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Thinking about stopping Chemo Treatment

Michaela25
Posts: 3
Joined: Jul 2010

Hi I am a 38 year old from Australia and would love some feedback. I have secondary cancer in both of my lungs (8 tumours); my primary cancer was endometrial cancer five years ago.

I was told that I would need three rounds of chemo which I have finished. I have had a CT scan; one tumour is gone and the other seven are greatly reduced. Great news but I have been told I will need another three rounds of chemo.

My doctor has told me that I can't kill this thing but there is a 60% chance it will go into remission. I don't want it to go into remission, I want it GONE. I don't want to have to worry when it will pop its ugly head up again.

I have taken a couple of weeks off from treatment and I feel great and happy from the first time in months; but I am booked into have another treatment in two weeks and I don't want to do it. But how do you tell your familiy that you are not going to have chemo anymore and let the cancer take it's course? I feel so bad thinking this way when there are people out there who have been diagnosed with terminal cancer and would love the chances I have. I have all the support you could ask for from family, nursing staff, doctors and friends but I want a permanent end to this cancer.

My heart is breaking. Has anyone else had this dilemma?

Kind regards Michaela

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

The decision to continue has to be yours alone. My husband passed away from colon cancer eight months ago after a six year battle. He chose to fight and buy as much time as possible. I told him I would support him if and when he chose to stop. It was his body and his decision. Yet, I am forever thankful that his choice was to fight. I hated seeing him sick and in pain, but during the good times we made wonderful memories. We celebrated many family blessings such as the birth of a new grandchild and sons' job promotions. We took two of our granddaughters on trips with us. We went to Hawaii for the first time. We went to the beach and to Yosemite. We laughed together and cried together. We held hands and said I love you often. Those are just a few of the reason he wanted to fight. He wanted to be with us, not just for him, but for us. I can't even begin to tell you what that time meant to me. He was very brave. He hated needles. He had never really been sick before. He got really tired of being sick and tired, but he fought on. I would have supported him had he made a different choice. Our sons felt the same way. We would not of loved him any less. We all saw him struggle. However, our 40 year old son said he got to know his dad better in those six years than in all the other years. Holidays became more special because we all knew each Christmas, Thanksgiving, etc. could be our last together. I don't know you or your situation other than what you have written. I just want you to understand that, although this is your life and your decision, it will affect those left behind and all of you may miss out on some wonderful memories. Don't make a decision yet. Don't cancel that appointment. Don't box yourself in. Every time Doug was facing a new round of chemo, he hated it. It is always hard to go back knowing how you will feel. Be sure that you are not just depressed. You might even benefit from some meds or counseling. Talk with your dr about it. Tell him how you are feeling. Sometimes, drs are so busy treating the physical they forget about the emotional health of the patient. If after exploring all your options, you still want to stop treatment, you have that right. I'll be think of you and your family. Fay

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

Chemo is torture, but with the possibility of remission, be sure about your decisions.

I did stop chemo early, but I had been told that they'd never know if the chemo had an effect or not, regardless of if and when the cancer comes back. With a rare cancer, my chemo was a best guess with unknown effects

However, if the chemo is known to be effective against your tumor type, it might be worth struggling through a few more cycles. You will feel well again after it's done.

If I had known that the chemo was likely to be effective, I would have struggled through a few more cycles, but since the chemo was of questionable value in the first place, it wasn't worth the pain it was causing.

Please think very carefully about your decision, and know that while remission may only be temporary, not having the chemo may assure your cancer's return. This is a decision only you can make. I know my husband was very careful when I was weighing the pros and cons of my chemo; he wanted to be sure my choice was my own.

By the way, I had 2 types of chemo - the first (intraperitoneal) was known to be beneficial for my cancer type (and may have cured me), but the drs stopped it early due to side effects. I was willing to go through more cycles, despite the blinding pain. The systemic chemo, however, was having major side effects with no known benefits. That one I chose to discontinue.

terato's picture
terato
Posts: 384
Joined: Apr 2002

But, my oncologist said, "We're not interested in temporary remission, we're going for CURE!" So I stuck with the protocol for another year, concluding combination chemo in April of 1982. Next month I will celebrate my 59th birthday!

