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Addressing Long-Term Side Effects After Treatment for Anal Cancer - Support Meeting

edn
Posts: 2
Joined: Oct 2013

Hi everyone,

I work for the HPV and Anal Cancer Foundation (www.analcancerfoundation.org). On October 9th we have got an incredibly exciting event happeneing in New York City. 

For the first time, a forum exclusively dedicated to anal cancer survivors will bring together a panel of experts to discuss long-term side effects and quality-of-life concerns after treatment. The Foundation is co-sponsoring this educational support meeting with Memorial Sloan-Kettering Cancer Center (MSKCC).

The panel will focus on sexual function and management of side effects resulting from radiation therapy.  We invite all anal cancer survivors and their families to this event.  For a copy of the flyer, click Anal Cancer Survivors Forum.  Please share information about this event with your family and friends.

Addressing Long-Term Side Effects After Treatment for Anal Cancer
Support Meeting for Anal Cancer Survivors

Wednesday, October 9, 2013
5:30 – 7:00 PM*

417 East 68th Street, Room ZRC-136
(between 1st & York Avenues), New York City

Leading the event will be Dr. Karyn A. Goodman, Associate Attending in the Radiation Oncology Department, and Dr. Jeanne Carter, Head of Female Sexual Medicine and Women’s Health programs, at MSKCC.  The HPV and Anal Cancer Foundation’s Executive Director, Justine Almada, as well as three patients will also speak at the event.

There will be an opportunity for questions following the panel discussion.  The event is open to all anal cancer patients and survivors.

MSKCC has requested that all guests register beforehand.  Please RSVP to 646-888-4740 or e-mail RLAC@mskcc.org.

We hope to see some of you there and if you have any questions in the mean time, please feel free to email us on info@analcancerfoundation.org

Marynb
Posts: 1134
Joined: Aug 2012

It is great to see the Anal Cancer Foundation heading this up! Will there be a recording of this session so those of us who do not live in the area can watch it?

Also, I am wondering whether there has been an effort by the Foundation to raise awareness in the public and among doctors? Most of those who post here were misdiagnosed, sometimes for years! Doctors and the public need to know the symptoms of anal cancer. Lives could be saved.

The other issue that needs to be addressed is the misperception that anal cancer is the result of gay sex or anal sex. The public needs to be made aware of HPV and the link with anal cancer. Often, it is this misperception that keeps anal cancer patients from speaking openly about the disease, so we stay in the closet, so to speak. Many of us have been in long term marriages and had no high risk behaviors.

I wonder if you could educate us about the efforts of the Foundation and how we can help to raise awareness to prevent this dreadful cancer?

Thank you for all you are doing.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I second what Marynb has said.  It would be great if these types of seminars could be held regionally at some point, as those of us on this board are scattered across the country and are unable to be in NYC. 

Thank you to everyone, including yourself, who is involved with the Foundation.

Clovergirl
Posts: 46
Joined: Dec 2012

I would sign up for this in a hot minute if I could.  I'm having a scan that day or I would be hopping a plane for sure.  It would be great if there could be more of these in other areas throughout the country like MP said.  We could all use some solid facts and information.  Please consider having more of these seminars.  For those of you attending, can't wait to hear what you have to say.

qv62
Posts: 235
Joined: Nov 2012

Thank you for the oppurtunity to attend the seminar, I am so looking foward to it, I registered when I first saw it on the MSKCC site and posted the link here back in mid Sept for others to hopefully join us, so far there are 3 of us here on the boarn now attending, maybe four if all goes well. Do you know approx how many people in general are now registerred ? I saw there was a location change since I first signed up, was wondering if it was moved in regards to needing a bigger space ? I hope it is well attended

qv62
Posts: 235
Joined: Nov 2012

Hoffman Auditorium

1275 York Ave (bet. 67th & 68th Street)

Room C-186

 

Please call 646-888-4740 or email RLAC@mskcc.org to register

edn
Posts: 2
Joined: Oct 2013

The hospital does not allow the sessions to be recorded but representatives from the charity will be taking notes which will be posted on our website after the event. (www.analcancerfoundation.org) We are also hoping to live tweet from the event so that those that can’t make it can ask questions and join the discussion. In the future, we hope to roll out these sessions so that they are accessible to more people both in the UK and the US whether this is through webinars or more meetings.

