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Just some information which "may" help your journey

Posts: 2
Joined: Jan 2012

Hi, I'm a 48 yr old female from Sydney Australia and hope some of the following information helps anyone who has been or has a love one diagnosed with anal cancer.

I was originally misdiagnosed in October 2009 - GP (my family doctor wasnt available) alleged I had a very small "tag" from a previous haemoroid. In May 2010 the same "tag" was diagnosed as a squamous cell carcinoma which had spread to my lymphatic system, groin and pelvis. My treating specialist informed me I was the 5th patient that year who had been referred to him after being originally misdiagnosed by a general practitioner. Once I was over the initial embarrassment I started spreading the word.

First lesson. Any lump, lesion or foreign body that shouldn't be present in the first place - insist on it being removed or tested by biopsy.

I was Immediately referred to a radiation oncologist who advised me treatment would be severe BUT he was going for a cure. The doctor asked me to trust him, explained it was imperative I remove all other stresses from my life and basically to hang on for the ride.

My family situation was this. I WAS married with two teenage children. The main stress in my personal life related to a narcissistic husband who had one personality reserved for myself and our children, and another personality for work associates and friends. My husband craves attention and I was concerned how he'd handle people's concern for my well being, rather than him being the focus of attention. My head told me to pack the kids up and walk there and then, my heart hoped that the news of my diagnosis might bring out the best in everyone.

Treatment was the same as everyone else's. I was radiated in 6 different areas, front, back, both sides and two more over the groin areas. First round of chemo was disgusting and my radiation injuries were horrendous. I found the second round of chemo a lot better, but I suspect my then Onchologist (whose only part was to prescribe the dose of chemo) changed her prescription to a lesser dose.

I followed my Radiation Onchologist's advice and smothered myself in Lucas's Papaw Ointment. I'm going to be blunt, as it was winter here, I lived in track pants and eventually took the nurse's advice and wore no 'undies'. Was burnt inside and out, but like most other reports, about two weeks after radiation ceased, I started to heal quickly.

Second lesson, any women still having a menstrual cycle, ask your doctor to prescribe something to stop your period before treatment begins. I was beside myself when this occurred during my first month of radiation. I was also WRONGLY advised by a nurse that I could use tampons. When I realized the mistake I was extremely distressed.

Third lesson. The itchiness that came from the radiation severely affected my sleep, it was sending me crazy. After weeks of midnight 'googling' possible remedies, I thought perhaps an antihistamine (used for allergies, itchiness) might help. God bless the manufacturers of Aussie
products like Telfast and Zyrtec. I immediately passed the information onto my hospital team who advised other patients. The itchiness was then manageable.

Fourth lesson. Typically, as time went on, I researched the topic on the Internet and was literally beside myself when I learnt of the after affects of the radiation. I wish I had investigated everything before I started treatment, including natural remedies. I'm not saying I would have taken another route, but I was overwhelmed, injured and dealing with a sad personal life. My mind didn't cope well with the additional information I was learning.

Fifth lesson. I quickly recognized the signs of depression, which I had never dealt with before. It took me some time to be convinced that antidepressants were essential for my emotional well being. This was also the first time I had ever considered seeing a Pychologist (not the norm in Australia). My advice to everyone, get yourself a great Psychologist straight away. Just touch base and should the need arise, more regular sessions can be implemented. My Psychologist specializes in cancer patients. Remembering the situation with my personal life, couple with my diagnosis and treatment, depression was possibly guaranteed. And I'm going to make a statement here that I hope does not insult anyone, I could handle the cancer treatment but found my depression the most debilitating illness I had/have ever faced.

Sixth lesson. Within weeks of finalizing my treatment plan I caught my husband having an affair with a work associate. The signs were present throughout my ordeal but for the life of me I couldn't believe he'd lower himself to be that cruel. In October 2010, I did what my head told me to do five months earlier, although, as I now had proof of the affair from reading text messages on his secret mobile, I was able to make my husband leave our home instead of the kids and I walking. Lesson, I should have followed my head in the first place. I'm positive I would have coped sooooooo much better during my treatment if not having to endure my husband's disgusting behavior, whilst he still presented to outside family, friends and especially work colleagues, that is was a wonderful, caring husband and father. My advice, if you are in the position my make changes to any major stresses in your life, do so at the earliest opportunity.

The scan taken at the end of treatment showed no signs of cancer. With the breakdown of my marriage, my radiation onchologist was extremely concerned and cared immensely about my emtional well being. His advice at the time, "You are cured of cancer. I'm not discussing what if! You've been to hell and back. Take as long as you need off work, try to relax. It's extremely important you stay calm."

As much as I tried, my anxiety levels went through the roof over the next few months. I wholeheartedly believe this had a direct affect on the results of my next set of scans. In May 2011 my cancer had recurred. The cancer is now present in lymph nodes at the end of my aorta, in my neck and has metastasized to my lung. Its also possible my original treatment hadn't cured me, the cancer was just too small to show on the ct scan. I don't know if there are any more precise scans available overseas, but if there are, and you can financially afford it, use what's available. I wasn't eligible for a P.E.T. scan. If I had known cancer cells where still present, I would have immediately investigated further afield, which would have led to earlier changes in my diet and a more wholistic approach to my disease.

I have to be realistic here. I'm now a single parent. Neither of our children wish any contact with their father.

My Oncologist can't say how long I have. Treatment has since been chemotherapy for four days followed by a two week break, 3 week cycle. I know chemo can't last forever and unfortunately, we don't have a lot of other 'proven' defences to fall back onto. I wouldn't say I'm cranky, but disappointed anal cancer doesn't get a lot of funding and as such, from what I've been informed, there's not a great deal of research going on world wide.

Presently my cancer is stable. Last two scans have shown no change. Other than chemo week (man I hate feeling nauseas) I'm in good health. I had changed my diet (faulted over Christmas) to no diary, no red meat, trying to eat organic, no preservatives and less than one glass of alcohol each day. I also take a handful of Tibetan herbs three times a day and remedies from a Naturapath.

My stress levels are nowhere near where they were in 2010. For the most part I'm calm. Every doctor I have seen has stressed, in no uncertain terms, it is very very important to keep my stress levels to a minimum, especially during and after treatment. I have no doubt my anxiety levels hindered the effectiveness of my original treatment. I know it's never been proven, but what pharmaceutical company is going to invest millions on proving emotional stability and well being assists in the cure of dreaded diseases.

In closing, I'd like to reiterate, if I had a chance to start over again I would have;

1. Asked the doctor I saw originally, who diagnosed my lesion as a "tag", to refer me to a specialist for further investigation.

2. Once diagnosed, immediately removed any major stresses from my life. This was a very delicate situation and I know I'm making this point in hindsight, having the knowledge of how disastrous the ultimate outcome was.

3. I don't know if I, at that time, had the ability to investigate other treatment options, or if I was in the position to obtain all the information relating to short and long term side affects from chemo and radiation. But knowing what I do now, I would have enlisted friends and family to help me in this regard. There's a book called, "The patient from hell" by stephen Schneider, essential read. If only we all had Stephen's intelligence to fall back onto :-)

4. I wish I had my Psychologist in place well before her services were really needed. I believe Jemma was a major factor in my ultimate recovery. Same with antidepressants. Even after I recognized I was developing severe anxiety and depression it took almost a complete breakdown before I accepted medication.

I apologize for spelling and grammar. My iPad battery is about to die. My warmest and best wishes to everyone.

Leanne x

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