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mykidsmommy's picture
mykidsmommy
Posts: 78
Joined: Apr 2007

Hi All~

It's me Mommy. Quick run down.... I am 35 years old - dx at 34 - stage 3 colon cancer, 17 lymph nodes. I had major surgury and 6 months of big time chemo, in patient, every other week two nights away from kids - it was rough. Well, I was aout 1 year into remission, they found a tiny spot on mu lung. Watched it for three months - more PET scans it did indeed grwo a little bit. So two weeks ago I had RFA - it is gone, but it was colon cancer. So tonight I was saw my onc. he says he he has been "struggeling" with this as there is two schools of thought on whether or not to do follow-up chemo. He says on one hand it could be just a solitary mass that was a small cell that the chemo missed - and we may never see another one again. 50 / 50 chance on that. OR do 6 months of "kick my ***" serious chemo as a type of insurance "just in case" there is any more hiding - I really don't like the word "aggressive" because it says that if you don't choose the "aggressive" treatment plan you are being passive? Hardley! I hate those choices. My husband asked my doc " If this was YOUR wife what would you do?" - He said he really didn't know. Thanks. He did offer to put it to the tumor board, which meets tomorrow, and see what they say. 40 docs will hear my case - and we predict they will be split.
Now we ALL know what 6 months of chemo is like, and with my two kids - it is hard to fathom doing that again. I told my husband, I feel like I am running from the law, and my choices are turn mysef in ( to chemo) or wait until it finds me - IF it ever does.
This is a hard call. My told me to " go with my gut" and my gut says it is ok to wait until another mass or lump appears, IF IT ever does, and talk chemo THEN - but then what if I wait and 15 lumps appear- then I was foolish not to chose chemo.
Yuck - I hate this part. I like being happy colon cancer survivor mom - this makesit hard and more real. I sat with my husband over dinner (it was date night, but the onc appt three the whoel nightoff) and we were talking pron and cons of chemo and no chemo, and I sat back and really couldn't belive we were havy such a majot heavy life altering decision talk - over sushi! How did we get here? But here we are - so on we go. Kissing the kids goodnight I wondered what they would think I should do - I know they need thier mommy for as long as they need me - which is 35 more years right?
So - my colon cancer compadres - what would YOU do?????

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Oh Mommy,that IS a tough one!! Honestly after thinking about it, I would have the chemo. If I were to lay there on my death bed (sorry to be so blunt about it) and I hadn't had the chemo and that one spot had multiplied into many, I would regret every day that I hadn't had that chemo and regret every future day that I didn't have to spend with my kids. I've often thought about that situation for myself and I know that I would have to fight the hardest I can fight for my children, and to me, that's doing the chemo. That's just my opinion and I'm sure it's not right for everyone, but I'd do it for them (I have 6)and the possibility of being with them longer.

I'm so sorry you're up against such a decision, it's not an easy one to make! I hope you'll find in your heart the answer that you need!

Jorie

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hugggggs Honor!

Ok, I was going to head to bed, but I just have to answer your post. Talk about a huge decision to make... and huge it is! There are pros and cons to everything, every decision one makes in life, so this is no different.

Since I am in a very similar position as you, I'll just babble here a bit because chances are, I'm going to have to be making the same decision as you.

Whichever decision you make, it's going to be the right one... and you have to believe in that. Whichever decision you make is going to have some good pros going for it and of course will have it's cons. And the end result... you will never know if your decision is what got that result or not. If you don't do chemo and no more spots show up, did this happen because of your decision not to go with the chemo, hence you saved yourself the fatigue of chemo? What if you choose to go with the chemo and more spots show up... are you going to be mad that you put yourself through the chemo only for them to show up??

Ok... I'm going by my own situation here. As you know, I am going for my RFA procedure on Tuesday (the one that got rescheduled). We already know there are two spots/lesions that look like they are cancer since they both have lit up on a PET scan and have grown... granted, very, very slowly, but they have grown. So they are getting zapped on Tuesday. That leaves 5 spots that we aren't sure about. 2 have not grown at all in the past 10 months, so they could very well be scar tissue. The remaining three - 1 has not grown and 2 have grown just a tiny bit. So these could be benign, or they could be cancer that is "lazy" hence the slow growth. From what I understand, they are too small to be zapped at this time... so we are going to be in a "wait and see" pattern to see if they are going to grow over the next months/year. If so, and if no others show up, they too will be zapped.