Our latest campaign NOMAN is an Island: Race to End HPV (www.nomanisanisland.co.uk) was designed to raise awareness of the prevalence of HPV and its link to many cancers. The campaign gained national and international press including Bloomberg and the Chicago Tribune so we are making in headway in getting people talking about this often stigmatised disease.  In terms of awareness amongst doctors and the medical community, our charity seeded and helped create the International Anal Neoplasia Society (IANS). IANS is devoted to prevention and treatment of AIN and anal cancer and one of the goals is to educate clinicians. Our hope is that they will be able to generate a clinical consensus about who is at risk for anal cancer and how we can use more preventative strategies to prevent anal cancer cancer from developing in the first place. IANS is having it's inaugural meeting on November 22  in San Fransisco. We have a strong portfolio of projects we're announcing in the next few weeks. Some are preventative, others are more related to developing therapeutic tools, some are designed to end the isolation many anal cancer patients feel. Stay tuned!

Back to the event, we now have over 40 people registered which is incredible. We've had to upgrade to a bigger room! 

Marynb
Posts: 1134
Joined: Aug 2012

Thank you for all the information. As far as risk factors, many on this board had no apparent risk factors and were misdiagnosed for years.

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

I hope you will continue to come back to this board with updates on the projects that are in the works.  Thank you!

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

thanks for doing this.... and please do understand( and you probably do) that who is at risk is almost every and anyone...  many of us here did not have multiple partners or engage in anal intercourse....( i am not saying that it is bad to do either one of those, just making a statement ).... thanks   again and keep us informed......sephie

LaCh
Posts: 509
Joined: Dec 2012

People like to identify risk factors because it gives a feeling of control. "If I eliminate this thing, then that thing won't happen, if this risk factor goes, then the risk of cancer goes (or goes down) with it." Living with uncertainty can be uncomfortable, but unfortunately, that's often the condition under which we live, whether its recognized or not. Insofar as known risk factors for this tumor are concerned, I had none of them. Not one. Don't drink or smoke, don't eat meat or processed food, am not overweight. Have never tested positive for HPV, not now, not ever. Sometimes, answers aren't known and never will be. Sometimes, all one can do is deal with the problem without knowing the "whys" of it.

 

 

Marynb
Posts: 1134
Joined: Aug 2012

Well stated, LaCh. It is not enough to educate doctors and the public about risk factors, because it leads to misdiagnosis. It is important that doctors and the public know the symptoms of anal cancer. I complained for years about what my doctor told me was a mere hemmorhoid. I was referred to a gastrointestinal specialist and he asked me my symptoms and never even examined me! I finally got myself to the right doctor after years of doctors telling me it was nothing to worry about! There is no excuse for this. Anal cancer should not be hard to diagnose! It is usually pretty easily visible, if a doctor knows what to look for. I did not know the symptoms and so I had no reason to suspect cancer at all. I was stunned, to say the least! I do not fit into any of the risk categories and I never thought of HPV after I learned that my husband of 20 years had been having sex outside the marriage. I did have test for HIV, but no doctor suggested I be tested for HPV.

I think every roll of toilet paper and every package of Preparation H should describe anal cancer symptoms so the public can be aware of what to look for. That would be an inexpensive way to save lives! I would love to see the Anal Cancer Foundation launch a public awareness campaign so that the general public would know that anyone can get this cancer. There is widespread misinformation about this cancer. That has to be corrected so lives can be saved!!!

mp327's picture
mp327
Posts: 2820
Joined: Jan 2010

What you have said is so true.  There is SO much misinformation about anal cancer.  I can understand the public's lack of knowledge, given that this cancer is rarely talked about.  What I don't understand is the number of doctors who dismiss symptoms and automatically give the old "it's only a hemorrhoid" diagnosis.  That's what my internist did.  Had I not been overdue for my first screening colonoscopy, for which she referred me to a colorectal doctor, I would have gone for who knows how long believing that my bleeding was just a hemorrhoid.  One look up my bum by the colorectal surgeon during my consultation appt. prior to scheduling the colonoscopy was all it took for her to tell me I had cancer.  It makes a huge difference as to what type of doctor and that doctor's experience with anal cancer when it comes to getting a correct diagnosis.  I always tell people on the websites on which I'm active that a diagnosis of hemorrhoids for bleeding symptoms with a simple DRE should ALWAYS be followed up by a colorectal specialist for a more thorough exam, including anoscopy, for confirmation of that diagnosis.  Many times, as in your case and mine, the first diagnosis is wrong.

