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Choices about treatment

jtrue
Posts: 9
Joined: Feb 2019

Hi,

I'm new here. My mom was diagnosed with stage 3b rectal cancer about a week ago. She's been in the hospital for three weeks now as they did tests and a colostomy. They're recommending aggressive chemo and radiation (chemo continuously by pump and radiaion 5 days/week for 6 weeks) to shrink the tumor. After that they might be able to do surgery to remove what's left of the tumor.

My mom is 73 and she thinks she would suffer more with the chemo/radiation than she would without. She feels like she's lived a long life and doesn't need to prolong her life. She only wants to be kept comfortable. She might consider radiation, but the doctors say that won't be very effective on its own. She's not sick enough to need hospice yet, and we don't know how long she might live like this. She's already in pain because a large tumor is pressing on her bladder. She also has very limited financial resources for care.

The oncologist wants her to decide soon whether she will have treatment, and I was wondering if anyone has anything to share about their (or their loved ones') quality of life if they didn't have chemo. The oncologist gave a couple of examples of what could happen, but he didn't say how long it could go on if she doesn't get the chemo. I know everyone's situation is different, but I'd like to be able to give my mom some more examples of what might happen to help her make a decision.

Thank you!

Tunadog's picture
Tunadog
Posts: 232
Joined: Mar 2017

Chemo/ Radiation was not bad for me. The radiation shrunk my tumor and was painless.

I’ve had a Lower Anterior Resection to remove my tumor and a Colostomy.

I then had Oxiliplatin and Xeloda as my primary chemotherapy. This was the worst.

I’m on maintenance chemo now.

Good Luck with any decision she makes.

jtrue
Posts: 9
Joined: Feb 2019

Thank you! I’m glad to here the chemo/radiation wasn’t bad for you. I will pass on your comments to my mom.

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Perhaps you could get your Mom to consider starting treatments, and if it becomes too much for her she can always stop.

I know you want more time for your Mom but ultimately the choice is hers.

Marie who loves kitties

jtrue
Posts: 9
Joined: Feb 2019

Thank you, we did discuss this option. My family will support my mom with whatever decision she makes. We want to minimize her suffering however we can.

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

Im willing to try but sometimes I do think about how much suffering you have to go through with chemotherapy. And you start to think of quality of life over quantity. But if they can give you enough medication to mitigate the side effects and adjust your treatment to you specific need I think it is worth the try for at least one cycle. 

jtrue
Posts: 9
Joined: Feb 2019

Thank you, my mom will appreciate knowing that she’s not alone in questioning whether the treatment is worth it. I will pass on your comments to her, and I wish you the best with what you‘ee going through, too.

Trubrit's picture
Trubrit
Posts: 4831
Joined: Jan 2013

My experience with raditation was 100% worse than chemo, and that wasn't a walk in the park; but you want to know something? I am alive and thriving, and about to hit FIVE years with No Evidence of Disease - NED - and as hard as it all was, it was worth it to me, because I am alive, beating the odds, and loving every minute of every day. 

There is no predicting how one person is going to react to chemo and radiation. You could be like me, and suffer. You could be like Tunadog and not have it bad.  Its a roll of the dice. Its the luck of the cards, only your mum can make the decision and Manapart, only you.  Is your life worth several months of possible Hell?  Its your call. 

How wonderful, jtrue, for you to come searching for information for your mum. She is blessed to have you by her side. 

There are some big decisions in front of you. I wish your mum the best, and I wish you the best as well. 

So, my testimony, it was sheer Hell at times, but I am so very, very grateful I stuck it out and I'm living proof that you can live with Stage IV. 

Tru

jtrue
Posts: 9
Joined: Feb 2019

Thank you, this is great news that you are five years with NED! And thanks for the feedback on radiation. I haven‘t found much yet on side effects of radiation. The oncologist said it could cause irritation to bladder, etc., but he was vague.

 

Trubrit's picture
Trubrit
Posts: 4831
Joined: Jan 2013

Some people do not want to know, others do.  I am happy to share, because I think, being prepared for what might happen, is important.

I was blessed enough to have a member on the forum send a PM with warnings about how bad it could get. If I had not have been told, I think it would have been a real shock.

I suffered incredible pain with radiation.  It felt like I was having a baby, but it went on and on and on, day after day, week after week and seemingly month after month, but it was probably only three monts. It was exhausting. 

The external burns broke out into sores and wept constantly. I could not wear underwear.  

I also had a feeling that to this day I cannot explain. I couldn't bare to have ANYTHING touching my skin from the waist down - including my legs. If I had to wear clothes, I would have them ripped off the moment I walked through the door.  In fact, as I rememebr this, I can almost feel it again.  I still have problems with underwear because of this, and love the summer's - when I can wear skirts and dresses and go commando. 