Of course, it's your decision. I can only say that I am happy with the one I made, thanks to my doctor!

Love and Courage!

Rick

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi Michaela and welcome. You are so young, only 38 years old! You have so much more of life to live. The tumors have shrunk, and with another round of chemo they could be gone and in remission! Please do not play the "what if" game with yourself. Go for it! Fight this cancer. You give up now, and this cancer will win. You do not want that! Come on...reconsider...you have the rest of your life to live! Hope this helps you make the right decision. But...it is your decision in the end. Keep in touch.
Tina

damama24
Posts: 175
Joined: Nov 2009

Michaela I understand your feelings. I find myself asking myself the same questions. I have stage IV colon cancer and have been in treatment 10 months and have at least that many more months ahead of me. My drs say that I am inoperable so I ask myself what is the point. If they can't get rid of the cancer why go through all the chemo torture to just exist. Thats how I feel right now, I just exist. I can't work any longer and see no real future. I know my family wants me to fight and they are supportive but I feel alone in this battle. The thought of being on chemo for the rest of my life is very depressing and at times to me to be pointless. But your drs have at least given you a chance to get rid of the cancer so please take that into consideration when making your decision. I just wanted you to know that you are not alone in your feelings. I pray that you make the best decision for you. Blessings to you and your family. Deb

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

My husband had E.C. They found it Jan 2009 by May 1 2009 he completed Chemo and Radaition seven weeks of it. Then Dec they noticed something on his nudules but said don't worry, Feb they said to small then May they found 7 tumors on his lungs. They said that he could have a year with out treatment 2 with. This first round of Chemo make him so sick.All I could do was try to make is easier for him . Wednesday we go for the second.
Now I believe in anything is possible. He never smoked or drank. So who is to say that this treatment or the next will not stop the tumors? Who is to say it will? Doctors can be so right and on the money as we say, but they can also be wrong. As long as my husband keeps fighting this battle I am with him. If he decided to stop I am still with him. As long as he knows how much I love and need him.
What you said about the tumors (reducing) sound promsing to me.My husband would be happy with a 60% chance . We just keep trying and I know it is not easy He is scared as I am to . You just never know what is behind the next door.Take one day at a time. Find something that makes you happy and hold that in your thoughts when times get bad. Try anything but don't give up.
Please think this out before you decide, go talk to someone who can listen.

ms.sunshine
Posts: 710
Joined: Mar 2010

I'm confused how is stopping chemo and letting the cancer take its course going to make it go away? If 3 rounds greatly reduced the tumor then 3 more rounds may kill it, and it will be gone. Doing nothing certainly isn't going to make it disappear.I went thru 10 chemo treatments, and yeah everytime wanted to quit. But quitting wasn't an option. You have to persevere and get thru this. Tell yourself, "I can, I must, I will !!" Please give this alot of thought.

The doctors told me the chemo was going to shrink the tumor, then they could do surgery. After chemo I had a pet scan and the cancer was gone.
Wishing you the best.
Jennifer