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

yes, well said  Lach, marynb, martha::::;   I went to a proctologist for my symptoms and he kept saying for 10  months,  i see bleeding but it is not cancer like farrah fawcetts.... i had a visible sore on the outside.... he also did muptiple DRE;s and anoscopes and STILL did NOT recognize what it was or send me to a colorectal surgeon... finally ,  i was in soooooo much pain that my hubby insisted i go to a larger town for 2nd opinion.... the colorectal surgeon took one look and new what it was,,,, thanks to him ,, it was caught at stage 2.......misdiagnosis by the one doc  who goes to school to study the anus and rectum..... what a mess...... no HPV either...... sephie

Marynb
Posts: 1134
Joined: Aug 2012

I have not initiated lawsuits because I have been too sick and just trying to survive. I am an attorney and when I hear story after story about failure to diagnose this disease, I cannot help but to think that what is needed to wake up the medical community is a really good lawsuit! My story and Sephie's story, and many others, is blatant medical negligence. I wonder how many people have died because doctors dismiss the symptoms? One is too many!

That is why I hope that the Anal Cancer Foundation can do something to educate the public. I have never once seen any public awareness campaign.

Maybe we should think of doing something to raise awareness?

pializ
Posts: 255
Joined: Nov 2012

I was misdiagnosed for a couple of years at least. On reflection, not even a proper examination, but again considered to be a haemorrhoid. By the time I was diagnosed by a colorectal surgeon,  a lymph node was involved. No evidence of hpv either, & none of the other risk factors except my age (I was 59 when diagnosed). On initial examination, he though it was rectal, but confirmed to be anal scc when examined under anaesthetic plus biopsy.

I live in the UK, & when an urgent suspected cancer referral is made, the patient should be seen within 2 weeks. However, when I hadn't heard anything after 2 weeks, I checked only to discover the referral had been downgraded to 'urgent' with a 26 week wait. No, you didn't misread that, a 26 week wait for urgent. I saw surgeon privately. Thank goodness I was able to!

LaCh
Posts: 509
Joined: Dec 2012

I need to clarify: I was never misdiagnosed. I had internal hemmoriods that were ablated by my gastroenterologist, they returned, she ablated them again, and the bleeding returned six months after the second ablation. I let it go another few months due to new rules that required someone to accompaiy me home after the anesthetic proceedure; since there was no one, I was the one who figured, "This can wait." When the rule was lifted (when my gastroenterologist insisted that it be lifted) I went back for what we both thought was a third ablation of internal hemmoroids; as soon as I was anesthetized, she looked, knew it was cancer, did a biopsy to confirm and the rest is history.  But at no time was I blown off or misdiagnosed.

Marynb
Posts: 1134
Joined: Aug 2012

LaCh,

Your history is confusing. Are you saying that the ablated hemmorhoids was an accurate diagnosis? Sure doesn't sound like it. Once I got to a colorectal surgeon, it did not require that I be put under anesthesia for him to strongly suspect anal cancer and do a biopsy. I am guessing that your ablations were a mistake and that your doctor should have known the symptoms of anal cancer and do a biopsy. Or are you saying that you really only had internal hemmorhoids that turned cancerous? That seems unlikely.

LaCh
Posts: 509
Joined: Dec 2012

Yes, I'm saying that the ablated hemorroids were an accurate diagnosis. No, I'm not saying that I had hemorroids that turned cancerous. Yes, I'm saying that I had hemorroids, then I subsequently had cancer. I'm saying that there's no correlaton between the two. You are, of course, free to guess whatever you want, but without evidence, a medical degree, a board certification in gastroenterology, the ability to visually distinguish a tumor from a hemorroid, experience or knowledge of the gross appearance either, I'd be careful with what conclusions I reached, and what allegations I made, if I were you. Put another way, if it were a court of law and the question was, "Is there any medical reason that the same patient can't have both hemorroids and an anal tumor, with the second subsequent to the first?" and I had to ask a board certified gastroenterologist that had seen both, in many patients and both in the same patient, or someone without medical credentials who was going to make a guess, I'd ask the former. By the same token, I'd not want an unqualified "guess" made about my ability if I were that doctor. If you have concrete evidence and a reason to make such a claim, I'd be interested in hearing it. Maybe you know something that I don't. Maybe there's a physiological reason that precludes both hemorroids and an anal tumor in the same person and I'm just not aware of it. If not, I'd be careful with my words. Those are serious allegations, implying serious malpractice, based on......  what, exactly? 

