emotional drain
Beginning stages of my ordeal. 47 yrs old, 3 cm rectal tumor. 10 cm from anal verge. No treatments yet, stage still unknown. More info when I meet with my onc next week. Been reading lots, and find it painfully discouraging most of the time. I can't cope with the idea of a permanent bag if that's where I'm headed. Whats my chances with a low tumour location? Any successes with 10 cm or less room to 'operate'?
Im inspired by the many positive stories, but I guess because I'm in the early stages of this thing, I'm easily overcome by what lies ahead.
So many questions, so many worries. My family is (outstandingly) doing their utmost to put on a brave, strong front. Sadly, I see the sadness that lurks within them, and it tortures me. I feel like I've let them down, especially my mom. She has enough to deal with and should be enjoying her well-deserved retirement years.
She's the most nearby of my immediate family. Yup, I live alone... and how much more of a challenge is that going to be... my income... my job...
I pray for strength and a successful recovery.
All the best to all in this forum. I feel it's family-like community, the Fighting Spirit in all of you is admirable.
my best..
kris
Comments
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Positive Thoughts
Kris, we have all been where you are now. Yes the diagnosis and thoughts of tests, treatments, etc. is overwhelming, but know that you are not alone in this even if you live alone. Your family and those here on this forum are here for encouragement and advice when you need it.
I really cannot comment on the likelyhood of a bag or not since I was fortunate not to have to endure that. I also know that you will hear from many people to keep your hopes up but I am telling you from 11 years experience with this awful disease that your attitude and your willingness to fight is 80% of the battle. I am in my third recurrence with this now and am currently in chemo treatments again. While it is hard to go through, there is light at the end of the tunnel and hey....who ever said life would be easy anyway. Stay positive and lean on those here for encouragement when needed.
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Overwhelming
Kris: There is so much to deal with and so many unknowns, it is natural to be overwhelmed. Perhaps a little meditation and living in the now would be helpful in dealing with it all. In truth, all any of us ever has is this moment. Best of luck in your upcoming challenges.
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Hello Kris,
Hello Kris,
I was where you were a month ago. I dropped about 10 pounds in a few weeks due to the anxiety.
Your surgeon would best know what can be saved and what can't be and would need your CT scans and an MRI to make a preliminary assessment. That's the way it worked for me. The other main doctors that you'd work with are your oncologist and radiologist (if applicable). But the surgeon is the person that sees this regularly and actually does the work. I'm having chemo and radiation done locally but I picked a doctor at a top-notch hospital for the surgery.
mike
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Welcome. Please know that
Welcome. Please know that what you're feeling is natural and normal. We've all been there and look at us now! We're not crazy! Well, maybe some...
Anyway, you will also get to this point but I'll tell you a few things. One, do not go on Google and look up a bunch of crap. If you need to know what something is or to clarify something, do so. But do not look up stats or odds or what will happen. First, much of the information is old and out of date. Second, everyone's path to wellness is different. What works for one doesn't necessarily work for another. The treatments are all over the place. There are a few things that have a common thread such as getting radiation and chemo and then surgery and most people seem to get Folfox chemo at some point.
But some don't have surgery and there are a number of different chemos to try and some get ablation and some get other things. And some get bags and when they do they might get just an illeostomy or they might get a colostomy. But others don't get bags. Some have the temporary bag removed and some wish they still had it and others are so happy to be done with it. The treatments, results, and responses are all over the place. Many peopl get a port to have their chemo and some people love it and some people hate it. I hated it and was talking about it to my chemo nurse last time I was there and she said for some people it's a Godsend.
To sum up, colon cancer can be beaten and people are doing it all the time. Some will not beat it but the odds are improvng daily and new treatments and research happens every minute. Do not let this beat you down mentally. It takes time to soak it in and you will eventually find out what stage it is. Basically, if it's just the tumour it's stage two and if it's in any lymph nodes it's stage three. If it's in other organs- usually lung or liver with colon cancer- then it's stage four. We have a number of stage four long time members on here, it can and does happen. Thank God for them, they give us all hope! If the cancer has progressed to an organ it's still colon cancer in that organ. For example, I have mets in one lung but those tumours are still colon cancer, they do not become lung cancer. So they are treated with the same methods as colon cancer.
