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Oleander53
01-26-2009, 07:51 PM
I got the news I have Bowen's today. My Path came back Carcinoma in situ......

Long story short.....found a small flat lavender spot in my genital area. Did not hurt or cause any problems...they took it out last Thursday and today I had swollen glands in my neck, armpit and groin...I feel like I have an infection in the biopsied area. I then got the news of Bowen's.

My Dad had 6 melanomas and my brother had one so I was happy it was not a melanoma but I am upset.....I know this is not good......

Does anyone here have any experience with this? Thanks for any input and just being here to talk too....

I am on the thyroid board mostly............ Oleander

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Rockford2
01-26-2009, 10:48 PM
so sorry to read this, Oleander. You have helped me and so I want you to know I am here if you want to talk.

I found an itchy mole in my scalp yesterday, so I will be back to the doctor's office on Thursday. Does this ever end? I do NOT want to live my life worrying about every mole I see!

Oleander53
01-26-2009, 11:34 PM
Thanks so much.....I know I worry about every mole, new spot, anything that itches.....I pushed for this to be off because of the lavender color. 2 of my Dad's Melanomas were lavender colored.....

This cancer I have is a Squamous Cell Carcinoma. I am reading up on them this evening...

As much as I have read about skin cancer I have not read much about it in the genital area.......turns out it is not that uncommon. Men and women alike.

I appreciate knowing you are here. I also know how you feel about your worry.......thank you for your support.

I will let you know when I know more about what my treatment options are.

Sincerely, Oleander

Rockford2
01-27-2009, 08:36 AM
My Mom has this 'Squamous Cell Carcinoma,' but I never heard her say "Bowen's disease."

Is Squamous Cell Carcinoma just like melanoma? Do you know much about this?

Chele60
01-27-2009, 04:31 PM
Hi Oleander,

I have had one melanoma, but my mother had a squamous cell cancer. Scary to hear either, isn't it? Although yours is in a very uncommon area, squamous cell is actually more common than melanoma, far more treatable, and far less deadly. I know it all seems so frightening, but there can be a silver lining.

Good luck!

Chele60
01-27-2009, 04:42 PM
Hi Rockford!

Squamous Cell is far more common than Melanoma and not nearly as deadly. Squamous cell is typically a surface cancer, while melanoma affects the deeper layers of the epidermous. Left untreated long enough (and it is usually really long), squamous cell can become deadly, and there have been people who have died of this type of skin cancer. However, usually squamous cell was left untreated for long, long periods of time. Squamous cell is caused from sun damage, but can also be caused from simply aging. Melanoma may be caused from sun damage, but there is also speculation there might be some genetics involved. Melanoma is extremely aggressive and can be a fast growing cancer. Squamous cell is very, very slow growing. Treatment for squamous cell is to remove the skin surrounding the affected area, in most cases. MOHS surgery might be involved, and depending on the area, cosmetic or reconstructive surgery may be required.

That's about what I'm familiar with!

Rockford2
01-27-2009, 10:48 PM
Missed you, Chele!! How are you doing? And thanks for the explanation. I went from not knowing a dang thing to knowing a lot and I owe it all to you!!

Chele60
01-28-2009, 12:17 PM
Missed you, Chele!! How are you doing? And thanks for the explanation. I went from not knowing a dang thing to knowing a lot and I owe it all to you!!

Hi There! I've been fighting a sinus infection, but other than that all is well. I hope all is great with you!

As far as what I know, well, I owe a lot to my doctor. Her first words to me were "DO NOT freak out on what you find on the Internet." Which is exactly what I did. She helped to calm me down, and then I started some serious research to balance out the horror stories. Skin cancer is very serious business, but there is a lot of misinformation out there.

Okay, off my soap box! Hope you and Oleander are having a great day!

Oleander53
01-29-2009, 05:28 PM
I try to respond via blackberry. Ice storm with no power 3 days now. Thanks for all the great replys and knowledge. Looks like Bowen's is in my Dad's medical record. Must be genetic also. I see the Derm Onc on the 3rd. My outlook is better right now. My lymphnodes have settled down since starting anitbiotics so I am relieved of that. Oleander

Chele60
02-02-2009, 12:45 PM
So sorry to hear about the ice storms - YIKES!

Glad to hear about the lymph nodes settling down! Good news, that. Sending good thoughts for tomorrow!

Oleander53
02-02-2009, 01:28 PM
I just got the final path report :(

Margins are not clear but Positive........ so I will have to see what the Doctor says tomorrow........