Marynb
Posts: 1134
Joined: Aug 2012

Sorry, I seem to have offended you, though I had no intent to. You know your case, and it is possible that you had hemmorhoids before the tumor developed. In that case it was certainly a lucky coincidence for you that you had the hemmorhoid treatments, so they found the anal cancer at a very early stage. That was not the case for me, and for many others here.

In my case, and in many other cases here, the doctors mistakenly diagnosed the tumor as an internal hemmorhoid and treated us for hemmorhoids when we had a cancerous tumor. For me, that went on for years and I was at a later stage when I was finally correctly diagnosed.

I am glad that you had doctors that were on top of things!

LaCh
Posts: 509
Joined: Dec 2012

No, as I said, I had bleeding, it was evaluated, diagnosed as a hemorroid and treated (ablated) and the bleeding stopped. It started again several months later and was ablated again.  Each time the location of the 'roid was different, just as the site of the tumor was different from both hemorroid sites. The bleeding stopped and resumed six months after the second ablation and the third event of bleeding was the tumor. Each episode was independent of the others, was evaluated and treated independently of the others. To say that the hemorroids were misdiagnosed is not the case; they were diagnosed correctly and treated appropriately. Even a layman can see the difference between the two, so to say that a board certified gastroenterologist would mistake them upon visual exam stretches credibility. When an anal tumor is misdiagnosed as a hemorroid, it's generally because someone didn't look, didn't evaluate it, didn't do anything beyond take a history of rectal bleeding. In other words, it's often (not always, but often) not because something was done poorly, it's because nothing was done at all. That's not what happened to me. When I returned for what I assumed was another hemorroid ablation, the tumor was palpated under anesthesia (as I'm told) and then visualized with the scope, and it was immediately evident (to the gastroenterologist) that contrary to what we both assumed, this wasn't another hemorroid. A biopsy was performed and the diagnosis made.  What I had was a gastroenterologist who was willing to treat a third incidence of rectal bleeding, despite the potential of being lulled into a false sense of complacency based on a previous history of two hemorroids, was astute enough to recognize that the third time was something all together different from the first two, who had pulled strings to make it possible for me to even go there a third time (remember, there were rules at that time that demanded someone to accompany home anyone receiving anesthesia, and I had no one; without those rules being lifted by her, I'd either be dead by now or well on my way. ) So I've been crazy lucky in many ways, but as far as being misdiagnosed... no.  Not in this.  As a matter of fact, ironically, I have been misdiagnosed in my life, so I know the immeasurable frustration involved in that, but this wasn't one of those times. When I really needed someone to get it right, she did. Spot on.  Luck is hard to fathom, good luck and bad; I've been very lucky in many ways in my life, and not a day goes by that I don't know it. Don't know why.... just know that I am.  It was an adventure, a bump in the road, I saw it, passed it and now it's behind me, and in that, I'm lucky as well. Not everyone is able to say that, and I'm aware of that too.

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sephie
Posts: 514
Joined: Apr 2009

wow.... you found a very intelligent colorectal surgeon.... so , if you do not mind,  put her name of here for others......you might have already said he name  but i feel that it might help others to get to someone who is astute enough to know what this cancer is..... thx....sephie

LaCh
Posts: 509
Joined: Dec 2012

She's not a surgeon; I've not had surgery. She's a gastroenterologist who dx'd my internal 'roids, ablated them and then found, biposied and diagnosed the anal squamous c carcinoma; she's the best of the best of the best, but she isn't a surgeon. I have no recommendations for a colorectal surgeon; I decided early on that I'd not go that route (an ostomy) if it were ever recommended. Fortunately, it wasn't.

eihtak
Posts: 809
Joined: Oct 2011

Its often a matter of perspective. I was "lucky" enough to be raised by a family of people who also thought themselves to be mostly lucky in life........and so it continues. The reality is that I too AM really lucky in many many ways.

As far as being diagnosed correctly, I did have symptoms for a long time but never myself suspected anal cancer and was not at all in a high risk group. The day I went in I believed I would be told I needed a hysterectomy, possible some rectal prolapse treatment, and a small pelvic hernia (that was a lymph node). I saw a recommended gyn who after a brief examination stated he thought it may be an anal tumor and immediately got the ball rolling with more tests.......that day! I was lucky!! Only months after my accurate diagnosis, that doctor died of a heart attack while traveling in Ireland, kind of ironic in a discussion on luck.

Marynb
Posts: 1134
Joined: Aug 2012

Yes, luck certainly plays a role in life! Clearly, some here feel lucky to have had a doctor who correctly diagnosed the anal cancer right away. Sadly, it may be the exception, not the rule. This has to change.