You will get to a better place mentally. It takes time for the brain to accept things like this but it will and you'll find you don't think about it constantly or wake up at night and think about it. I recently went on sleeping pills prescribed by my onc because I was waking up and obsessing after getting some recent bad news. Now I sleep like a baby. You'll start to have days where you are happy and suddenly realize that you didn't think about it all day. It will come. I hope you can find peace soon. The stress is horrible and the not knowing is soul sucking.
Good luck!!
Jan
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Welcome Kris
Wow, your story sounds similar to my husbands. He too is 47 and was diagnosed in Dec 2016 with 3 cm rectal tumor. His also was very low. Not sure how far up but the surgeon was able to feel it digitally on exam. He had 28 days of chemo and radiation, 8 weeks off and then surgery. He did end up with a permanent colostomy. He is a firefighter and the city he works for has been great. He has been working "light duty" since this started. He had a large amount of sick time and obviously has taken days off when he was not feeling well. Another job has recently opened up in the department that he will hopefully get that does not require him to be on the trucks. He is currently doing 4 months/8 treatments of Folfox and has been dealing with that better than he was doing towards the end of chemo/raditaion before. The importance of his job/income at this point is stable is not lost on me. I cannot imagine adding the stress financial hardship to the rest of this. I do work too but it would have serious impact not to have his. I hope that your employment remains stable. Many are able to work during chemo/rad depending on the type of work you do.
As far as the bag goes, he is adjusting really well. I am amazed and so very proud of how he has done with this life change. Obviously I certainly hope it does come to that for you but if it does please ask for a home health nurse after surgery that is a certified ostomy nurse. The information, training, etc that they provided was invaluable. They know all the tricks of the trade so to speak and were amazing!! He hopes to get to the point after chemo where he can "irrigate" his stoma. Won't go into details about it but do research that too.
I find it incredibly hard to put in to words all the emotions and feelings that we/he/I have gone through since December. This journey has been and will continue to be very scary. Most days I try to put in the back of my mind and carry on as if everything is normal. Partly for us and partly for our kids. He has researched some on his own regarding possible outcomes, etc but does not come on to the discussion boards for fear of reading too many negative things. I too find myself getting depressed if I am reading or researching too much.
You have come to right place for questions and support.
Betsy
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I'm sorry
Kris,
I'm so sorry that you are in this situation. It sucks. I was diagnosed in February of 2016. I had a tumor too low to salvage things so I have permanent colostomy. All my life I always thought that the worse thing that could possibly happen to me would be if I were paralyzed or if I had to wear a bag. It's not that I'm vain, it's just I could not imagine how my life would be.
Well I'm here to tell you that there are worse things in life. Truly there are. I won't kid you. I hate ... absolutely hate this bag and this whole situation but I will tell you that after some time, it just becomes the norm. It's not pleasant but really... after a while you just don't think about it. Right now everything is coming at you... cancer, surgery, chemo. The best advice I can give you is to put one foot in front of the other and carry on. Take each day and deal with the moment. don't think about the rest of your life. Get through today and then tomorrow and the next and I promise you, soon you will get better.
I have two beautiful grandchildren, a loving son, and a wonderful husband. I'm very lucky to have their support. You have a long difficult road in front of you. I wish you the very best. Please know that I understand how overwhelming it all is. We are all here for you.
k
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Sorry
Sorry for your diagnosis and having to join this group. Please read my "About Me" page as mine was also low in the rectum and even though they gave me an ileostomy, it was temporary but didn't know for sure until after surgery. Always get a second opion as I did and I'm glad because my first surgeon insisted that a permanent ostomy was necessary, my second opinion doctor did a reversal on me and I'm still thankful. Although I'm having constant bathroom issues of up to 15 times a day it doesn't mean you will. Ask you doctor about a reversal and a J-Pouch, that is making a new rectum out of the descending colon. It worked for me. I've been cancer free ever since. Good luck and keep us informed.
