Dear Hannah, if you are interested, I'd be happy to share with you how I got my rectal cancer diagnosed at stage I and successfully treated. It's really difficult to make doctors suspect 35y colorectal cancer. You have to know your body really well and be a strong advocate for yourself. Write back if you want to hear more...
There are many facets to FAP, and if you google this you will learn a lot about it. My husband had developed colon cancer along with his brother in their 30's and this is when we learned that FAP was in the family. My youngest son had his colectomy at 12, my oldest son at 16 and my grandson at 10. A serious side effect of having FAP is developing Desmoid Tumors. They aren't cancerous but they grow in a way the invades and crushes other organs so they may as well be cancer. I lost my son and grandson both to a Desmoid. I think for you to write about FAP would show that you are looking deeper than just colon cancer and at an hereditary form of colon cancer. I wish you all the best on your paper, and feel free to contact me regarding any questions!
No problem if you wish to quote my story in your thesis. I should also have mentioned that in some cases a total colectomy can be performed laparoscopically (i.e. "keyhole surgery") which lessens the trauma to the abdomen.
regards
Morecambe
Thank you Mammo! That is a great point and you have inspired me to spread awareness on the hereditary side.
I really appreciate your idea, and I am so sorry for the losses in your family. Thank you again for you help.
Hello Morecambe. Thank you for your help and your story. This is extremely informative and a whole other angle to colon cancer that I had not studied before. Once, again I really appreciate you taking the time to help me with my study. Would you mind if I used bits of your story as an example in my paper?
Thank you for your help.
I have FAP, my mom has it my older brother has it and my grandfather has it. There are tons of fb groups for AFAP and FAP that can help you tons
Hello again - one "medical morsel" from the very sad and profound experiences mentioned by Mammo above is the fact that if a patient undergoes a total colectomy for FAP (as described above) there is a ~17% chance that the patient will subsequently develop rectal cancer. Therefore the rectum requires regular monitoring for cancer after the total colectomy for FAP has been performed.
Obviously for FAP sufferers the outlook is much more pessimistic if the total colectomy is not carried out compared to "total colectomy >>> 17% chance of rectal cancer".
regards
Morecambe
Hi! Awareness of the hereditary forms of cancer would be very important. There is FAP and AFAP. Some parents have no idea that one of them is carrying the mutated APC gene until they have a baby born with Hepatoblastoma (pediatric liver cancer). This is common with FAP and a chld can be born with it or develop it by age 5. Dentists and eye doctors need to be educated on FAP because they often see the first sign......for a dentist it's supernumerary teeth......for eye doctors it's the marking behind the eye known as "bear tracks". Many people with FAP often learn too late that they have FAP, as it turns cancerous in the mid to late 30's. Puberty causes the colon to develop thousands of polyps that will turn to cancer if the colon is not removed. Colon cancer gets a lot of research, FAP not as much. I think making people aware of FAP is very worthwhile. I've lost 5 family members to it that include a son at 31 and a grandson at 18. Good luck in your chosen profession!
Hello Hannah - although I have not suffered from colon cancer, about eight years ago I underwent a total colectomy for torrential diverticular bleeding. Now, a total colectomy (also named ileorectal anastomosis) is often performed to treat cases of colon cancer. Therefore, although not from the same cause, my "story" perhaps helps you in your project with a personal experience of one of the surgical treatments that can be offered to colon cancer patients.
I recorded my experiences on:-
http://www.medhelp.org/posts/show/523166
You will see my posting in reply to the original posting from the patient under my name Morecambe.
Please feel free to come back with any further questions
regards
Morecambe