Okay, NOW I'm freaking out!

[holycrapbatman]

Female 26 years old
T3NxMo colectomy and colostomy on 2/11/09
8 treatments of FOLFOX
Colostomy reversal scheduled for 9/15/09


I hope this is over. This HAS to be over. I went in to the ER in Febuary after nearly six months of undiagnosable abdominal pain. My PC had been prescribing antacids, thinking it was ulcers - Nope, it was a 6lb tumor in my colon! The surgeon used the term "evil" to describe it. I only made it through 8 rounds of chemotherapy due to INTENSE, violent, sickness and neuropathy in my hands and feet. I am scheduled to have my colostomy reversed on 9/15/09, and I'm freaking the hell out. I haven't had a ct scan in 8 months and they are not planning on scanning me before surgery. My surgeon actually suggested to me that I leave the colostomy because he's THAT sure that I will have recurrance. I can't do that. I can't make a decision for my life EXPECTING for this to happen again. I can't go through chemo again. I think it was worse for me because I am allergic to metal. I am a single mom to a 5 year old autistic boy - I cannot exist in the expectation that I won't be here for him, or that I will be useless to him if I am here.

I probably have lynch syndrome. I have absolutely no family history of this, but, afterall, I am 26 and otherwise very healthy. I will not get tested. I want to watch my boy grow up for as long as I can without thinking about how he will have to suffer like this.

What would ya'll do?

[meeko]

I think I would keep the colostomy..is it really offensive to you? Whats the rush....wait until a year and get a CT..be sure. If you want to see your child grow up..take into consideration all of your options..talk with all of your doctors. I have an ileostomy and its not that bad...if I didnt have diversion colitis so bad I would be in no rush to have surgery but I also have some other issues too that have be delt with so I have no choice. Thats just my humble opinion

[Lee]

Welcome, I'm sorry for all that you have been thru, but you have come to the right place for information and support.

I have a colostomy, it is permanent and it was my decision. It gave me my life back. Prior to my surgery, radiation had destroyed my rectal muscles, I was tied to the house. Post surgery, I can eat what I want, be out all day, resume a normal life.

I'm with meeko. You've been thru a lot this past year, give yourself some time to adjust to your new life before considering your reversal. You will find a few people on this board who have decided to keep there ostomy simply because of possible bathroom issues.

Lee

[holycrapbatman]

The colostomy is only offensive to me because it changes my life so much. It doesn't "keep" me from getting cancer and I'm very active, so I always have problems with it , no matter what product I use. Yes, having my intestine on the outside of my body is pretty unbearable to me and it is a constant reminder of how horrible things have been, and how horrible doctors think it will continue to be. My rationale is this - if my cancer comes back, I hope it kills me. I honestly would rather die than have any more chemotherapy. Every single time I took it i thought I was going to die. It was bad. Very bad. None of the anti emetics worked on me and I wasn't able to eat for 5 days straight each time. I only weighed 95lbs to begin with. It's true that my son needs me, but nobody needs a mother who is that sick and then just dies anyways.

[jmarie]

I don't have any great advice for you but I will definately be praying that God will help you make the right choices. I also have a baby and know the fear of not being able to watch them grow. That is the hardest part of this whole cancer ordeal, for me at least. But she has also given me so much strength and hope. Good luck with everything!

[weisssoccermom]

I'm not going to even address the colostomy issue because I don't have a permanent colostomy nor did I even have a temp ileostomy so I can't know anything about those and the reality of what it is like to live with one. However, I am going to ask you about another question. I notice that you put down an Nx on the first line. Why is that??? Certainly during surgery they must have taken some nodes out and examined them. If so, that should have given you a number instead of the 'x'. And, having a number there would definately allow you to be staged. IF you had no nodes, then you would be a stage IIA and the prognosis for that stage is pretty darn good. There's something wrong with a surgeon telling you to keep the colostomy just because he's so sure that you're going to have a recurrence. Where exactly would this recurrence be??? For me, there's just too many factors that just don't make sense. Many people only complete 8 cycles of FOLFOX and then just continue on with the 5FU or Xeloda. Was there a reason that this protocol wasn't offered to you??? Being allergic to metal would have given you some nasty side effects with the oxaliplatin in the FOLFOX but shouldn't have done the same with just the 5FU.

I'm not saying that you should or shouldn't have the colostomy reversed - just that there's something more to this that just doesn't add up - at least for me. Maybe knowing your stage (did they ever tell you that??) would help you make this decision.

Jaynee

[Gaelen]

I have to agree with Jaynee -- there are a lot of things happening here. Your post made me ask some of the same questions, things I'd want answered (if I were you) before I had any more surgery at all.
They include (in no particular order):
-- how many lymph nodes were removed?
-- how many were positive for cancer cells?
-- did the surgeon get clean margins around the tumor?
-- what stage does that make me?
-- why haven't I been scanned at least once since the start of chemo, or at the very least prior to the reconnection surgery?
-- what is the follow-up plan now that I'm off chemo?
-- what kind of emotional/mental health counseling is available for me? (if you're not seeing a counselor, why not? This is a lot of stuff to deal with. No need to do it alone...)

I'd also be asking myself:
-- why don't I want to be tested for Lynch Syndrome?
If you're not positive for it, or for HNPCC, or FAP, then that cuts your risk potential substantially. That might help you make decisions with a clearer head. And if you are positive for something genetic that makes it more likely you will recur or develop another type of cancer, you can take precautions.
-- who did you see to do the follow-up care for your ostomy?
A decent wound-ostomy nurse could probably have addressed your physical issues with the appliance, and an experience ostomy patient/counselor might have been able to address your emotional issues with the ostomy.