Kim
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Hi Kris
Hey, for all you know its not cancer! Its not cancer until the biopsy tells you. But in case it really is, I think you'll be fine. You have your family to help you, and let your mom be your inspiration. Its not easy being diagnosed with cancer, its not easy undergoing chemo, and the emotional stress is definitely a struggle so I suggest you tell yourself to be strong. Your family is there for you. And we are here for you.
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Still here Stage Four Twelve Years ago
Hi Kris, So sorry that your are here. However there are many great people here and you will gets lots of help and encouragement. My story is on my page where you will see my blog "How I Beat Stage Four Colon Cancer" God bless you blessed39
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Keep the Faith
I hope that all is well for you. As a caregiver the one thing that I can say is take care of yourself. We are sad and we are concerned. We are more concerned about how you or our own verion of you is doing. If you keep the fight and keep the faith then we will be okay. Sadness is part of life as all the other emotions. Surround yourself with faith and friends and family and keep the faith.
Ill be keeping it for you as well
Marta
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Question
I was wondering where you are at this point Kris? I was diagnosed Sept 14th with rectal cancer so you are about 6 weeks ahead of me? I am meeting with the oncologists next week.
Dawn
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Bellsandbuginmich, I saw your
Bellsandbuginmich, I saw your other post in the other thread. I have almost the same thing you do. First told it was colon cancer back in July, then it got switched to rectal because it's touching that area. This has been the toughest thing I've ever dealt with and I've had some doosies. In my case the first colonoscopy said it was 13-15 cm away from the anal verge and the endoscopic ultrasound said it was 10-13 cm away. It might be due to the way I was laying on the bed that it shrunk up a little bit. It's about 30mm in length, 23 wide and 17mm thick. So far the surgeon and both oncologists told me there won't be a permanent bag. I still have by doubts. I just finished the radiation and chemo sessions a few weeks ago and am having a follow up pet scan tomorrow. I've written a blog (click my icon and click blog). It is a time line account of what's happened so far. I'm still writing it and it's very long winded. Most of it has to do with this and the roller coaster it put me on. A few times I diverted onto other things but they were related in so far as the stress they caused and the physical manifestations of it. I can't say everyone is affected the same way. I guess a lot of it depends on the location and prognosis as to how it's dealt with.
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emotional drain threaddarcher said:Bellsandbuginmich, I saw your
Bellsandbuginmich, I saw your other post in the other thread. I have almost the same thing you do. First told it was colon cancer back in July, then it got switched to rectal because it's touching that area. This has been the toughest thing I've ever dealt with and I've had some doosies. In my case the first colonoscopy said it was 13-15 cm away from the anal verge and the endoscopic ultrasound said it was 10-13 cm away. It might be due to the way I was laying on the bed that it shrunk up a little bit. It's about 30mm in length, 23 wide and 17mm thick. So far the surgeon and both oncologists told me there won't be a permanent bag. I still have by doubts. I just finished the radiation and chemo sessions a few weeks ago and am having a follow up pet scan tomorrow. I've written a blog (click my icon and click blog). It is a time line account of what's happened so far. I'm still writing it and it's very long winded. Most of it has to do with this and the roller coaster it put me on. A few times I diverted onto other things but they were related in so far as the stress they caused and the physical manifestations of it. I can't say everyone is affected the same way. I guess a lot of it depends on the location and prognosis as to how it's dealt with.