Oleander

Oleander53
02-03-2009, 09:47 PM
Well I saw the Dermatologist today. He was very nice. He looked me over head to toe. Then between my legs:eek: Well he could see more cancer where the first Doctor missed it so he said it had to come out NOW. So he cleaned up the margins and sewed me up.

We had a long talk about genital skin cancers and how they are not talked about.

He is going to read my first slides and will send out for a 2nd opinion if needed. He said if the margins are still not clear on this 2nd cut I will have to see a Oncologist Gynecologist for a more radical surgery. He was pretty direct with me. So I get the results next week. I can do my homework on finding a good Onc Gyne in case I need one. My gut tells me I may need one. He also said I would have to be checked every 3 months for a year.

He also told me that Bowen's Squamous Cell Non HPV cancer is usually from an envirormental arsenic exposure. Like pesticides and such. Sooooo I guess I need to research that. He asked me where I grew up.

I was really happy he did not find anything else on me that he felt needed to come off right now. With my Family history of Melanoma that made me happy.

Thanks for listening......any thoughts or ideas? I will let you know what my results show when I go to get my stitches out.

I only cried once today.......welcome to Planet Skin Cancer

Oleander

teapotlady
02-03-2009, 11:00 PM
Planet skin cancer, oh yes I hear you. I haven't cried yet, makes it seem serious and I am not ready yet to admit it is, denial rears it's ugly head,LOL. I hope all your margins come out clean. I will have to be checked every 3 months also.

Oleander53
02-04-2009, 12:49 AM
Thank you Teapotlady,

I am Keeping you in my thoughts... we will help each other through it.

Sincerely, Oleander

Chele60
02-04-2009, 12:34 PM
I'm so sorry to hear this. Hopefully, with this second cut, the margins are now clear. And yes, a good oncologist is probably your best bet right now.

I will continue to keep you in my thoughts that everything will turn out for the best.

And welcome to the "once every 3 month" club!

Rockford2
02-07-2009, 03:56 PM
I'm afraid to see my dermatologist next month! I'm thinking of canceling.....who wants their whole body checked out? I found the first melanoma, so maybe I can check myself out.

Oleander53
02-07-2009, 04:17 PM
NO Way or I will drive up there and take you myself :jester:

You need to go and be checked over thoroughly in places you cannot see yourself.

Do not be afraid. Please make sure and go........NO cancelling allowed.

I am terrified about hearing my results on Tuesday but knowledge is power. Please do not delay your exam....

C'mon.......they were all looking at my You know what with a huge light and magnifyer :eek: He had on like a Miners Hat with a light :dizzy: LOL

We are all with you here on the Board...

Sincerely, Oleander

Rockford2
02-07-2009, 09:27 PM
oh you seem to know me so well already, Oleander! I thought I was through all that embarrassing crud when I had a complete hysterectomy back in 2007, and now this??? Even the darn surgeon wants to see me every 3 months!! The melanoma was caught early!! They took it out. Why keep worrying about this?

I honestly just want to forget about it all. I feel fine. Why keep looking for trouble is what I'm thinking.

I really wish all of you could come with me, but just knowing you and Chele are here makes me feel so much better. You both have helped me more than I could ever tell both of you...

I will be here on Tuesday awaiting for you to tell us what happened. No matter what, we are here for you!!

Chele60
02-09-2009, 02:46 PM
You can do this. Really. You can.

I know what your visions are like - standing in a cold room completely nude, while some doctor pokes and prods with a magnifying glass, right? Well, not quite. Most doctors try to make this as comfortable as possible. They usually will check one area at a time, and let you keep the other areas covered with one of those paper robes. I know the first time I went I had the same attitude you have. And when it was over, I found it wasn't so bad. Not my idea of a great time, you understand, but there are worse things in life.

What I found helped me was to get a female dermatologist. I just feel better. I had a male surgeon, and he had to do a skin check when he first saw me. He tried his best to make me comfortable, but he had to call the receptionist in, and it, well, I just didn't care for it. When it came time to select a dermatologist, my surgeon was recommending all these male doctors. They were excellent as far as melanoma went, but they were still guys! So I searched out a female dermatologist who specializes in melanoma, and I've just felt so much more comfortable with her. Plus, it's just me and her in the examination room.

Just a note: the first skin check is going to be a bit unnerving. However, once you've built up a bit of a relationship with your derm, s/he will be working WITH you on areas of concern or suspicion. So it would be helpful for you to do your home monthly skin checks and bring up areas that are of concern to you to have the derm look at. Good luck!

