Farrah's Gone

I'm sure a lot of you have heard by now that Farrah Fawcett passed away this morning. I am feeling so very sad for her and her family right now. She fought this so very hard and never gave up--she was so very courageous. Those of us who have been in the same fight with the same cancer have lost one of our warriors, and someone who brought some much needed attention to anal cancer.

What now? Does it get put back on the shelf because it's still considered a rare cancer and we've lost our spokesperson? Does the hope of more awareness and research for better diagnosis and treatment just fade away? Will it continue to be referred to as a rare cancer, which gives people the impression that it could never happen to them? Well, there were over 5000 cases diagnosed in 2008--I was one of those cases. I'm not a statistic, I'm a person--a person with a cancer that people don't like to talk about or even think about. Rare or not doesn't matter because I still got it. It's a very lonely cancer, as there are no support groups for anal cancer. We don't have a ribbon, or kitchen appliances, or bumper stickers, or 3-day walks for a cure. What's it going to take to get it the attention it deserves?

Farrah, now you can rest--your fight is over. For the rest of us with anal cancer, we will continue on. Farrah is not only a Charlie's Angel, she is now our angel. May God Bless her and the rest of us fighting this terrible disease.

Martha

By jamiegirl
Posted June 25, 2009 at 5:03 pm
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I know Martha. I hate when they say that something is "rare" - nobody wants to be that "rare" person, and one feels helpless because there is not enough attention put toward it because of that rareness. RIP Farrah...

By yellow33
Posted June 26, 2009 at 10:20 am
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Please can you explain is it 5000 cases worldwide - how many male or female - i am in the predicament that my doctor will not screen as he thinks this is rare. and would be screening programme if it were necessary? sorry for my ignorance but i really would like to know my risk for my two boys sake thanks

By mp327
Posted June 26, 2009 at 10:40 am
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Yellow33--

I believe the number of 5070 cases in 2008 was for the United States, with 680 deaths. The percentage of women being dx'd with this cancer is higher than that of men. While it's still considered a rare cancer, the numbers are on the rise. Doctors still seem to be quite unwilling to screen for this disease unless the patient presents with symptoms. You did not say if you were having any symptoms and what kind of doctor you asked for a screening. If you are having any kind of symptoms, such as rectal bleeding, bloating, chronic constipation and the feeling that you always need to have a BM but can't, then I would suggest seeing a specialist. Also, I don't know your age. If you are young, perhaps your doctor believes this cancer strikes people mostly over the age of 50. I participate in another forum and we have quite a few people on there who are under the age of 50, and at least one, if not more, who are in their 30's. So, do not let a doctor tell you you aren't "old enough" to be worrying about this cancer. Many doctors will want to perform colonoscopy to look for this cancer, but that is not the test that looks at the anal canal. My recommendation would be to seek an opinion from a colorectal doctor who can perform anoscopy (a short scope to view the anus) and perhaps even an anal pap smear (few doctors are doing this test yet) if you have concerns or symptoms. If you need anymore information that I can provide, just hop back on this thread and let me know. I'll be happy to tell you whatever I can.

Martha

By Percyfaith
Posted November 13, 2009 at 11:45 pm
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Martha your name and your disease caught my attention on Inspire. My name is Martha and I was diagnosed with Anal Cancer on July 23, 2009. I spent 2 months at Cancer Treatment Centers of America AZ location and returned home to Virginia on Oct 15th only to deal with blood clots in my left leg for the past month. I now have extreme fatigue that was not helped any with the inactivity regarding the Leg clots. My cancer treatment included 30 radiation treatments and two weeks of Chemo (24 hr a day pump for 5 days each week). I had 4 days in the hospital there and side effect, after side effect after side effect. Worse for me allopathic treatment is not where my faith lies I prefer holistic healing. Above that is my Faith in The Lord Jesus Christ and I ended up with conventional treatment because of my husband. It has been a long hard journey so far and as more of my hair is falling out and extreme fatigue and shortness of breath is bothering me I am discouraged. I will continue to put my faith in God and Trust and Wait for His purpose, the meaning for this suffering in my life. I believe that all suffering in the Christian Life is designed for blessing. Just right now I pray for mercy with these side effects. I've never been good with pain. I will most likely seek out holistic ways to proceed to healing - not from the cancer but from the cancer treatment. I have not considered the cancer much since I feel it is gone- had one CT scan for the blood clots that did not show any cancer tumor or node- I can't take that as proof positive that my cancer is gone, but can't even consider anything except healing from these hellish side effects. Thought you might understand and I am looking for support. Both to give and to receive support. Prayers for your challenge.
Martha