Hi Kris. I have just joined the ACS and started to read your thread so I apologize if you have updated information. My husband was diagnosed with colorectal cancer last December (the week before Christmas). He had 5.5 weeks of radiation and oral chemo and then 6 weeks of "recovery" prior to his surgery at the end of June. His surgery was quite long - 12 hours (but quite successful) and our hospital stay was riddled with complications and lasted 3 weeks. He developed an ileus, was released from the hospital before the ileus was resolved and returned 9 hours later, developed an abscess, had a second drain placed, developed a fistula and how has a stent in his rectum (placed just this week). He had the anamostosis and his tumor is also very low in his rectum (9cm up I believe) and due to the location, he also had an ilieostomy. Going into the surgery, he was dreading the ostomy bag (and I am not exaggerating, he was in tears as they wheeled him to anasthesia because he knew they were placing the ostomy bag). After the surgery, and in light of other post-op complications, the bag is truly the least of his worries. He doesn't love it but has adjusted to it rather well and it's now just a way of life. We are hoping it does not become permanent (based on other complications, that possibility is not completely off the table) but we are going day by day, step by step, praying often along the way. My husband is also 47 and outside of cancer, a very healthy and active father of 3. The emotional toll has been as difficult, if not more so, than the physical one. Just know that you have greater strength than you can imagine and that on those days when you can't stand the pain, the unknown, the perceived looks of pity, or anything else that accompanies this wretched disease, there are lots of us out here, just like you and your own family, cheerig you on. It is not a light burden to bear for patients, caregivers or their loved ones, but it's far better than any alternatives and will affect you in many positive ways that you can't always envision in the moment. Prayers and best wishes to you for kicking cancer's a**!
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Im still with my bag and half
Im still with my bag and half my colon floating around with nothing to do. It was the best thing that I ever done and I should have done it earlier in life. There is no smell(outside the bathroom lol), no worries about bathrooms and once you get in a routine no real pain or worry anymore. No one ever knows it is there and really surprised me. Some people make it a negative and never really give it a chance but If you have to go to the bag, make it a positive in your life. You will be fine:)
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A colostomy can be a new beginningaoccc2015 said:Im still with my bag and half
Im still with my bag and half my colon floating around with nothing to do. It was the best thing that I ever done and I should have done it earlier in life. There is no smell(outside the bathroom lol), no worries about bathrooms and once you get in a routine no real pain or worry anymore. No one ever knows it is there and really surprised me. Some people make it a negative and never really give it a chance but If you have to go to the bag, make it a positive in your life. You will be fine:)
When first diagnosed I thought I would rather not live than have a colistomy. How foolish I was! Having this bag means a second chance at better health. More tome with my family. It's inconvenient, but far less than the bathroom issues I have endured for the last 2 years.
Best wishes to you during this confusing, overwhelming time.
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anal cancer
Hello Kris, I don't know if you still check in here... I was diagnosed with anal cancer Aug. 31st 2017 ... then in September they found breast cancer as well. I have been doing my research on treatments for both cancers... standard protocol... and alternative medicine therapies. My entire career since 1975 is in science and medicine and I study/research every day as if I were back in college. Reading the professional documentation from top cancer treatment centers, NIH, cancer.gov, and many others... There are four entire pages of side effects from chemo and radiation. I am unwilling to sacrifice my current health for maybe getting rid of the tumor on my anus... I refuse to allow them to slice me up with a radical APR surgery, colostomy and all of the complications that go along with that. I have completely changed my diet to support my immune system. I am getting acupuncture weekly to boost my immune system. I am getting ten hours of sleep each night to aid in healing. I work on strengthening my spiritual connections every day and I am in close contact with my family to help my attitude though I do not tell them of my anal cancer... only sharing my breast cancer dx with them. As our family has only seen total debilitation and no survival of cancer treatments (twenty-six friends and family lost to treatment within the past ten years)... they are totally on board with me on finding alternative therapies to stop the growth and spread of the cancer I have. I am blogging on here because I ask the doctors directly... "what happens if I don't do any of the treatments they want to do to me???" ... Their response: "I don't know"... From what I know of our bodies and my own strength and the strength of my immune system... I am solely concentrating on strengthening my immune system to work properly and get rid of the cancerous cells by way of my immune system doing it's job and filtering them from my body... allowing me to heal. So here I am four months post-diagnosis and yes I have a tumor on my anus and a tumor in my left breast but I can still do everything I need to do in a day whereas had I started treatments... I would be in the midst of treatments and suffering all of the side effects I read about in the blogs here.
Whichever methods of treatment you decide to pursue, I wish you the best outcome and doctors that listen to you and understand your wishes for care. Thankfully, I have two doctors who understand where I am coming from and they assist with palliative care that I ask for... lomotil and immodium for assisting with leakage... and flexeril to stop spasms of muscles of my anus but otherwise taking none of their suggested treatments.
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