Please, please give any perspective you can - very confused / overwhelmed

SteveS212

Hi! - I am sorry to post again a similar post, and will try to keep this as short as possible, but I am desperate for SOME kind of actual point of reference. I am totally confused.

A few weeks ago I was diagnosed HIV positive, along with HPV and anal warts - two very small ones. The "good" news is that my good cells were amazingly high and my viral load was amazingly low. They said I had one of the strongest natural immune systems they had ever encountered. Anyway, they did an anal pap smear but said it will take TWO MONTHS to get the results. They also started me on Aldera cream for the anal warts. I immediately started looking at sites like this one and honestly got MUCH MORE freaked out about the anal cancer possibilities than the HIV. It is kind of amazing that HIV is really now a very treatable long term reality. I have had no side effects at all from the meds (one a day) and they are saying positive people can expect essentially a normal life span if they care for themselves, and in some cases, are actually more healthy because they pay such close attention to their health issues on an ongoing basis.

Anyway - the thing that was / is freaking me out is the possibility of the anal cancer, because i have every symptom they say - soft thin stool, bleeding (very, very light), itching, and a general sense of pressure. And they said the insurance (which is good insurance) would not cover an anoscopy until there was a positive pap smear and that will take, again, two months for results to return. Unbelievable!

So - I called them today and kind of unloaded on them. The nurse practitioner got on the phone and honestly was very kind and patient. ACCORDING TO HER, the Aldera cream is very "tough" on the anal area, and can very often cause the exact symptoms I was describing, and, she says, that even if the pap comes back indicating "dysplasia", she said it literally takes a matter of years - her words - at least 3 or 4 - for it to transform to any kind of cancer. So - all of that to say, she was saying the probably everything was fine, and that even if it is, it will still be "super early detection" in two months, since I could only have been exposed to this recently since the HIV/HPV/warts are all the result of a very recent infection.

FINALLY - and thank you for anyone who is still reading this - I am trying to balance her "Calm down, this is not anal cancer, and even if it is pre-pre anal cancer, we will see it in two months and it will be an "easy" treatment" against (no offense) everyone on sites like this one who are saying "They said I had hemerrhoids and they don't know what they are talking about and you have to be seen and treated NOW!"

I realize all of this is subjective - but this is SO new and SO overwhelming that ANY perspective at all will be greatly, greatly appreciated. Thank you greatly.

eihtak

Steve....

Hi, it is almost impossible to "calm" down once anxiety has taken hold and I just hate being told to. So sorry for the spot your in! I did not have an anal pap myself but that sounds unusually long for results. If it is any comfort my anal cancer was probably growing for a year before I went in and was diagnosed. The symptoms began mildly and over the year increased but "life" was happening and I believed they were related to something else. That was 2yrs ago, stage3b, and today doing great!! I'm telling you this because yes, early treatment is best, but those who were misdiagnosed, or just waited as myself, were still treated much the same with positive outcomes just as those who were fortunate enough to get early treatment.

I don't see how the Aldera cream would cause thin stool or pressure.....but I'm no doc!!

I'm glad to hear you are responding well to your HIV treatment, thats great! I think that being aware of health issues, eating healthy, exercise, and that ongoing attention to overall health is huge in living a long happy life. People use the term "new normal" after treatment for many things, and I have said I think my new normal is maybe better than my old normal was. I live with a few side effects from treatment, but all is manageable for me and as of today I feel healthier than I have in a long time and plan to live a long happy life!

I won't tell you to stay calm.....I find it helpful to stay busy when waiting for results, but also I would question waiting so long. Do you know the cost of an anoscope out of pocket? Is that even an option for you?

I don't know if I've been any help but you will be in my thoughts and prayers to get some answers soon and continue forward in health. 

 

SteveS212

eihtak said:

Steve....

Hi, it is almost impossible to "calm" down once anxiety has taken hold and I just hate being told to. So sorry for the spot your in! I did not have an anal pap myself but that sounds unusually long for results. If it is any comfort my anal cancer was probably growing for a year before I went in and was diagnosed. The symptoms began mildly and over the year increased but "life" was happening and I believed they were related to something else. That was 2yrs ago, stage3b, and today doing great!! I'm telling you this because yes, early treatment is best, but those who were misdiagnosed, or just waited as myself, were still treated much the same with positive outcomes just as those who were fortunate enough to get early treatment.

I don't see how the Aldera cream would cause thin stool or pressure.....but I'm no doc!!