Fatigue is also a common side effect of radiation.

As I mentioned before, side effects this sever do not happen all of the time; others here can testify to that. 

I do so wish your mum well, and hope that she takes a stab at treatment. She may have many wonderful years of life ahead of her, so it is defintiely worth serious thought. Its worth the side effects in my opinoin, but that is just me. 

Tru

 

 

jtrue
Posts: 9
Joined: Feb 2019

Thank you so much for sharing the details. I know some people don’t want to know, but my mom does really want to know and this is really helpful. I think she might give I a try, but we’ll see. Thank you for your support.

Twinzma
Posts: 211
Joined: Jan 2018

The first question I asked the cancer team was how much time my husband would have if he didn't do treatment. The thoughts of him, being so sick and having little quality of life for what remaining time he had was just too much. When they said 6 months at best, he opted to try it. I am so glad he did. He has not had the ill effects we had thought would happen. Somehow we have this image in our heads of bald shells of a person sick as can be and it scares the daylights out of us. But in reality, treatment isn't like this at all for so many people. No it's not a walk in the park, being in that chair but he has been doing amazingly well for 15 months. He eats, travels, works and still plays hard. He does tire easier that he once had but that's it and if you look at him, you would never know he was fighting for his life. 

Your Mom could try treatment and stop if she has ill effects. Now as far as not doing treatment that road is not easy either. My Grandmother was stage 4 when they found her colon cancer. She did very well for about 4 months then pain set in and she couldn't sleep, then she stopped her activities. The doctor had prescribed sleeping pills, and she fell and hit her head. She was in a coma for 6 months before she passed. My Aunt just passed from Uterine cancer and up until the last 30 days she needed no pain pills but was very weak and refused hospice care, she wasted away though. Couldn't eat for months, was 70 pounds at death.

If she denies treatment I would still opt to have hospice get involved sooner than later. There is a lot more to hospice than just the care they give the patients, it is a wonderful support for family members as well. Whatever she decides to do, she is in my prayers as well as you. It's not easy caring for our parents and you have your work cut out for you. Hugs! 

jtrue
Posts: 9
Joined: Feb 2019

Thank you, this is information I’ve had trouble finding. Few people talk about what it’s like to not have treatment, and that’s really important for my mom to know, too. She wanted me to tell you she appreciates what you’ve shared.

I’ve had experience with hospice for my father-in-law and we will definitely go that route if it comes to that. Thank you!

SandiaBuddy's picture
SandiaBuddy
Posts: 879
Joined: Apr 2017

From my perspective, it is important that your mother get the most comprehensive information available, and then make her own choices.  Anecdotal evidence is always suspect, but for what it is worth, a friend's Mother in her late 80's was diagnosed with stage 4 colon cancer and given just months to live.  She was put on hospice.  Her eligibility for hospice expired.  That was more than five years ago.  Eventually, the doctors concluded her cancer was no longer active.  She recently passed on from other causes.  Scientific studies are probably the best guide, but you never know how things will turn out.  I think it is important to respect your mother's informed choices.

jtrue
Posts: 9
Joined: Feb 2019

Yes, thank you. I’ve heard about people surviving for a long time, like your friend’s mother. There’s no way to know what will happen. We definitely will respect my mom’s decision and we’re not trying to steer her in a particular direction. The first oncologist she met didn‘t want to discuss the possibility of her refusing treatment, so she’s having trouble getting the information she needs to make a choice. We’re looking for a second opinion. In the meantime, she appreciates hearing about the wide variety of people’s experiences, both good and bad. I’ve been reading all the comments to her so she can take it all in.

SandiaBuddy's picture
SandiaBuddy
Posts: 879
Joined: Apr 2017

If my doctor was unwilling to discuss the possibility of no treatment (something I considered carefully) I think I would look for another doctor.

TerryGibbons's picture
TerryGibbons
Posts: 13
Joined: Mar 2018

I had the same as your Mother. 2 years since i found out ihad Bowol cancer,what a shock. I am in the Public Hospital here in New Zealand went through Tablet Chemo every day combined with Radiation for 5 and a half weeks to shrink the pest. 

Waited 12 weeks for op to remove it and at the same time had a liostomy bag fitted wich stayed with me 10 months. Reversal done September last year. Went on to Folfox 5, 12 cycles finished end of june last year. 

Have had my ups and downs ,Neuropathy still annoying but i feel so happy im still alive. The odds of not doing anything are not that good  Take care of Mum and yourself. I am looking after my mum now ,she is nearly 99. 