Rockford2
02-10-2009, 08:22 AM
IF I decide to go, I will only go one time. I refuse to let this worry me for the rest of my life. If I see something, I will mention the funny looking mole to my regular doc, but I just think the dermatologist will just have me worrying way too much.

I'll be back online to night to see how your doc visit went and what they found. Good luck and please know I will be sending good thoughts your way!

Oleander53
02-10-2009, 07:43 PM
Well I just got back from my appt. A little confused. The biopsy the first Doctor did did NOT have clear margins. The second biposy the Derm did had clear margins. He re read the slides from the first biopsy and he said they were "terrible". He said it was hard to read but could tell it was Bowen's. Soooooooo. Can I assume they got it all? Sounded uncertain.

He said that Bowen's can sometime mean you have an internal malignancy somewhere. He says I should be looked at closely for this........So do I go to an Oncologist or Gyne Oncologist? He said I could go to either. I have an appt with an Onc Gyne next week.

I have talked to 2 women who had Vulvar Squamous Cell Carcinoma and they both felt the Doctors did not move fast enough on their cancers and they became invasive.They preferred an Oncologist to a Gyne Oncologist. I do not want to wait and find out it is deep and some was missed.

Any thoughts or ideas on this? I know I have or had Squamous Cell Carcinoma and Bowen's disease. I hope it is all gone.

I left and felt like I did not ask enough questions which is not like me. I guess I will just wait to speak with the Gyne Onc.......

Oleander

Rockford2
02-10-2009, 09:59 PM
Oh hon.....you were probably stunned and didn't know the right questions to ask. That happened to me. How about if you write down all of your questions and call tomorrow and ask the doctor to call you back when he has a minute? I'm so sorry, I wish I could help you more, but if it wasn't for you and Chele, I'd have no idea what melanoma was!

I'm always here if you want to talk.

Oleander53
02-11-2009, 12:00 AM
Thanks so much.....Oleander

mabent
02-11-2009, 12:34 AM
Hi Oleander - did you read my post on the Cervical and Ovarian message board? If not, please read it. If I were you, I would definitely seek another opinion. The doctor I saw was an excellent, caring gyn-oncologist. However, before seeing him, I went to another doctor - recommended by my GP, who took a biopsy and called me to say it was vulvar cancer. He sent the report to a gyn, who told me over the phone that he had done "lots of this kind of operation and after only looking at the report he was sure that I had invasive vulvar carcinoma". Of course, I was very upset but was fortunate to have yet another doctor recommend the doctor who finally operated. I saw him and made the appointment for the operation. Then, the night before the operation he called me and said that he had ordered a copy of the biopsy itself and had his radiologist look at it. They decided that it was carcinoma in situ; he asked me if I wanted him to remove it or just keep doing biopsies to try to get rid of it that way. I told him that I definitelywanted him to remove the entire lesion. As I said in my other post, it turned out that no lymph nodes were involved and that the margins were clear.(this was 22 years ago) My wonderful gyn did tell me that it could come back somewhere else in my body but that we would just check it every 3 months (as others have said) and that he doubted very much that it would come back. I really think that you shouldn't be satisfied until you have had another radiologist look at the biopsy, especially since two doctors have had different opinions. Find a doctor you feel comfortable with and who has done many of these kinds of operations, even if you have to go out of town to do it. Again, I wish you the best of luck!:angel::)

Oleander53
02-11-2009, 11:35 AM
Thank you so much !!! I did not see your post......Oleander

Chele60
02-11-2009, 12:45 PM
I'm confused as well. Are you saying the derm didn't give you any continuing care? Just another biopsy, margins clear, and now you're on your way? If that's true, I can understand where you are coming from.

My personal suggestion is to follow your gut reaction - it's usually not all that off base. If you feel you need a second opinion, get it. If you feel it would be best to consult with an oncologist in addition to, or instead of, an oncologist gync go for it. This is your health, your body, your life.

Oleander53
02-11-2009, 04:01 PM
Chele,

It was left up to me what I wanted to do. I have my records being reviewed by a Onc Gyne. I am hoping he will take me as a new Patient. If not I have 2 others on the list. I just feel I need more follow up.

I just got good news right now!!!!! Hurray...this Gyne Onc accepted me as new patient and can see me 3/4..... So I feel better now..


Thanks !!!! O

Chele60
02-11-2009, 07:17 PM
Wow, I can see where that would leave you feeling a bit confused and uncertain!