My onc would like to hold of on the chemo and go with the RFA (and she is a chemotherapist). Of course, in my case, we know these lesions are so lazy, they are sooooo slow in growth, to the point we don't really know what they are. Now, if I have a CAT scan and we find a bunch of new ones... then the RFA procedure will be out the window and I will have to go on Chemo.

So, I will be seeing her on the 26th and I am going to ask her what her opinion is of going on chemo now and being "aggressive" rather than waiting to see if more show up, or why she feels we should hold off and get through the RFA stuff first. I'll definitely let you know what I hear.

Sheesh... I just realized I wrote you a whole saga here and still didn't say what I would do if I was lesion/spot-free right now and would I do preventative chemo or not. I guess one of the questions I would ask is, 1) "IF I do the chemo, is there a good chance this WOULD kill off any potential free-floating cancer cells, or ones that may have taken root but haven't started sprouting yet, or is this just a 'we hope it might work but we don't know'?" I'd also ask, 2)"If we waited and more showed up, would the chemo be just as effective if we waited til they showed up vs having the chemo now, not even knowing if there's anything there?"

If the answer to #1 is that it would give me a high percentage chance of killing off anything before it started, then my answer would be - go for the chemo.

If the answer to #2 is "Yes, the chemo would be just as effective as the preventative and would kill them off before they really got a start to grow much" - then I would wait.

BUT, if the answer is that they don't know how effective it would be for #1 but if you wait then the chemo will shrink the spots but not necessarily kill them off.. it would just be a matter of keeping them under control for as long as possible... then my answer would be to definitely go with #1. If you never get any more spots, then it becomes a moot point as to whether the chemo did it's job or you were never going to get any more spots... the end result is you don't have anymore!

Not sure if this helps, but I think you need to ask a few more questions and then go from there. Please, please keep us posted!!

Hugggggs,

Cheryl

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

Hi Honor,
When i was dx st3c in 98 a new chemo was just starting to be used. It was 5fu in conjunction with leucovorin. Well it almost killed me. My onc suggested another month of it and I would be gone with renal failure. The only option was a very old regime of 5fu and a drug called levamisole which is an anti-parasitic cattle drench and sickening as well. I had it administerred via canula in the back of alternate hands for 48 weekly sessions. I started chemo 3 weeks after my opereation. My onc thought it was too soon ,I thought it was too late. I bugged them about rad but the area of my ca was floating all over the joint so they could not target it. My wife suggested that if I were to die of cancer she would kill me.. I felt at the time that I had to do everything in my power to beat cancer. I made my choices and right or wrong I stuck by them. Once you make a choice there can be no regrets. I'm not leaning either way but I do believe that you will know instinctively which way to go. Whatever you choose I wish you good fortune and a long and healthy life with your kids. Ron.

neon356
Posts: 137
Joined: Mar 2004

If it were me, and given your age, I'd opt for the chemo. Temporary grief for best chance at long term survival. ....Carl

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krystiesq's picture
krystiesq
Posts: 242
Joined: Jun 2008

Trust your gut. You probably already know what you are going to do. If it were me, I would take the chemo and if it got to bad, I would quit taking it in the middle.

taraHK
Posts: 1961
Joined: Aug 2003

You are right -- this is one of those decisions where the medical community itself is split. And I believe very strongly it is a highly personal decision, one you will have to make (in consultation with your hubby, doctors, etc.).

I will tell you I have been in almost exactly the same circumstances and I chose chemo. I know the thought of that is daunting to you right now. I would be happy to elaborate on my rationale but honestly I don't want to bias you to much thro this tough decision. I will say I had young kids at the time, and they were my primary motivator thro it all (and still are).

Can you discuss a relatively less "whammy" chemo?? For example, I found XELOX to be easier on me than FOLFOX....