My CEA is now 1.6 and i have a colonoscopy tomorrow. I am 73 in June

Annabelle41415's picture
Annabelle41415
Posts: 6185
Joined: Feb 2009

Your mom is still young and she can get through this.  Also, I'm sorry to hear of her diagnosis but she has a lot more life to live.  Danker was diagnosed at an elderly age too on this board and he is here posting 10 years later.  Tell her not to give up.  Of course, it's her decision, but tell her not to give up just yet.  Wishing her the best.

Kim

Butt's picture
Butt
Posts: 299
Joined: May 2018

With stage 3 I definitely would go for the whole package treatments. 

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

Lots of ways to look at it, chemo on the whole adds percentage points to survivals rates, but when you read on it, it suprises how small the added percentage is. I'd still try, as I did, since if it shrinks the tumor your mom should get some comfort right there and she doesn't know how chemo might effect her at all. I worked through mine, and the side effects were annoying but minor. If a thing doesn't work or hurts too much you can always stop it, but it's, of course,your mom's call, I hope she finds comfort and peace whichever way she chooses.............................................Dave 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I had chemo and radiation before my surgery to shrink the tumour. I found that the worst part was fatigue and that was about it. I had a bottle of chemo attached to me so it was pumpng continuously, it was 5FU and the radiation didn't bother me at all. Then I had surgery. That's coming up on 5 years ago now. If they thought she had no hope they wouldn't do anything, they'd just make her comfortable.

My mom was about the same age when she was diagnosed with liver cancer but it had spread terribly and there was nothing they could do. She was glad because she was so scared of the treatments. It's sad when someone feels that way. If you let it get you it's going to be rougher than the treatments are so I think it's better to suffer (if you do) for life than for death. 

Good luck with your mom,

Jan

danker's picture
danker
Posts: 1183
Joined: Apr 2012

I was 77 when dxed.  Had chemo pump 24/7 while getting radiation 5 times a week.  After 6 weeks rest had resection.  Ned (no evedence of disease) ever since.  I'm soon to be 87.

Thus don't let your mothers age effect your/her decisions.  I'm living proof that Cancer can be beat,no matter your age!!! Good Luck!

ellend
Posts: 83
Joined: Apr 2016

I also went through the chemo/radiation route before surgery. The reason they do this is to shrink the tumor before surgery. It worked very well on my tumor and it almost disappeared when treatment was done. I was able to avoid a permanent colostomy where if the tumor didn't shrink, it probably would not have been the case. I didn't really notice any side effects for the first couple of weeks, but started to see them later during the treatment. Bowel movements became very painful due to the radiation. The Xeloda affected my hands. Pay attention to the instructions on skin care and talk to the doctor if the side effects are troublesome, he or she can prescribe some things to help.

I was stage II and am currently NED 2 years out. I still live with some negative side effects from the treatments, but it isn't that big a hit on my overall quality of life.

Ellen

myd's picture
myd
Posts: 39
Joined: Apr 2013

Hello, electing to have treatment is a very personal decision.  Stage 3 is not a Stage 4.  Granted, it is not known whether cells are already out there, but just no detectable.  Depending on her physical condition and strenght, it could be strongly suggested to go on with the treatment.  If your mother is already impaired by other ailments, then, the decision becomes a lot tougher.  My wife was diagnosed when she was 46.  At that age, the decision to fight was a given.  At 73, I do agree that the decision is difficult.  I think it must be understood that Stage 3 is curable, but treatment must be swift and with force.  I wish your mother and your family the wisdom to make a decision that will serve her and you the best.  My wife lived for 8 years.  We had good and bad times.  I don't know what I would have done, if she had not decided to stay and fight.  God Bless!

jtrue
Posts: 9
Joined: Feb 2019

I just wanted to thank all of you who have commented and shared your stories and support. I was trying to respond to each to you individually, but I can't keep up. 

I've shared your comments with my mom, and she's thinking about it. She agreed to meet with another medical oncologist and also the radiation oncologist, so we'll see what happens. 

When I posted my original question, she was still in the hospital, but she's home now and doing well, and getting used to the colostomy. It's amazing what a difference it has made for her to be back home and getting some of her independence back (and eating home cooked food!). There's a long road ahead no matter what she decides, so she's taking it one day at a time. 

I really appreciate all the support, and I'm encouraged to hear all of your stories. Thank you!

k8's picture
k8
Posts: 29
Joined: Oct 2018

 my mother was diagnosed with liver and pancreatic cancer. She was in chemo last year for 3 or 4 months. She rarely complains and when she does it's usually trip to ER. They gave mom a low dose of chemo which didn't cause severe side effects. Your mom should really speak with an oncologist. She can stop chemo at anytime. Thoughts and prayers. 

Kazenmax's picture
Kazenmax
Posts: 350
Joined: Feb 2016

I believe the radiation may shrink her tumor and relieve the pain caused by its size and location. Maybe she could try it and see how well she does. She can always stop.

sending love and peace to your mother and you.

k

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