I'm glad to hear you are responding well to your HIV treatment, thats great! I think that being aware of health issues, eating healthy, exercise, and that ongoing attention to overall health is huge in living a long happy life. People use the term "new normal" after treatment for many things, and I have said I think my new normal is maybe better than my old normal was. I live with a few side effects from treatment, but all is manageable for me and as of today I feel healthier than I have in a long time and plan to live a long happy life!

I won't tell you to stay calm.....I find it helpful to stay busy when waiting for results, but also I would question waiting so long. Do you know the cost of an anoscope out of pocket? Is that even an option for you?

I don't know if I've been any help but you will be in my thoughts and prayers to get some answers soon and continue forward in health. 

 

Thank you!

Thank you SO much for your kindness in responding. Yes, I realize there is a certain genuine level of an anxiety attack I am having. But - just talking it out (or typing it out!) helps so much. Thank you for your response.

 

To be fair - a few things - they said it could take "up to" 2 months...hopefully less. Something about them now needing to send it out to a new lab or something. Still SO strange to me. And, she said that Aldera really takes a toll on the anus, and if you have a propensity for and history of hemorroids, which I do, it can easily inflame / cause a flare up. She was very genuine with me and not condescending at all. She actually said she would try to schedule me in even without the pap results as soon as they can, but right now the earliest appointment they have is a month away.

 

So - exactly like you suggest - i am checking into just paying for it and getting it done for peace of mind. I have heard it is about $1000, which, thank God, I could manage. Once I have a "baseline" to know that I am OK, it will be easy for me to get an anal pap smear twice a year and keep current with it. So - those are my thoughts so far. Again - you are very kind to respond. I do not have anyone at all to talk about this all to - no one. So, these forums are very helpful.

lizdeli

SteveS212 said:

Thank you!

Thank you SO much for your kindness in responding. Yes, I realize there is a certain genuine level of an anxiety attack I am having. But - just talking it out (or typing it out!) helps so much. Thank you for your response.

 

To be fair - a few things - they said it could take "up to" 2 months...hopefully less. Something about them now needing to send it out to a new lab or something. Still SO strange to me. And, she said that Aldera really takes a toll on the anus, and if you have a propensity for and history of hemorroids, which I do, it can easily inflame / cause a flare up. She was very genuine with me and not condescending at all. She actually said she would try to schedule me in even without the pap results as soon as they can, but right now the earliest appointment they have is a month away.

 

So - exactly like you suggest - i am checking into just paying for it and getting it done for peace of mind. I have heard it is about $1000, which, thank God, I could manage. Once I have a "baseline" to know that I am OK, it will be easy for me to get an anal pap smear twice a year and keep current with it. So - those are my thoughts so far. Again - you are very kind to respond. I do not have anyone at all to talk about this all to - no one. So, these forums are very helpful.

Tests

Steve

I'm sorry you are going through all of this.  My wish is that it turns out not to be anal cancer.  However, for peace of mind I would pursue the test. I never had an anal smear test.  I had a colonoscopy which confirmed the tumor and a biopsy was taken during that test.  From there, well it was a PET, CT, proctoscopy, ultra sounds, some other test I can't spell and then another biopsy.  The majority of those were done by the second doctors I went to (MD Anderson).  I can't believe that the insurance won't pay for the test!  Have you appealed the decision?

If you can afford to pay for the test it will be worth putting your mind at rest.  Also, sometimes when you pay out of pocket you can negotiate the cost of the test and it may be less than if the insurance company were paying.  Health care in America....a total mess.

I wish you the best and I pray that the news is good. Wishing you continued strength and healing.

Liz

 

Phoebesnow

lizdeli said:

Tests

Steve

I'm sorry you are going through all of this.  My wish is that it turns out not to be anal cancer.  However, for peace of mind I would pursue the test. I never had an anal smear test.  I had a colonoscopy which confirmed the tumor and a biopsy was taken during that test.  From there, well it was a PET, CT, proctoscopy, ultra sounds, some other test I can't spell and then another biopsy.  The majority of those were done by the second doctors I went to (MD Anderson).  I can't believe that the insurance won't pay for the test!  Have you appealed the decision?

If you can afford to pay for the test it will be worth putting your mind at rest.  Also, sometimes when you pay out of pocket you can negotiate the cost of the test and it may be less than if the insurance company were paying.  Health care in America....a total mess.

I wish you the best and I pray that the news is good. Wishing you continued strength and healing.

Liz

 

Tests

Hi Steve,

 

I would ask for a doctor.  NPs are for colds anD  flu.  Have you had a DRE?  If you are 50 or close you are due a colonoscopy by law.  

