you to recuperate a bit more.
I do recall you saying about your mother and times are a bit different these days. I do agree that other methods may certainly be beneficial as I am all for prayer as I trust my praying whole heartedly. Is there any support group that perhaps could share with you similar types of their situations which may shed a little more light to it.
I will definitely continue to pray writeredge so that this whole situation for you can be cleared and or at least give you more hope.
@writersedge (22563)
• United States
17 Sep 11
Yes, it is confusing.
Yes, I think the Drs. were frustrated, too.
No, they said I have to decide in two weeks or they won't do preventive chemo.
I know of many healing groups and praying groups. Thank you very much. I do hope your prayers work.
@GardenGerty (169591)
• United States
17 Sep 11
I would not presume to tell you what to do. I have only had one family member with serious cancer. She was younger than you, healthier than you, and her HMO would not hear of the type of chemo you are being offered. If they had, she could still be alive, I think. She was a fighter. On the other hand, I know how hard some of the chemo was that she did get. The point I am making is that she was treated each time, and then her insurance refused treatment until the cancer would come back full blown in another place, in another form. She wanted to survive, and sue the pants off the HMO. It did not happen. Recovery from anything can just drag on. I am thankful that you were able to get as much treatment as you did and I would talk this over with hubby if I were you.
1 person likes this
@writersedge (22563)
• United States
17 Sep 11
He said he would support whatever decision I made.
I'm sorry her HMO was so stupid. I'm sorry for your loss. To loose a friend because of such stupidity is very hard.
@peavey (16936)
• United States
16 Sep 11
I truly sympathize with you. I had cancer surgery earlier this year, although not as extensive as yours. I opted out of chemotherapy after doing a lot of research. I have kidney disease and there is a fifty/fifty chance that chemo will affect your kidneys. The rate of kidney failure after chemo is not included in their "survival rate," which is either 5 or 10 years, depending on what criteria they use. I don't want to frighten you, but chemotherapy has killed people. They use the term "not strong enough" for those who die while under chemo.
Personally, I think you should do some in depth research before deciding. A very healthy lifestyle, weight loss, lots of antioxidants and a positive attitude can go a long way to keeping you cancer free.
1 person likes this
@writersedge (22563)
• United States
16 Sep 11
My kidneys and liver slowed down during the first rounds of chemo. I'm still recovering from the operation. I saw them almost kill several people with their chemo.
I'm glad you understand. Thanks and take care.
1 person likes this
@carmelanirel (20942)
• United States
16 Sep 11
I'd love to give you more hugs writer, but I can only give three..:'(
I am so sorry you are going through this, and what a decision to make, to get chemo or risk the cancer coming back. I hate that word, and I have heard about some people who come through it, and I hope and pray you are one of them. This kind of decision is one made with lots of prayer and I pray that you make the right choice, because only G♥d knows what it best...@writersedge (22563)
• United States
17 Sep 11
Actually, getting chemo doesn't guarantee it won't come back.
I may be cured. They may have gotten it all.
The chemo may delay it and only give me time.
The chemo may cure it.
The chemo may do nothing and I die anyway.
1 person likes this
@writersedge (22563)
• United States
17 Sep 11
With chemo, 30% chance of living. Without chemo 20% chance.
1 person likes this
@carmelanirel (20942)
• United States
17 Sep 11
Yes, I know chemo is no guarantee, just a method to slow it down and give you a better chance..But I can't help wonder, if you are already so weak, why don't they wait until you are stronger, why the strict deadline?
@emjay86 (640)
• Philippines
16 Sep 11
What you are going through right now is mighty tough. I highly applaud for being tougher than the sickness. You decide on your course of action and somehow, when things go awry, people do it for you. This time, you are being made to choose something else. A boggling choice indeed because the uncertainty of healing goes along with it. Indeed, you are chasing cancer. Somewhere along the way with all the ups and downs, you lost living your own life. In your family's perspective, I understand because their aim is for you to live longer. I simply wish you and your family and everyone those concerned meet halfway and arrange matters amenable by all. God bless you and your choices. I pray for your healing and living. :)
@writersedge (22563)
• United States
17 Sep 11
You seem to understand the dilemma well. Thank you for your prayers. I need them. Peace and love to you, also.