By jamiegirl
Posted November 14, 2009 at 8:07 am
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percyfaith - Martha (mp327) and also dragonfly23 are both wonderful ladies to talk to regarding your situation. I hope you find some good holistic healing from your treatments...

By mp327
Posted November 14, 2009 at 8:36 am
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Martha--

I am so sorry to hear of your cancer diagnosis and all the ongoing problems you are dealing with post-tx. However, you have not been out of tx too long, so don't be discouraged, as things will gradually improve. I am 14 months post-tx and my life is normal, for the most part. I still deal with occasional bowel issues (mostly diet related) and stiffness and pain in my legs, but these are nothing compared to what one goes through during the tx phase, as you well know. I am glad that you have found comfort in your strong faith and that you will soon see the healing process begin. It is ironic that we are both named Martha--it was a common name back in the early 50's when I was born, but not so common these days. From one Martha to another, I wish you the very best in your continuing journey with anal cancer. May you be blessed with complete healing and renewed energy. Take care.

Martha

By Wendii
Posted November 14, 2009 at 9:42 am
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Hi Martha - Just before I came on this sight - I was looking at blenders online and saw the "cook for a cure" for breast cancer. I am amazed how many women have been diagnosed with breast cancer - but then thought - hmmmm I had a rare cancer - especially for my age of 46 - endometrial cancer. I got to thinking that I would like those pink ribbons to include - somehow - all female cancers - cancers of our lower half - very personal cancers. Then I read your post. I understand, I think, having a 'rare' cancer.... I have great empathy for you, Martha. God will continue to bless you and hold you in his loving arms.

By mp327
Posted November 14, 2009 at 10:12 am
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Wendii--

Thanks you for your post. If you read all the posts on this thread, you will see that there are two Martha's, both having been dx'd with anal cancer. If your thoughts are for me, I would like to say thank you, and also ask that you include the other Martha as well. I like your idea about including all female cancers on the pink ribbons. However, think about this idea--how about a ribbon dedicated to awareness of any and all HPV-related cancers. This is not my original idea, but one that has been discussed previously by others with HPV-caused cancers. I thought it was a great idea.

Martha

By calla53
Posted November 15, 2009 at 10:23 am
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I am a 56 yr. old female & was diagnosed with anal cancer in March of 2005. Because the tumor was attached to my vaginal wall it was inoperable. The reason I went to my colon doc. was because of mahogony colored blood from my rectum (like a period, not just in my stool). I had had a colonoscopy just 4 months prior finding & removing a few polyps... I was told "see you in I yr.", for some reason I said to myself "I think sooner". Well, one week later I was called in for the bad news. I received the same treatment as percyfaith & was considered in remission, however I am still suffering from the side-effects 4 yrs. later. I suffer from have bladder cystitis, vaginal stenosis, mental confussion, urethra stenosis, painful anal fissures, constant bowel issues (Depends) & occasional cellulitis. The more I look, the more I see that anal cancer is not so rare. Do any of you girls share the same symptoms as I? If so, how are you dealing with them?

