In recent years, cancer policies have become more and more common. These allow for payment of benefits which can be used towards rent, groceries, medical bills and a host of other expenses when you are dealing with cancer and are unable to work.
Quite some years ago, a pathologist by the name of Ralph Richart developed the terminology commonly used today of intraepithelial neoplasia. "IN" can be preceeded with a C for cervical, V for vulvar, Va for vaginal and A for anal. This post deals with a diagnosis of CIN3 or cervical intraepithelial neoplasia grade 3.
Previously, there were four classifications of dysplasia/precancerous lesions grade 1 through 3 and the fourth being CIS or carcinoma in situ meaning cancer in it's place and not yet invasive. The difference between in situ and invasive is whether or not the abnormal cells have crossed the basal layer of the epithelium. CIN1, 2 and 3 indicate how much of the epithelial thickness the abnormal cells occupy. 1 = 1/3, 2 = 2/3 and 3 = 3/3 or all, down to but not passing beyond the basal layer.
There has been a lot of confusion lately regarding CIN3 and CIS with many people (including some healthcare professionals) claiming that these are two distinctly different entities. As a result, some people are having their cancer policy claims denied. Many policies will state that by their definition cancer includes CIS. However they will then go on to deny the claim if the patient has a diagnosis of CIN3. This is utterly absurd and nothing but sheer semantics. It is in fact, a combination of two sets of terminology, the old CIS and the new CIN3 and is about as useful as trying to compare apples and oranges.
There is in fact only one diagnosis code (ICD-9 code) for both of these 233.1 because they are synonymous. However, patients are losing out on their benefits because insurance companies certainly don't race to update the terminology in their policies or to pay out peoples claims. If they can deny a claim with this excuse all the better for them.
Patient's need to know to dispute this if their insurance company denies their claim for this reason. A letter from their physician should be sufficient.
http://arpa.allenpress.com/arpaonline/?request=get-document&doi=10.1043%2F0 003-9985(1999)123%3C0993:IITTRT%3E2.0.CO%3B2
http://www.faqs.org/abstracts/Health/A-modified-terminology-for-cervical-in traepithelial-neoplasia.html
Hopefully this will be helpful to any of you who have had this experience, or who run into this experience in the future.
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Oh no Bonnie, I am so sorry. I will continue to keep you in my thoughts and prayers. I hope that if the cardiac tests do show something, it is at the super early stage and like you said it can be addressed and treated now. I also hope it will not affect your next course of chemo. I'm glad that you are under the care of more than one doctor and I hope that the edema turns out to be caused by something else. As you can see Bonnie you have a lot of support and fans on this website. We are all rooting for you and wish you nothing but the best. Please post again or have your daughter post the next update on how things go tomorrow. Big hugs, Michelle
August 3, 2009 - 11:48pmThis Comment
UPDATE: Well I ended up at the ER last night because I developed pitting edema in my ankles and the oncologist was afraid of a blood clot which can be caused by the chemo. After doing an ultrasound they found no clot and sent me home.
Saw oncologist after radiation this morning and he gave me a diuretic and potassium to reduce the edema. Talked to my general practitioner and he was concerned that oncologist didn't send me for cardiac workup since I have no preexisting conditions which would cause this edema. He believes that this is chemo induced congestive heart failure and if has not gone back to normal by the time I finish my radiation tomorrow, I have to go to his office so he can take a look and then is putting me in the hospital for a cardiac workup for two days. He is afraid if we don't address it, I will end up in full blown CHF. Not good because this then throws up in the air what will be done about the next course of chemo. Will I be able to get it? If not, that will drastically affect my treatment outcome so I'm quite scared at the moment.
I will try to have my daughter post an update.
Bonnie
August 3, 2009 - 9:29pmThis Comment
Kudos to you for your strength through this ordeal & the willingness to share your story. I have learned so much more about the disease from reading your posts. I am so sorry you are going through this & hope that things start looking up for you soon.
August 3, 2009 - 9:50amThis Comment
Thank you everyone! I have truly been blessed in my life in so many ways. One of those ways is the professions I have been in. I am an RN so obviously I have that perspective but can speak not only to other women and patients but to medical professionals as well. I also spent over 12 years as a medical practice administrator. Part of my responsibilities were to oversee the billing and coding and to negotiate managed care contracts. I was able to learn the insurance side of things as a result and can therefore address this issue from that perspective as well. It has all fit together very nicely and while I have at times complained to my girlfriend about having to go through all this, her response was "everything which you have experienced regarding all this (dysplasias, cancers, surgeries and procedures) with HPV has lead to this point in your life and being able to use all that experience to help others." Quite true. I am gratified to know that my posts are helpful and informative - that is my purpose now.
Bonnie
August 3, 2009 - 9:24amThis Comment
Bonnie:
I just read your story and checked out the site you noted above. I know several people have already noted this in their responses but YOU are amazing. I will continue to follow along with your posts. I think women really need to read your posts to help them, not only understand HPV, but understand the ins and outs of dealing with insurance companies if they or a loved one is stricken with cancer. Please keep posting and we will all keep readying and working to to help drive awareness around these issues.
