non standard treatment

Options
brn2ride
brn2ride Member Posts: 32
edited March 2014 in Colorectal Cancer #1
I visited with an oncologist this am. He went over the reports with me from the surgeon who removed a polyp from my rectum two weeks ago.
I got mixed news.
he said it looks as if I have,(perhaps had), a low grade stage 1 type cancer. He said standard treatment would be to remove the area where the polyp was at which would mean a permanment ostomy, and perhaps some other side affects related to male sexual function.
On the other hand he said I could opt for non standard treatment which would mean going in every couple of months for a scope exam of my rectum and an annual colonoscopy. He said there is no way of knowing if the cancer is all gone without surgery and there is nothing else he can do for me. If it is all gone well hooray and lucky me but if it is not and it spreads he said the outlook is bleak.
anyone tried any non standard treatmetns with success?

Comments

  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #2
    Options
    Well, I will give you a non-standard answer. You have plenty of time to seek even more opinions on this matter. I certainly would if I were in your shoes. If you do decide to go with the surgery, I would go to a major cancer center, as some of us said before, to a doctor who specializes in sparing the sphincter...
    If I were you, and this is just my opinion, I would not do anything at this time. I know it is a risk, but you can do many things to change your lifestyle and your health. There are several of us on this forum who have foregone the "standard" treatments, if not at the beginning then at some point along the way. I elected not to have chemo following a lung resection, well into Stage IV.
    Stage I is very early in the process - ask if you had "clear margins" when the polyp was removed. If so, then certainly I would just start making some major lifestyle changes (for example, try to eliminate sugar from your diet, consult an N.D., exercise like crazy, get massages, acupuncture, etc. etc.).
    Ultimately it's your decision, but to answer your question, YES - there are several of us who have not followed the standard path and have had success!
    Best of luck in your decision,
    Susan H.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    Options
    As I posted before, get thee to a cancer center! There is one in Washington state, near Seattle, that just recently treated my sister. Her 'rectal' cancer was treated as anal cancer, because it was so low. She, however, was a stage III (Lymph node involvement). She had a cancerous polyp, also. She was treated with radiation and Very strong chemo....according to the post-treatment biopsy, it is gone, and that is all the treatment she needs....

    Of course, any radical treatment like this risks male functioning. And, should you opt for surgery instead, even tho it IS a great alternative to dying, having a permanent colostomy is VERY life changing!!!!

    Hugs, Kathi
  • KierstenRx
    KierstenRx Member Posts: 249
    #4
    Options
    Hi,
    I assume your polyp was very low if it would mean a permanent colostomy. I agree with Kathi to get another opinion. Find an oncologist that specializes in colorectal cancers. You need to make an educated decision that feels right to you. This is just me thinking, but was radiation to the area discussed?? That could possibly destroy any remaining stray cells. My very large rectal tumor was just a burnt out shell with a couple stray cells by the time I had surgery.

    Kiersten
  • brn2ride
    brn2ride Member Posts: 32
    #5
    Options
    shmurciakova said:

    Well, I will give you a non-standard answer. You have plenty of time to seek even more opinions on this matter. I certainly would if I were in your shoes. If you do decide to go with the surgery, I would go to a major cancer center, as some of us said before, to a doctor who specializes in sparing the sphincter...
    If I were you, and this is just my opinion, I would not do anything at this time. I know it is a risk, but you can do many things to change your lifestyle and your health. There are several of us on this forum who have foregone the "standard" treatments, if not at the beginning then at some point along the way. I elected not to have chemo following a lung resection, well into Stage IV.
    Stage I is very early in the process - ask if you had "clear margins" when the polyp was removed. If so, then certainly I would just start making some major lifestyle changes (for example, try to eliminate sugar from your diet, consult an N.D., exercise like crazy, get massages, acupuncture, etc. etc.).
    Ultimately it's your decision, but to answer your question, YES - there are several of us who have not followed the standard path and have had success!
    Best of luck in your decision,
    Susan H.

    I believe he said it was not clear margins. I live in Omaha and went to a cancer center here to see an oncologist. I believe he said the the area where I had the exision was like 2cm from the spinchter. He is having me meet with another surgeon for another opinion and he offered to send me to the mayo clinic but he said whereever I went they would tell me the same things he did.
    It does look as if I have time on my side and I plan on making lifestyle changes as to diet and exercise.
    I will likely try to go to one of the major cancer centers in the future.
    Here in omaha we have a great hospitol for transplants but I am not sure it is the best choice for cancer research.

    I am a 46 year old male. I have a family and a horse to support so I am hoping to be able to keep working through all of this

    It seems odd to me that they can't tell me the likelihood of having active cells without surgery. he said surgery would be a 100% cure at this point but I am leery to do it if I have a good chance of surviving without surgery.

    thanks for the help and guidance. No matter what happens this has changed my life forever and I hope that I can be as much of a help to others as some of you have been to me.
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    #6
    Options
    I agree with everyone that a second opinion is the way to go. You are in the enviable position where you seem to have a few options, and most of them lead to survival, even if some of the options may require some lifestyle changes. I have had an iliestomy for 2 years and it is the least of my problems. I have become quite attached to my bag (lol). Was the option of chemo to kill the stray cells mentioned at all? If your onc offered a referral to the Mayo clinic then I would definitely go for it. At best, it will provide you with more information and peace of mind when you finally make your decision. Best of luck to you. Monica
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #7
    Options
    I agree that an opinion at a major cancer center is in order. If the doc did not get clear margins then you still have cancer cells growing and you will probably need surgery to be cured. I was also 46 when diagnosed with my stage 3 rectal cancer. I had a great surgeon and had a temporary ileostomy which was reversed. Because my tumor was so low I was left with constant diarrhea and way too many bathroom trips. I had all of my rectal tissue removed. I ended up having a 3rd surgery---which was the hardest decision I have ever had to make and had a colostomy done. I haven't looked back. It's not the end of the world and I am NED 4 1/2 years after my diagnosis. There are many people here who post who are left with such severe bowel dysfuction that it is difficult to work and live. I work full time and live life to the fullest. I am so grateful to be alive. My tumor was so low also.

    If the cancer grows and spreads it can be more difficult to treat.

    Maureen
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #8
    Options
    hi brn2ride,

    I know nothing about rectal cancer but I do know about non standard treatment.

    I had Stage 3 Colon cancer--in my sigmoid colon. After surgery I opted to NOT do any of the chemo that was recommended by my oncologist at the Mayo Clinic. Instead I used diet and Eastern Medicine and lifestyle changes. I have remained cancer-free for over 6 years now.

    Colon cancers are 80% dietary related (as are most cancers) so the diet was the most obvious place to start for me.

    I found a really good Naturopathic doctor who was quite knowledgable about cancer nutrition. My oncologist, as much as I love him, was not. He is quite knowledgable about chemo since that is what he does. But bless his heart, he has supported me 100% of the way.

    As I always say, you wouldn't go to a plumber to fix your car so in my opinion, it's important to seek out the knowledge of a nutritionally based doctor (not a hospital dietician).

    My non standard treatment consisted of weekly trips to my Traditional Chinese Medicine practitioner who did acupuncture, massage, counseling, herbals etc. She was amazing.

    I juiced fresh organic veggie juices and ate macrobiotically. I practice yoga and I detoxed mind body and spirit.....and cut off some toxic relationships along the way too. all quite healing.

    Just wanted to share my non standard treatments.

    I would truly seek out that 2nd opinion somewhere else and work on saving any part of your body that is connected with your male sexual function. You are just way too young to mess with that area.

    Hope this helps.

    peace, emily

Discussion Boards