My only point in this whole discussion is that anal cancer patients should not need to rely on being lucky enough to be going to a doctor who recognizes the symptoms right away so lives can be saved. Doctors and the public need to be educated about the symptoms of anal cancer so that treatment can be given in the earliest stage of the disease. I hope that someone can launch a public awareness campaign. That is the only way more lives can be saved!

LaCh
Posts: 509
Joined: Dec 2012

The name of my gastroenterologist is  Dr.Julie Foont, of Gotham Gastroenterology, 1317 Third Avenue, NY NY 10021. (212) 570 2075.

Compassionate. Smart. Thinks inside and outside the box. On top of her game. The absolute best.

She's a gastroenterologist, not a surgeon, but most people see a gastroenterologist before they see a surgeon.  If the gastroenterologist doesn't see a problem, the patient who requires it (and not all do) never makes it to part two: a surgeon.

 

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

lach, in my case ,  even tho we do have gastroenterologists here,  i went first to proctologist ( out of yellow pages ) thinking that he could help me.... i thought it was a hemmy....but i am not a doc so depended on him for help .....no help....then went to another town for colorectal surgeon just for second opinion... he told me he could help and put me in hospital and  tried to surgically remove the entire tissue that he thought was a tumor but stopped when he determinded that it would damage anal spincter .....i was cut and stitiched from the outside of my anus up into the inside......unbelievable pain for 12 weeks....when biopsy came back scc anal cancer,  i went to MD anderson.... at MDA ,  colorectal surgeon did initial proctoscope and while inside of me looking with the scope ( no anesthesia)  asked very loudly  "what did they do to you????? " all i could answer was,   i think they took biopsy.....he scared me and sort of let me know that he would have done it differently so we now call it the largest biopsy that he has seen... it left lots of scar tissue and inflammation.......  i wish i had known about this type of cancer to make better choices of docs...... i really admire your doc.... compassion and intelligence....wow......i am rambling now ...... sephie

LaCh
Posts: 509
Joined: Dec 2012

ramble away, feel free. it's a bad story for sure. doctors are no different from teachers, from bus drivers, from sanitation men, firemen, cops or zookeepers; some are good, some are bad and some are very good...or very bad. It sounds like you found one of those who...well, I dunno. I can only tell my story; I let other people tell theirs, and more importantly, I let them draw their own conclusions about their own stories. I had two oncologists from hell, really, the both of them, from hell (that's why I fired them both when treatments were finished) but then I had my gastroenterologist, who, really, once the diagnosis was made, had no role in the treatment. That said, she's an angel with whom I'm still in touch. Right now, my issues aren't with the disease; that's gone. My issues are with the cure, which has now become the disease.  I'll probably wonder for the rest of my life if I made the right decision in treating the cancer; eight months post treatment, I still don't know. I wish you luck, sephie, I sincerely do. It sounds like  you have a real "situation," to be sure.  I do wish you luck, better luck than you've had so far.

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

thx for your well wishes.... i totally agree.... my issues are also , now, with the cure which is now the disease----absolutely well said by you............ thx so much for your input..... good luck to you also and to your dog.........hope you decide to go to that forum.... you can stay anonymous.....just listen and give us back what you feel is good info.....sephie

LaCh
Posts: 509
Joined: Dec 2012

You know, I realized for the first time tonight that I'm not the person to ask about stuff.... I put my name on a list for one-on-one peer support (as a mentor to help someone else, since I've already finished tx) but I realized during the talk that I'm definitely not the person to do it. I guess I'm just as strange as I always suspected I was. I'm different. Odd, different. I didn't freak out when I got the diagnosis, I wasn't afraid that I was going to die, I didn't get angry, I don't have ptsd, I don't live in fear that it'll come back, I didn't have people knocking on my door asking me what I needed, (" I never could have gotten through it without the love and support of my friends and family" is what you hear over and over, but I didn't have anyone knocking on my door), I don't have the need or desire to talk about the experience, I don't feel alone with this heavy burden of going through it... I  don't share any of the experiences that seemingly, the majority of other people have.  Maybe I'm missing a crucial ingredient of something-or-other, I dunno.  You've been very kind to me and I really appreciate it.  I do hope that your issues resolve, or that you find a way to resolve them, or, barring either of those two things, tthat hey at least become more bearable.  The one concrete take-away that I can give you came from a question that I asked after the talk broke up. It was about digestion, since I have almost no ability to digest food anymore, and the info that I got was that 5FU can, in fact, cause motility problems, which is what I have.  I want to say thanks again; your kindness to me is a real gift. 