@cowgirl03051979 (918)
• United States
17 Sep 11
the stuff that doctors say is ususlly very confusing and they usually tell you like there is nothing to it and with little to no emotion as if the news they are giving you is not going to affect the rest of your life (no offense to doctos i thank you for all the lives you do save) but hmm im not sure what you should do i have heard that kemo is very painful and not always effective in removing cancer i feel for you as it sounds like between all the worrying and stress and just tiredness from not knowing what to do you do not have a life and that is not fair for everyone deserves a life why do you just have two weeks to decide on the kemo then that offer is gone?
@writersedge (22563)
• United States
17 Sep 11
Because the cancer is supposed to be fast moving. After about 3 or 4 weeks, it may be all through me.
@JoyfulOne (6231)
• United States
16 Sep 11
Hi writersedge. Wow, you've sure been through a lot, and I can sure understand the frustration that can come with having all this new stuff to deal with! I had cancer about 9 years ago. I had 2 different types of cancer in one organ, and did the surgeries, chemos and radiations. My dr at the time, had made kind of similar statements. What I think it boils down to is that they cannot know for 100% sure if each and every cancer cell was removed with the surgery. They can take, and test, what they see, and what they remove, but if it's in lymph there's no positive way of knowing if it's gotten anywhere else. Chemo doesn't always kill it all, of course it usually does, but nothing is 100% for sure when dealing with cancer cells that can't be seen with the naked eye.
It sounds like the dr is giving you an honest 'we don't know' type answer. Since he did reccommend that he would go with the chemo, then as hard as it might be, maybe it'll give you the chance you need to conquer it all. If I may ask, is he an oncologist? I know that not all surgeons who deal with cancers are specialists in that field. I'm thinking that you should ask him if he'd be offended if you sought out a second opinion from an oncologist who specializes in your particular type of cancer so that he can help you form your decision and give you more opinion on it. I am not saying your dr is not good, just that when I went through all mine, my dr (a specialist oncologist for my types of cancers) had some other oncologists in on a second opinion just to make sure that the options he chose were the best. As far as work goes, maybe the school can let you tutor from home so you can get some extra income. At least that way you wouldn't have to travel, and you could be somewhat comfortable. Whatever you decide, I am keeping you in my thoughts and prayers for a successful outcome of it all. Blessings and a giant hug from Joy
@writersedge (22563)
• United States
16 Sep 11
No, I can't tutor from home. Our schools here don't work that way. You go to the student's home to tutor. My surgeon is not an oncologist, but the Dr. who spoke to me is. They're an integrated team and they all talk to each other.
I'm only half what I was due to the surgery. The chemo took everything I had before the surgery and they gave me a month to recover before the surgery. Now I've had the surgery. I don't have it to give, period.
I've seen them almost kill people with chemo. People who didn't have it to give. I have nothing left to give.
@a_year_older (636)
• Malaysia
17 Sep 11
Wow. You have been through a really tough time with the chemo.
The problem with cancer is that there is never a definite confirmation that the cancer is gone and will not come again. That is why all cancers come with a 5-year survival rate. Meaning that if after 5 years, no part of your body is found to have cancer then you probably only have 1% chance of having cancer again.
Cancer that has spread to your lymph nodes means that it has entered your circulation system. This means that the cancer may have spread elsewhere in your body but it is still in it's baby stages so it cannot be detected as yet. The chemo is to help kill off any possible baby cancers from growing.
In the end, the choice is in your hands though. If you feel you do not have the energy to go through a chemotherapy again, then you are quite welcome to refuse. It is entirely your choice. The doctor will still help you with your recovery whatever choice you make.
@a_year_older (636)
• Malaysia
18 Sep 11
Oh dear. Does cancer run in your family?
I can understand why the doctor would encourage you to go for chemotherapy if it does. He probably wants to minimize the possibility of any recurring cancers as much as possible.
