Wednesday, October 21, 2009

Carcinoma in Situ
(photograph taken by euthman found on Flickr)
The Biopsy results are in.....
Cancer locked within a cell membrane.
This is what I have.

VIN 3 non HPV related cancer.(Vulvar Intraepithelial Neoplasia, grade 3)

The more technical term of having cancer of the woo woo years after a hysterectomy.

I toiled about whether to spell it all out or not. I thought about it being Breast Cancer awareness month and all- I felt that perhaps if you are not embarrassed too much by having to read about my bird cancer then you might learn something you didn't know.....and perhaps it will help you know what to be worried about if you are over 40 and under 100 if your woo woo changes...

Yes of course I am being funny about it! Because it sounds a lot better being funny calling it woo woo cancer than Vulvar Cancer of the Labia Minor (blech)

Geography lesson: the labia minor is a small flap of skin on the edge of the vagina, and labia major is the larger flap of skin on the other side. The Vulva is the outside visible area of the woo woo (LOL)
This cancer was caught because of an unrelated examination of cyst, and the dark mark was noticed by the gynecologist when he was checking out the cyst right below it.

Mine is a black dot with a white rough edge. When vinegar is placed on the spot the white raises up and looks wet. That is the first test. The second test is a surgical biopsy using a core punch device that takes about a 3cm cylinder of tissue from the spot. Then a couple of stitches.... If the dot and white rough edge is lumpy like cauliflower then it would be HPV infaltrated as well. Mine is flat. The flat stuff eventually becomes a flake (mine is not a flake yet) then it becomes Lichens disease. Very similar to what skin cancer looks like.
If you have ever seen a tanned person with white flakes on the back of their hands or arms or ears or lip, this is Lichens in the external form. On a mucosal membrane it is then categorized as a Vulvar cancer and not caused by the sun, but effecting the cells in the same way as squamous cell cancer on the rest of the body.

In latter stages VIN becomes insanely itchy. Then is spreads fast and can take over the whole of the vulva and clitoris and all of the vagina and even the bladder. Apparently that looks like little white bumps like razor burn bumps or clusters of larger lumps.
It is easy to mistake the bumps for razor burn or yeast infection or a pimple.
Once it becomes malignant it can spread to the lymph nodes, and rectom.

I had no symptoms. My mark is isolated and small. Mine is level 3 which means the next level worse and it is malignant. So you can see if you see some thing there or feel itchy it already could be greater than level 3.
If you are a teen and sexually active this is why you need to get a PAP smear every year. If you are an adult you definitely need to have a PAP smear.

Even if you have had a hysterectomy you need to have a partial PAP smear. They do it every 2-3 yrs after a hysterectomy, and it is a swab of the vagina and the hysterectomy scar in the vagina. I have mine done every 2 yrs.

If you get a lump, or a dark mark with uneven edges or white edges, or insane itching you have to go to a gynecologist. The early stages of this cancer (like what I have had twice now) is easy to cut out, but if left un attended or detected ,with this cancer, a woman could be severely disfigured from the excision and have to have multiple corrective cosmetic surgeries to look normal again.

A hysterectomy is nothing compared to the Vulvar surgery if it has to be invasive. They will dig deep into the pelvis to get out all of the cancer and you may not have use of your bladder or bowels again ever and losing lymph nodes means chemo and radiation.
Radiation and lymph removal make a person susceptible to lymphedema which is the pooling of lymphatic fluid in the legs and/or arms that is irreversible causing symptoms that look like elephantitis( swelling of the limbs as to create thick club-like limbs looking the size of elephant's legs)which is disfiguring and painful.

Girls that get HPV related cancers could get this cancer I have in a more aggressive form, plus have the terrible pollips to deal with. 6 out of 10 VIN cancers are HPV related. If you are young or you have daughters consider getting them HPV tested and get the HPV vaccination because I could not imagine how horrible it would be for a teen to get this and risk never being able to have a relationship or family ever because of being so disfigured.

HPV (Human Papilloma Virus) is a STD. It is caused by having too many sexual partners. From what I understand it is really common in teens today. I recall something like 75% of sexually active teens will have HPV.

Where I did not have HPV, if I did, my prognosis would not be as positive as mine is today......

So how does one get VIN? Well VIN means the cells are mutating. They are Neoplastic. They go from being normal cells to mutating and if the cell changes blast through the membrane then they become a malignancy.
Trauma can stimulate a cell to mutate. Trauma can mean almost anything. It can be trauma because of an injury (like falling on the bike crossbar) or having a tough vaginal birth delivery, or it can be because of trauma from a virus like HPV.
In my case it is trauma from another underlying condition that attacks my membranes.
The trauma could also be long ago, and the scarred cells can begin to change if the person is under severe stress which lowers immunity.

