Cancer, why me? Why not you?....part two.

Hello friends,

Here is part two of the ezine series I wrote about the cancer journey I have taken. This will bring you to the beginning of my metastatic cancer diagnosis. To find out what happens beyond these two articles you can read the archived posts on my blog here, by starting with the oldest post and working your way forward. My hope is that sharing these deeply personal parts of my story with you, you will be helped or blessed, or educated, or reassured, encouraged. or all of the above.

Here is the 2nd half of the middle of my story:




I have shared in the past that I am a breast cancer survivor. Now I will share that I do not survive breast cancer, I live with metastatic breast cancer. You see, my cancer has gone beyond the breast and now exists in many parts of my body. Having spread to a major organ makes a cancer a metastasis. My breast cancer has spread to my lungs, chest wall lymph nodes, bones in my pelvis and right arm bones. For the past two years I've been treated for fibromyalgia. This was a misdiagnosis. But I won't go into the high rate of misdiagnosis in breast cancer and mets breast cancer. Instead, I will share this. The pink ribbon notorious for breast cancer awareness is no friend to women and the few men who have mets breast cancer. Less than 1 % of money raised for research goes towards studying or finding treatments or cures for metastatic breast cancer. You may ask yourself this, If Susan G Komen began fundraising for a cure in 1998, why more than 13 years later are we no closer to a cure?

This year in March, I discovered that the persistent cough I had suffered for months was caused by fluid in my lungs. On biopsy this fluid was found to be metastatic breast cancer. Further test by PET scan showed the cancer to be in my arm, pelvic area, and chest wall. As of now I have had 4 procedures to drain my lungs. Which is insert a needle into your lung to drain the fluid so that you can breathe. Since diagnosis I have received 5 chemo therapy treatments. My lungs no longer are filling with fluid, I can breathe, and I have energy. The drugs that are used to treat me are Taxol and Avastin. You may have heard of Avastin in the news recently. It has been decided by the FDA that Avastin isn't a drug that benefits patients with mets breast cancer. The original studies found the drug to extend the life expectancy by 5-6 months. The FDA disputes that claim stating that the study really reveals a life expectancy of 1-2 months. I ask you, if you could have 1-2 extra months of life would you take it? I know I would. The side effects of this drug are high blood pressure, nose bleeds, and possible intestinal problems. There are a few a law suits pending due to some of the side effects. This drug will continue to be used to treat liver, intestinal and brain cancer. The same side affects still apply.

Having just learned that the FDA has removed this drug as a treatment for my cancer is frustrating. They say that Doctors may still prescribe the generic form for mets breast cancer treatment. But in fact insurance companies will no longer pay for this. That would mean an average of $100,000 out of pocket from the patient. I am not independently wealthy. This paying out of pocket would not be an option for me. There are no drugs that I am aware of waiting in the wings with as much promise as Avastin has at treating this disease. So far I have completely stopped all tumor growth. My lungs have cleared, and my energy has increased. My quality of life has gone from being sick and weak to being active and energetic. The FDA's decision has left me sad and worried. This is not a place that is healthy for someone who has a shortened life expectancy to be in.

Let me leave you with this, if you have any lumps, bumps or swelling, do not let a Dr tell you it is probably nothing. I had a radiologist tell me this. I asked him, If he had a lump or swelling on his testicle, would he just ignore it because someone told him it was probably nothing. He said he would get it checked out. Of course he would. It is different when the problem is yours and not someone else. So, if you have a lump, pursue getting it checked out. Even go as far as demanding a needle biopsy. It could save your life! If not for the insistence on pre-surgical testing for my recently cancelled breast reconstruction by my cosmetic surgeon, I would still think I had fibromyalgia and would not be receiving medical intervention. Get mammograms, and insist on follow up on anything you find that is suspicious.

Leslie Bowlus url: http://www.missditz-thebeautifullife.blogspot.com

Article Source: http://EzineArticles.com/?expert=Leslie_Bowlus

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Thank you for stopping by,

Leslie

Looking at life through a pink ribbon haze

The following is not opinion these are fact that I state sources for. So, in advance of reading this article I ask that if you get angry, don't direct it at me. While I state that I am saddened by this information, I didn't come up with it out of the top of my head. You can google it yourself and come up with the same information that I have found or just visit the source that I site.

Thank you,

Leslie

Just the facts on breast cancer's pink initiative. Don't get me wrong, I think breast cancer awareness is a wonderful thing. It has been a terrific boon for the drug companies. Does that comment seem strange to you? Let me clue you in to some irrefutable facts.



Fact one: there isn't any place on this planet that a person wouldn't recognize a pink ribbon as the symbol for breast cancer. ( info from Susan G. Koman wikipedia page that states: Today, Susan G. Komen for the Cure is active in over 50 countries with its largest affiliates in Italy and Germany.)



Fact two: Out of all the money raised in the walk for the cure, race for the cure and other such events, as quoted in a New York times article January 7, 2011, "only 1% of the $5 billion annual cancer fund was devoted to any stage IV (metastatic) cancer, despite the fact that stage IV causes 90% of cancer deaths."



Before adding more facts I just want to go on record as saying that I think this is really sad. Let me educate you. There is a big difference between having localized breast cancer, having it removed and then receiving either chemo alone or with radiation, and a woman or man having metastatic breast cancer. The woman or man with localized cancer will be pronounce cured at the end of their treatment. The patient with metastatic breast cancer is told as I was that you will be on one form or another of chemo for the rest of you life, and most likely this will be what you die from.



Fact three: Just in the USA 155,000 patients a yr are diagnosed with metastatic breast cancer. 90% of the people who die from breast cancer are metastatic patients. Again only 1% is used to research this killer disease. ( info from American cancer society)



Fact four: All the money raised for research does not go to research. All those little goodies you get for "free" when you participate in an event that is to raise money for research are actually paid for out of what the event raises. Not to mention the overhead that comes right off the top before any of the money is actually given to researchers. By overhead I mean media (print ads, commercials and awareness information, and literature, magazine ads) Not all of the people who work a fund raising event are volunteers. Some of them are paid staff and are paid out of the funds raised. Where else do you think the money comes from? My source for this information is the Mets matters blog, The cancer chronicles, I hate cancer, and breast cancer news.



Fact five: 45,000 women with mets breast die from it yearly. The majority of patients with localized cancer (just in the breast) have treatment and considered cured at the 5 year mark with no reappearance. S.H.E.circle.org states that survival rate at the 5 year mark of women with localized breast cancer is 97%. 178,480 are diagnosed each year with localized breast cancer.Try as I might I could find no figures on the rate of death in patients with just localized breast cancer. By my math that means that 5354.4 women with localized breast cancer die yearly in America. I did find an obscure article from 1999 that states women who die of localized breast cancer usually die as a result of secondary infection post surgery or die from surgical complications. ( info comes from the American breast cancer society, wikipedia, answers.com)



You may be reading this and think "Gosh she sounds angry" I am not angry at all. I have what I have and I deal with it daily. It is just a part of life now. Most people don't know what will probably take their life. Unless I get hit by a bus, this is probably it. If I am angry about anything it is that we are lumped in the pink ribbon contingent. I don't see myself that way knowing how little is spent to find a cure for me. I am definitely not a part of the pink army. But while I did have localized breast cancer and didn't know all the facts, I was blissfully unaware and drowning in a haze of pink.



Let me leave you with this. I am blessed beyond measure with supportive family and friends. I am blessed to have a situation like this show me who my real friends are and the ones who are just there during the good times. I am blessed to live in a free country. I am blessed to have a relationship with Jesus Christ my savior. I thank God for my life, and I thank God for YOU!