You are amazing.
Kelley
August 3, 2009 - 8:46amThis Comment
Hi Bonnie: I admire your bravery and spunk in working through all of this AND writing a book to help other women.
August 3, 2009 - 8:00amThis Comment
Thank you Michelle and NDF for your kind comments. Actually, I just returned home from the Emergency Room. One of the things on my "call immediately if you experience" list from the oncologist was foot/ankle swelling. So I called immediately and was told to go to the ER as he was concerned about a blood clot. No blood clot thank God, but now concern of perhaps heart damage from the chemo. One more bridge to cross tomorrow. I'm only up now as I am having pain and cannot sleep.
I am quite vocal when it comes to advocating, especially for myself as I had to learn to do this very early on in my HPV diagnosis (1987). However, it is very difficult at this time for several reasons. My only family are my 17 year old daughter who lives with me, and my 25 year old son who lives 5 hours away and is unable to be here because of his line of work. He calls every day, and when he can, he helps out financially. We are relocated here (originally from NJ) and I do not have friends to speak of here and as a single mom it gets difficult.
I am receiving 2 radiation treatments a day and travel back and forth from home (my daughter drives me). In between I am exhausted and just want to sleep. Obviously, I am unable to work at this time and when it comes to obtaining assistance I'm left having to do this myself when I'm extremely fatigued from treatment and would/should be resting. Others cannot make these types of calls/appointments for me because of privacy issues so unfortunately outside of a family member there is no one else who can do this for me besides the hospital social worker. He has been resistant to do anything more than provide lists of more phone numbers to call. It is very tiring and frankly quite exasperating to have to repeat my situation over and over with each phone call. However, I'm working on getting him to do more in the way of obtaining much needed resources for me.
I would never have brought this up, but since you two asked................ My website is listed under my profile. Because of the recent events, an additional page has been added to my website. It can be accessed from the home page and the link is very obvious on the left inside a red border. If you would take a moment of your time to read this new page and respond as you see fit, it would be very much appreciated.
Thank you again for your words of encouragement and support. At this time, they are more important that you could ever know.
Bonnie
August 3, 2009 - 12:34amThis Comment
Dear Bonnie,
I am very sorry you are dealing with anal cancer right now. But you sound like an amazing woman and I am confident that you will beat it--you can tell from your posts what a smart and positive-thinking person you are. Like Michelle, I am so impressed that you are taking the time to help others right now. I'd like to help you in some way but I'm not sure what I can do--please tell us what we can do for you!
Your posts are very timely as I have a dear friend who has a friend who may be dealing with this issue herself very soon...she is in the testing phase right now but depending on what her results are I may be forwarding her this information.
Take care, Nancy Drew Fan
August 2, 2009 - 11:16pmThis Comment
Dear Bonnie,
I cannot believe you are advocating for others while you are battling HPV induced anal cancer. You're amazing!!! I've met more women who've been diagnosed with anal cancer in the past few months. Maybe its the awareness women like you have brought to the forefront about anal cancer. Is there anything we can do to help you? How are you holding up with the radiation and chemo?
Sounds like you've been an amazing advocate for yourself as well as for others. Do you have someone you can count on who can advocate for you? It's our turn to help you. If there's anything, anything at all we can do for you....i.e. resources and/or anything else you might need, please do not hesitate to ask. We will advocate for you anyway we can!!! I mean that. That's why I created EmpowHer.
You are one extraordinary woman...that's all I can say. I will keep you in my thoughts and prayers. Please let me know how you're doing.
Big hugs,
August 2, 2009 - 8:38pmMichelle
This Comment
Michelle,
I have not been on EmpowHER for some time because of significant side effects resulting from my treatment. I did notice that you subsequently did a video discussing anal cancer.
May 17, 2010 - 10:56amI am writing to let you know that my book, Any Mother's Daughter - One Woman's Lifelong Struggle with HPV has been endorsed by the Gynecologic Cancer Foundation in conjunction with The Society of Gynecologic Oncologists. A link for the book will be included in their new National Cervical Cancer Prevention Education Campaign.
I am very honored to have received these endorsements from two such prestigious organizations. It is so important to increase the publics awareness regarding HPV. The virus is now identified as being 99% responsible not only for cervical cancer, but as the cause in 90-99% of anal cancers as well.
The book's foreward was written by the 2008 Nobel Prize winner in medicine, Professor Harald zur Hausen, MD who discovered the link between cervical cancer and HPV. He recommends the book not only for lay persons, but healthcare providers as well.
My goal is not only to educate patients, but for healthcare providers to read the book as well. Not only does it provide up-to-date medical information but allows the physician to see the circumstances from the patient's point of view thus giving them a better understanding from which to care for their patients with HPV and HPV induced disease.
This Comment