It all started with something completely unrelated..... a lump. More specifically a Bartholin cyst. A gland that makes that area moist got blocked. This can happen at any time and is easy to deal with a micro catheter. I have a gland disease so I have to have it checked out.

I was diagnosed with Sjogrens disease in 1995. It is an arthritis of every gland in the body that excretes. I have no saliva or tears, and problems with my pancreas, kidneys, and all mucus membranes. I have chipmunk cheeks from the saliva gland cysts, and similar problems in my esophagus. My Sjogrens is called secondary Sjogrens. It is secondary to another autoimmune disease, or in my case three other, so I have Osteo Arthritis, and Rheumatoid Raynods, and the third is the illusive tag of Lupus. It is a deadly combination for those with this multiple identification are super high risk for Sclaroderma, Diabetes, Cancer, and PolyCystic Lung Disease, and PolyCystic Kidney Disease. Basically my body is rejecting its organs.

This arthritis causes extreme distress to tissues making them break down. So the inside of my body is aging at an alarming rate. While the outside usually looks quite younger than my age. This combo distressed the tissue making me susceptible to Cancers. The arthritis made me susceptable to Shingles of the Brain which I got in 2005 (which also usually occurrs in folks over 60yrs of age)

It already made me a diabetic and caused me to have numerous surgeries before the age of 35. Now begins another cycle. I now get a cancer that only 70-80yr olds get....and I am 46.

So this year alone I had to add severe degenerative Osteo Arthritis, transitioning type 2 to type 1 Diabetes and Cancer to my list of new health issues.

I am usually cheery and positive almost all of the time.
I take it all in stride and accept my roll as: the human experiment for all of my specialists trying to figure out how they can write papers tying all my diseases together.
My Pain Specialist has admitted to me that me being so abnormal in my medical pathology really upgrades each Specialists' experience in medicine to know me....they all feel like HOUSE. LOL

I will admit whole heartedly that me the bubbley, and cheery and the positive high-spirited persona cracked a bit in the last two weeks. The health strikes this year had worn away at me, and my mood could not stay positive when they sprung a cancer diagnosis on me again.
I really began to worry for my family this time. I could see this diagnosis on top of all of the other medical problems this year was more than everyone could bear and we were all showing signs of strain after such a tough summer for my health.
I have had a lot of strange pain since February, so I just could not stay positive about this diagnosis, and I was really worried that I would present with some weird genetic cancer like Pagets and that the arthritis in my x-rays would have been bone cancer in that case.
In retrospect it is just a coincidence, but when you have serious pain then you get something else it is hard to ignore the pain from the diagnosis.
It is impossible to be cheery all the time in this situation.

I once again had to address my own death. I am 46 for pitty sake! I have had to seriously think about death being imanent.......again! I have had to do this 5 times in my adult life! And I don't mean a thought like, "oh I might die". I mean the kind of thing where you have to tell people where your will is and where your insurance papers are and your banking passwords etc.....I have had to do that 5 times already. I don't think normal folks have to do that! This can be extremely frustrating to face over and over.

So yes...I can be vulnerable eventhough I have this great zest for life.
I just wanted you to know that - yes- I can get down about stuff sometimes too, even if I don't
dwell on it for long.

I do have to do some medical maintenance now though. Today I go to the family Dr. to discuss getting a Urologist to do a cystascope to check the bladder for the same VIN....just as a precaution. If I had not already had a colonoscopy I would have had to book that too - to check for the VIN there too. PLus I will see if the diagnosis will up me in the protocol list for the MRI on my back and pelvis.

So I am back to myself, a bit tired but no longer under the influence of worrying if this is the one that will kill me.
I am now preparing for surgery.
Friday the surgeon and I plan the surgery.
Friday afternoon I get on with the rest of my life :)


Sue St Clair said...

You will be in my thoughts, and my prayers! Thank you so much for sharing this, I have learned a lot today about a cancer I never knew existed before. ((((Big Hugs))))

Spyrit Dancer said...

I am so sorry to hear you are going through this! I hope the rest of the tests end up negative, and they can isolate it and take care of it. You will be in my prayers.

And I'm going to make an apt. with a dr. as I have an exterior woo woo cyst and don't want it to turn into what you have, so thanks for posting about it. I might have helped save me too.

Fida said...

Lynn, I admire your positive attitude to what is happening with your body. Pain is the worst and can bring down the cheeriest of person. Don't apologize for it! I am sure everyone around you will understand! (if not, send them to me;-). It's almost too much to bare just to read about what you have to go through, so how would you not brake down once in a while?

I think of you, I wish you strength, I wish you good surgery and that they can remove it all.

I am glad you wrote about it - Thank you.

PS: Now I finally know what a woo woo is ;-)

Lynn said...

Thanks so much girls. My next post will have a thank you to everyone in it.