By mp327
Posted November 15, 2009 at 12:15 pm
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calla53--

I'm sorry to read your story and hear of all you have been dealing with. Thank goodness you listened to your body and knew that something wasn't right, even after being given the all clear after the colonoscopy. The fact that you are in remission after 4 years gives me great hope, but I can empathize with some of your ongoing problems, mostly bowel issues. I still have frequent bowel movements some days, but without the urgency that I once had during and right after tx. I can control this with diet somewhat, but would still like to go through a day with only one or two BM's. I still deal with bleeding with BM's, especially if I have a little constipation, and can take several days before that subsides. I have not had problems with anal fissures to date. The bladder issue I notice is with capacity--seems I can't hold as much as previously, but don't have incontinence. I am forgetful at times and have gotten into the habit of writing everything down that must be remembered--can't spell as good as before either, and my dictionary is always by my side. As for vaginal stenosis, my rad onc gave me a dilator to use after tx ended to keep things opened up. It was painful at first, but then I found that I really needed a larger one, so I ordered a set of 4. I am now up to the next to largest one and it has really helped. I don't know if I will ever graduate to the largest one or not, but perhaps it's not necessary. I would highly recommend getting a set of these and using them several times a week. I, too, believe that anal cancer is not as rare as is thought. I think there are a lot of people walking around with this disease, being told by their physicians that bleeding is being caused by hemorrhoids. Also, colonoscopies are great, but they are not the procedure to best find anal cancer, so it can be overlooked even when both patient and doctor think they are doing everything possible to find the source of bleeding. More education for the general public and physicians is definitely needed!

I hope others will share their experience with you. I wish you well and continued remission.

Martha

By Percyfaith
Posted November 15, 2009 at 4:13 pm
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Thank you Jamiegirl. I am interested in Juicing and eating more raw and vegan. I am not vegetarian but I do think that for intense healing you need to fast from your normal ways. Juicing would be a way for me to do that. When I can I plan to follow a few health Gurus, Raymond Francis (Beyond Health), Jordan S.Rubin, N.M.D., Ph.D. (The Maker's Diet), Harvey and Marilyn Diamond (Fit for Life II), Mark Hyman, MD. (Ultra Prevention) and mostly Dr. Schulze (The Herb Doc). I will put God first by daily study of Bible Doctrine from Bobby Thieme from Berachah Church in Houston TX. http://www.berachah.org/. -a Christan Grace ministry that offers free bible lessons. Lessons that have changed and guided my life for the last 40 years. Every day I also need to praise God in prayer and thankfulness, exercise, breath pure air and drink pure water and sleep a lot more- A Great book about sleep is "Lights Out: Sleep, Sugar, and Survival", by T. Wiley. God Willing I want to learn to help others with Cancer and Cancer Treatment Recovery.

By calla53
Posted November 15, 2009 at 5:07 pm
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Martha,
I too had the dialators, but they were given to me a while after my radiation was finished. I was never told I'd loose my vagina!! I have the whole set of custom acrylic dialators. I had suffered such extreme burning from the radiation that I had to be hospitalized with opium & other intense painkillers so I couldn't have used them even if I wanted to. I got what they think was encephalitis from the burns or maybe from pin holes in my bowels from radiation. After healing enough to use my dialators my gyno doc gave me a stent to work with & I actually did see some results, but intercourse is not in my future. I have a very understanding, supportive & loving husband.
A friend I met through one of my docs. is 3 yrs. in remission with rectal cancer & she has been working with dialators with hardly any results. Someone she's in touch with had her vagina "rebuilt" as the result of vaginal stenosis & in the process they punctured her bladder causing her to get a catheter.
My vagina is only about 2" deep & 1/2" opening. Bummer.
You're a lucky girl, I'm glad you had good results with the dialators. Education is the answer.
Barbara (calla53)
calla53

By Percyfaith
Posted November 15, 2009 at 5:10 pm
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Bless you Martha (both Martha's dealing with anal cancer) I will pray for you both on your journey to healing and health.
Love and Prayers.

Do you know of any site devoted to only Anal Cancer survivors?

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