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I should have told you I have a rare genetic birth defect, it caused my left side to have tumors we are talking about 100's of tumors, I was told that I would never gt married (no one wants a cripple But my husband found me 38 years ago and we have been married 36 years) I was told I would never have Children (I have two beautiful adult children that I gave birth to.in 1999 I have had 37 surgeries for many reasons, non to make me Beautiful. In 1999 I was told from a M.R.I , I made cancer sarcoma I believe it what they called it, the basiclly kissed me off. I Went home and cried. My husband said go see the family doctor . So we did Dr Wendling sent me to the Mayo took a few weeks to get into but that few weeks I thought I would die. So I have some idea as how you feel, after a week of test they found that I did not have cancer (but keep in mind that the tumors I have can turn cancer. So the though is with me always. Fast forward to 2007 I again had a M.R.I. and again was told I had cancer. A Trip to Ann Arbor the doctors there looked at the test and said We Do not think it is cancer, but it it is there is nothing we can do for you. What I have has spread into around and all over my stomach. SO I live each day as if it was just another day. I have lived and I have loved and I have given my love. I am not afraid to die. But I remeber the fear it put into me to have a doctor say that. But he is not god or who ever you believe in.
My heart breaks for you because I know as I watch my wonderful husband. Cause deep inside I don't want his to suffer. I would gladly trade places with him in a heart beat.
I think you need to live each day as best as you can , love your family and friends. If you have no hope for your self give it to them. But in the end the choose is yours. You know there are so many people who could look up to you . Please Think about it before it is to late. I beg you please don't give up. I don't even know you but I care.

Michaela25
Posts: 3
Joined: Jul 2010

I just wanted to thank everyone for their comments, suggestions and best wishes. I have read and thought about what everyone has said.

Have I made a decision? No. Logically it makes sense to keep going with the treatment; it's working and I have a great support system but...........I still can't help but feel the need to make sure this thing doesn't come back and chemo is only going to give me a reprieve not a cure.

I wish you all well and thank you all once again for your views.

Kind regards Michaela

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi Michalela and thank you for your recent post. You are most welcome, that is what we are here for. You have to live for today. Do not think and think and think and worry about the cancer coming back. It may, it may not. Get that next round of chemo and get it in remission, and move on. And so what if it does come back, you know how to fight it and beat it! God bless you and give you peace at this time. We are thinking and praying for you.
Tina

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My rare form of endometrial cancer was diagnosed in fall of 2008 and I was told that we had to be VERY aggressive, because, if it came back, there was almost no chance of a cure. So I had debulking surgery, 6 rounds of chemo, and 33 rounds of radiation that put me into remission. Unfortunately my cancer came back after 5 months. But another 10 rounds of weekly taxol chemo and the cancer disappeared again, and I had a 4 1/2 month break from chemo before the cancer returned for the 3rd time. So, for this recurrence thus far, I've had 3 rounds of weekly taxol, with plans for more chemo every Monday for at least the rest of the summer.

Sounds awful? Perhaps. But it HASN'T been awful!! Even in TREATMENT you can have a good quality of life. Even with no CURE on the horizon, life is GOOD and worth fighting for! Maybe chemo is harder on you than on me, but my oncologists keep my quality of life on the forefront of their decisions about treatment. My chemo is 'fractionated' (i.e., the dose is broken up into smaller increments but given more frequently) so that it causes me no pain, no nausea, no side effects at all other than baldness and some fatigue. Even in treatment, I am able to run my business and go out to dinner with my friends and splash around in my pool with the grandkids. And those brief remissions??: I went to Greece and Turkey and Rome during my 1st remission! I went on a Caribean cruise on my 2nd remission! And any time I want, I can take a week off of chemo to make a spontaneous trip! (I just came back from a week at the beach with 10 members of my extended family!) LIFE IS GOOD! EVEN IN TREATMENT!

I respect your decision, truly. I know that some day, sooner than I want it, I will be making a similar decision. But I wouldn't want you to throw in the towel too soon. If you can get into remission, then a break from chemo is certainly a safe and prudent choice. And who's to say that your next remission won't last YEARS?! The DAY I next get a clear CT/PET scan I will cease chemo for at least 3 months. And I've already decided to take a couple months off of treatment over the Christmas holidays. But please talk to your oncologists about a more tolerable chemo for you, one that won't make you sick. Life can be good, even on chemo. It can be WONDERFUL! And I know that I will probably be in treatment most of the rest of my shortened life. And, as long as chemo doesn't make me feel lousy all the time, I can do that. (((((Michaela))))

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