I 'get' being done with treatment, needing it to be over. But cancer has its own rules and whether we're willing to name them or say cancer aloud or not, cancer does as it wants to do. Not naming it won't make either cancer or a fear go away. If you don't ask the questions you need to ask, ignorance-is-bliss won't prevent bad things from happening. OTOH, If you ask the questions, you can try to take the recommended medical precautions that will let you do what needs to be done to live your life.

Patients who experience the best surgical outcomes go into surgery with clear heads. You can be clear-headed and still be scared -- but feeling what you want to do and having the right medical advice about what you need to do can be two different things. You sound clear about what you want to have happen, but you also sound pretty conflicted about what might medically need to happen. If it were me, I'd be asking my docs the questions you're reading here -- and asking yourself the questions that only you can answer. Hope this helps.

[holycrapbatman]

Evidently, they couldn't find ANY lymph nodes around the site to remove. The surgeon thinks the tumor obliterated them all. They have declared me a stage IIa. I'm not sure why I wasn't offered the 5fu without the Oxi... probably because of the severe nausea and dehydration. I was on emend towards the end, but it only allowed me to keep down water. My oncologist recommended that I have a subtotal coectomy and a comeplete hysterectomy - but again, I haven't been to a geneticist. For the future, the oncologist said I will have a ct scan once a year and blood tests every three months. He would also like to me to have colonoscopies - but that issue has been complicated by the fact that they told me I would be sedated and ASLEEP for my scope in the hospital, and then three people held me down and performed the procedure against my will while I kicked and screamed. So now I can't force myself to have one of those. There is no turning back from something like that and I wish that it hadn't happened.

[dipifit]

hcb, if I were you I would take all of the information your Dr. gave you and take all that to second and third opinions with different Doctors....In my case I did not settle for one opinion I visit 4 doctors before I made a decision of that magnitude as important as it is my life....I picked the right doctor, the one who game me more hope, and I'm doing just fine now. I am also a single mom with a boy that I want to see grow up all the way, I want to be healthy to take care of my duty in life with him just like you!!!

Good luck hcb

Diana

[holycrapbatman]

Forgot to mention, the tumor tested positive for microsattelite instability. That, combined with my age is the reason they suspect me for lynch.

[meeko]

It sounds as if nobody has handled you or your situation with any compassion or empathy. If possible find new doctors! Find someone or something to help you focus, make clear decisions....get answers~!

[eitter]

Apparently doing a CT prior to a reversal is NOT standard protocal and I am here to tell IT SHOULD BE! My story is proof psoitive! They went in to do the reversal not realizing that the radiation had ravaged my insides and frozen my pelvis, so obivously the reversal was doomed to fail and it did and I spent the next 30 days in the hospital. All of that could have been avoided had they done a CT prior to the reversal! There are so many stories of succesful reversals so perhaps the odds of success are so high they do not do a CT?! Who knows because I could have benefited from it.

In your case, I would make sure and have a CT, demand it before the reversal and yes get a second opinion.

Any other questions just ask!

[holycrapbatman]

Hello, everyone. I'll admit, I've had a pretty scary week. I found a lump in my abdomen around the time I wrote my first post, lost 3 lbs in 2 days stressing about it, went in today and found out it was a muscle in my BACK that you could feel in my BELLY. Gross. I'm waaaaay too skinny. but now I feel much better about the surgery, less worried that they will open me up and find cancer on all my organs. *whew!* My oncologist is awesome. I know he just wants to make sure I don't have to go through this again, but I feel like, for right now, I'm choosing the right thing. I will let them gut me like a fish after menopause. BTW, my period didn't skip a beat during treatment, despite how incredibly sick I was. Anyone else get to keep their cycle?

[jmarie]

I was really annoyed to still get my menstruation. I was told chemo would put me into temp menopause but I still get the cramps and all. One thing I know for sure is hormonal mood swings and test results don't mix well! What really scares me is not knowing whether I can get pregnant or not. I am absolutely terrified of being pregnant again. But if I am still having periods there is a chance I am still fertile and right now they say there is no way to know. I know that most likely I am not fertile but the fear is still there.

[Terry]

What do you mean they couldn't find any lymph nodes to biopsy? There are so many lymph nodes in your body. If he obliterated them, how? Do you mean the radiation? He should have taken whatever lymph nodes weren't obliterated closest to the site and biopsied them. I think you need to have a second opinion. Even if you go through with the reversal next week I would take your chart and see another doctor, this one seems for unsympathetic.

Believe me, we all hate oxi, it sucks. I'm off of it for four months and the thought of going back on it makes me sick. You have to think of your son. I'm being tested for lynch right now mainly because I have three children. If you test positive then it's a lot less expensive to have your son tested (if your positive, he has a 50% chance of being positive). Also, if your son is positive then he can have early testing to try and prevent him from having to go through this. You also can take more preventitive measures in checking for other cancers.

It sounds like you had a bad week, I've had some of those too. The ups and downs with cancer stinks but it's something I guess we have to go through. Hopefully it will get better for you with the reversal. I didn't want a colostomy either. Could I live with one? Yes, if I had to but I really don't want to. You may feel better after and if it does come back (and hopefully it doesn't), they can put it back.

Good luck and God Bless!
Terry