Best wishes to you. You will make the right decision for you.

Tara

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

This might have already been brought up in one of the previous responses (sorry if I'm repeating it) but I would have to know whether doing six months of chemo now would take away possible chemo treatment options in the future IF the beast were to appear again after chemo. I'm just curious if there is a limited number of times you can be on the chemo.

I believe you said that there was a 50/50 chance, or 50% chance, of a mass coming back or a new one arriving... how do the odds look after doing six months of chemo? I think I would do the chemo if it improved the odds such as 75% chance it never comes back or such. Understanding that we don't like odds and %%%, but in this case, I think I would do what I could to improve those pesky odds.

I don't honestly know what I would do. There was such a long time that I just thought I wouldn't go through chemo again if the beast came back. I would fight it with alternative methods... however, I am young as well (diagnosed at my 27th birthday and 30 now) and have a young daughter (five) too... and know without a doubt that it would nearly destroy her if she lost me. I think I would take whatever "insurance" I could get pending the answer to my questions above.

Do your treatments have to be done in-patient? All of my treatments were done in office, I was home every night. Maybe that would make the decision easier?

Whatever your choice may be, never look back. Think about your decision down the road. Will you regret whatever you are thinking?

How often are they going to scan you? Can you play the "wait and see" game and not give anything a chance to grow if it pops up?

My heart goes out to you. You have some heavy thinking to do and I pray for you. Whatever you decide, it will be the right decision for you. Just remember that.

Patricia

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

Trust your intuition, If it were me I would do the Chemo, but that is me.

Best luck and let us know

mykidsmommy's picture
mykidsmommy
Posts: 78
Joined: Apr 2007

I am overwhelmed with the number of you who would take the time to read and respond to my crossroads - when I know you have tough choices of your own. I am humbled.
I will be reading and rereading all your posts and sharing with my husband.
All of you have made me feel so much better - YOUR advice and encouragement , all from those who really KNOW the ramifications of these choices - YOUR input means so much. Thank you.
I spent the day on the beach of Coronado, with my kids....not a bad life. I felt myself feeling less weight of the pressure of the choices ahead and more open to whatever God wants me to do.
Thank you for the great questions you all brought forward for me to think and ponder - and ask my doc. I will hear from him tomorrow and hear what the tumor board had to say. I will be praying for patience as I sit on this for a few days or so.
I cannot thank you all enough.
So far - chemo looks like the popular vote. Kinda funny and ironic that chemo would be popular!
Good night ~
Honor

polarprincess
Posts: 210
Joined: Aug 2008

hi, what a tough decision... the thought of more chemo has to be a tough one especially when a person remembers the quality of life when on it.. and weighing the risks of more toxicity.. i have been reading alot about a couple of the newer tests that are out that doctors can order to see if there are any circulating tumor cells for colon cancer in the body..maybe ask your doctor about those if you are still at a crossroads? Good luck with whatever you decide. I am not sure how many lymph nodes positive you were..you mention 17 nodes in your post but is that how many were removed or how many were positive? I think if i had a lot of positive nodes, i would be more apt to opt for more chemo than if i just had a couple..

mykidsmommy's picture
mykidsmommy
Posts: 78
Joined: Apr 2007

Hi Polar ~
Thank you so much fr your input - I was wondering if you had any more info or names of the tests you have been reading about - I would like to think there might be another way to see what may or may not be lurking - maybe the article you read it in?
Thanks so much!

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, Honor.

I'm sorry that I just got a chance to read this post. Anyway, my vote would be with the majority. I would take the chemo! I pray that you will have comfort with whatever decision you make.

*hugs*
Gail

pamness
Posts: 515
Joined: Nov 2007

If it where me at my current age 56 without the consideration of children - I would do the chemo
At your age, with a family - I would opt for the chemo - hard though it is. If you want to wait for another mass - will it be one, or two or who knows.

Goodness knows I had a horrible time with chemo, but I would do it again if I had to.

I hope whatever decision you make works for you.

Just out of curiousity what type of chemo did you have that required you to be in patient for two days per cycle?

You are only 35 - I would go for the long term cure.

Pam

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