I'm glad your going to be seen by an Onc Gyne - that is great news. Hopefully this will be reassurance that all is well and no more treatment is necessary. I will be sending good thoughts your way!

mabent
02-11-2009, 07:55 PM
Chele,

It was left up to me what I wanted to do. I have my records being reviewed by a Onc Gyne. I am hoping he will take me as a new Patient. If not I have 2 others on the list. I just feel I need more follow up.

I just got good news right now!!!!! Hurray...this Gyne Onc accepted me as new patient and can see me 3/4..... So I feel better now..


Thanks !!!! O

I can imagine how relieved you are! The gyn-onc I had told me that most gyns would not know the signs of a recurrence of Bowen's Disease (remember - this was 20 years ago!) and that that was why he wanted to be sure I would be seen by a specialist. This suggestion was because he was considering retiring :( ; and he did retire. Fortunately, he retired 10 years after my operation. Since then, it seems that no gyn feels comfortable when I talk about it - so I don't! By the way, I did not have HPV. As you know, these lesions grow very slowly so that the person has time to discover it herself (that's the way I feel).
I wish you the best of luck with your new doctor. I feel that he wouldn't have accepted you as a patient if he didn't feel that he could take good care of you! :) Mabent

Oleander53
02-11-2009, 08:45 PM
Mabent,

You are the first person I have found that had Bowen's in the genital area and was HPV negative like myself. I appreciate you sharing with me. My Dermatologist said the non HPV Bowen's moves differently and can be from enviormental causes.. I will let you know if I learn anymore. Thank you for coming forward... thank you so much.... Oleander

mabent
02-12-2009, 12:04 PM
You are welcome! As I said before, I know how it feels to have something that some doctors stare in awe about and really have no idea how to treat but still try! It eases your mind to know that you are dealing with a doctor who doesn't leave further followup treatment up to you!!!!!:confused::dizzy:
I'll be watching for your post with news about your March appointment.
You've made good decisions! Mabent :angel: :)

Oleander53
02-13-2009, 11:24 AM
Thank you everyone for all the support. I will keep you updated. Oleander

teapotlady
02-15-2009, 01:56 PM
I am glad your going to get to see the new doctor. It seems to take forever to get in. My new doc will do surgery on me for sure on the 3/3 but if anyone cancels I am going to get their spot.

Oleander53
02-15-2009, 02:13 PM
Teapot lady.......what is going on with you? How are you feeling? So you have to wait until 3/3? I go on 3/4.......seems like forever. I have been thinking of you.. My Dad had a huge Squamous Cell Ca on the side of his face and it really hurt him quite a bit. Only time I heard him complain so I knew it really hurt him. It was on his cheek and sore to touch.

I feel okay......seem tired and still have swollen glands in groin :eek:. I itch a bit where they took the stitches out but I think that is normal. I got a mirror out and took a look. Healing up nice but do not like the discoloration which looks like the original spot? But my margins were not clear so that is probably expected.

I finally found a great support group online to help me with this type of cancer. Not sure I can mention the name here. I will check with Moderators first. I have recieved some great information.

I have a salesmeeting I have to attend next week so I guess it is good my appt is after that. I have been so worried about work "cutting back" . So I want to do everything I need to do to keep my job and insurance.

It is a shame that has to be such a worry for me but it is reality. The big question is do you tell your work or not? Does having an illness protect you or put you on the chopping block? I do have an Aflac cancer policy.

I live alone and have children in college that rely on me for financial support. Their father is passed away and my parents are passed away so who can I turn too? I am it. I have to co sign all of their school loans until they turn 24 and can be considered independant. They both work and help out. Hoping to see the college financial rules change. They are very unfair. I try not to worry but I do......

So much to think about..... I am hoping you are feeling okay. Let me know okay? Keeping you in my prayers.

Oleander

Oleander53
03-04-2009, 09:57 AM
Wish me luck today.......I see the Oncologist Gyne this afternoon. I am trying to stay calm and clear.... I will let you know what he tells me. I have a list of questions written down.

Oleander

teapotlady
03-04-2009, 01:50 PM
Good luck with your appointment. I hope it goes well. I got my stitches out today. You can not believe how tiny the stitches were, she did a wonderful job and I bet by this time next year I will have a hard time even finding the scar. That was the good thing about seeing a plastic surgeon. I hope your doctor leaves you feeling confident.

Oleander53
03-05-2009, 03:39 AM
Thank you and I am happy you are feeling good. Sounds like you had a Good Doctor who knows how to stitch people up correctly. Wonderful.......

The very BEST to you, Oleander





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