 

Good luck!

mp327

Steve

I agree that 2 months seems like a very long wait to get results of the anal pap.  But unless things have changed, it has been my understanding that there are only a handful of labs in the U.S. that analyze anal smears.  Perhaps this is the reason for the delay, but I don't know for sure.  As for the anoscope, I find it hard to believe that the cost would be $1,000 unless this is high-resolution anoscopy, which I've never had and don't know the cost.  I have been getting regular anoscopes in my colorectal doctor's office for 5 years now and my total charge for my office visit is never more than $350, including the scope.  As Liz has suggested, perhaps if you discuss with the office ahead of time your lack of ins. coverage for such an exam, they will work with you by either reducing the charge to what ins co's normally pay or letting you pay the charge in monthly payments until the balance is paid.  I have worked in a physician's office, rehab clinics and two hospitals and both of these area common practice.  However, it's always up to the patient to ask. 

Now, about the anal warts.  I may be the only person on this site who has had surgery for anal warts post-treatment, but I can't say for sure.  This was my experience--my colorectal doctor found I had three very small internal warts, each about the size of a pinhead, during anoscope exam 2 years post-treatment for the cancer.  She told me that they must be removed, that they were not cancerous, but if left untreated or not removed, they could progress to cancer.  So I underwent outpatient surgery for removal and (knock on wood) they have not returned since the surgery in September 2010.  I asked her about treating them with Aldera or Imiquimod--she said they needed to be removed.  Luckily, they were biopsied and found to be benign. 

Having warts is different from having dysplasia, which means there are abnormal cells that have not progressed to become cancer.  Warts can be benign, as there are many different strains of HPV, some of which cause benign warts.  However, the only way to know for sure is to do a biopsy.  The anal pap smear should be able to identify dysplasia or a progression to possible cancer, at which time you would definitely want to undergo removal with biopsy.  I would encourage you to visit this website, which has lots of good information about dysplasia and anal cancer.   http://id.medicine.ucsf.edu/analcancerinfo/  I apologize if I've already posted this link previously for you.  It's a good source of information though and worth your time to check out. 

As for the anxiety, it's certainly understandable.  I remember how overwhelmed I was when my colorectal doctor told me she was 99% sure I had anal cancer after my very first anoscopy.  I had gone to her office thinking I had hemorrhoids.  Then there was lots of waiting for biopsy results, appts. with both the medical oncologist and radiation oncologist.  I didn't begin my treatment until 6 weeks after my first visit to the colorectal doctor.  That doesn't seem like a long time, but when you find out you have cancer, you just want to go after it and not have to wait.  So, I understand your anxiety.  Have you pursued a second opinion from any other doctor in your area?  That might be worth it, especially if you can get in with someone who specializes in treating anal cancer or other types of anal issues.  Again, I mention Dr. Stephen Goldstone.

Please keep us posted on what unfolds next.  I hope you can get the results of the pap sooner and find out what the next step should be.   

mxperry220

Colorectal Surgeon

Are you seeing a colorectal surgeon?  If not I STRONGLY suggest you see one.  They are the doctors that are trained in anal cancer.  When I had similar symptoms to you I had PET scan, MRI, and CT scans  as well as a colonoscopy with biopsy to identify my anal cancer.  If you are not satisfied with the respone from your current medical team I would suggest getting a second opinion.  The sooner treatment can begin with the type of cancer the better.  The cells with this type of cancer can multiple very quickly.  I was diagnosed in November in 2008 Stage 2 and so far am cancer free.  Should you have anal cancer as my chemo doctor said if I had to have cancer this is the type to have as it reacts to treatment more favorably as compared to other cancer types.

 

Hope this helps.

Mike

jcruz

waiting and anxiety

Waiting is so hard!  After my primary dr said she felt a mass and referred me to the gastroenterology office I had to wait 5 weeks for one of those drs to have an available appt.  I think I spent that whole time freaking out over the word "mass".  I was fortunate when I got in to see the gastro dr. that she had a cancellation and was able to schedule a sigmoidoscopy the next day, otherwise I would have waited another 5 weeks for that procedure.  Because of other complications after I got my diagnosis I saw more doctors and waited 6 weeks or so before my treatment began.  Like Martha, I was ready to start treatment as soon as I heard the word cancer.  The waiting was unbearable.  I don't know how long the tumor had been growing before I really noticed anything wrong.  I'd had a colonoscopy 2 years earlier with nothing other than a benign polyp to report.  And I really didn't notice any symptoms until about a month before I went to see my dr.  Looking back I realize that symptoms were showing but I had no idea that it might be anything but a hemorrhoid.  The doctors do say this is a slow growing cancer so yeah, I could have had that monster growing inside of me for many many months. 

I'm so sorry that you are having to wait and worry.  I really hope that the pap smear results come back sooner and that you don't have to wait for a scope for much longer.