sephie's picture
sephie
Posts: 514
Joined: Apr 2009

lach,  even tho it is the majority, not everyone has the love of friends and family to help them---- you just hear about those.... i guarantee that there are  some who travel this road by themselves.... they will need you to let them know that it is doable without others helping ( only if you want to).....i think that it is GREAT that you do not worry about it coming back.....i ,also,  did not freak out when i got the diagnosis ,  i was not afraid that i was going to die,  I did not get angry.... i really did not have but one person knocking on my door to help for whom, i am grateful....i was left alone at MD anderson monday - friday but  did have the hubby the other 2 days  ( he was there on some weekends which is not the tx days).....you are not missing any crucial ingredient..... you have gone thru it the right way for your life circumstances....you made it.... you did it.....i still think you will be valuable as one on one peer....i, actually, was disappointed by one friend who did not really help at all--- i expected too much....that if my mistake,   .i hope your digestion gets better......  and thanks again to you ,,, you are  a gift to me also,,,,,,, sephie

Lorikat's picture
Lorikat
Posts: 551
Joined: Jul 2011

Well said Sephie..  I did have my husband with me for the three months of txs..  And know how blessed I am...  However I go for check ups every three months by myself.  It gets way too expensive with two plane tickets, etc, etc.  and truth be known, all I want is to be is left alone, a pitcher of iced tea and my thoughts and a book.  Not worrying that someone is ok, or not bored... truly, a great deal of that summers memories have faded.  Thank you Lord!  

Lacha, different is not a bad thing.  Not being afraid to take care of yourself is awesome, and being able to share the fact that you can do that ON YOUR OWN is wonderful knowledge to share with others.  There are many, many people who, as they get older, need other people less..  I'm 62 now and enjoy my own company.  10 years ago I felt as though every day had to be filled with people and activities...  Now?  Not so much....  Still like my friends and family with which I am blessed (at least most of the time)..  Well in too many words I said "variety is a good thing"!

Marynb
Posts: 1134
Joined: Aug 2012

I live alone too! Many people go through cancer treatments alone. We are all different, really. Thank God for that! I am sure you could be a good match for someone going through cancer treatments alone in the city. That is really kind of you to do that!

pializ
Posts: 255
Joined: Nov 2012

Going through treatment with friends & family around is complex, or was for me. They wanted to be supportive, & were to an extent, but also my very close family had their own difficulties at the time. It meant that I had to be supportive for them too, & worrying about them was maybe not the best, but it was what it was, & I am thankful that they love me enough to want tobe there for me.

We are all different. Our journeys through life are all different, & we all have our own 'oddness'.

Doubting your appropriateness to be a support is understandable, only from the point of maybe, you not knowing what help another person wants or needs. As someone who appears to strongly need to protect their independence, you might very well be the most appropriate person to give that support to another likeminded individual. Someone who won't 'ooh & aah', but give factual advice. You have strengths that are to be admired. There is a reason we are not all the same!

Vive le difference

Liz

Phoebesnow
Posts: 447
Joined: Apr 2011

Thanks for the info on motility and 5 fu.  Now I know what's wrong.  Did they give you any info whether it could improve?

 

This was not the case for the first two years.  It will be 1 year 11/1 for the motility issues.   I mention that because maybe it will change for you in the future.  Everything is so unpredictable .

LaCh
Posts: 509
Joined: Dec 2012

Man, I wish there were something to offer. This wasn't even addressed during the talk, I asked it afterwards, and even after the group Q&A, in a face-to-face with the presenter. She said that there are drugs that can increase motility, one of which was Reglan, I believe, whose side effects include tardive dyskinesia. Great, I thought, yet another brilliant solution that solves one problem and gives me a new one.  I also have cognitive issues...the list goes on. My cure has now become my disease.

LaCh
Posts: 509
Joined: Dec 2012

Going through treatment with friends & family around is complex, or was for me.

<<<<<<<<<< there's no doubt about that. I was glad to be alone.  Very soon after the treatments started, I started having pain going to the bathroom and that quickly escalated to the point of having to cover my mouth with a towel so the neighbors wouldn't hear me scream. (I had a tear inside). I SURE didn't want anyone in the house with me.

They wanted to be supportive, & were to an extent, but also my very close family had their own difficulties at the time. It meant that I had to be supportive for them too, & worrying about them was maybe not the best, but it was what it was, & I am thankful that they love me enough to want tobe there for me.

>>>>>>>>>> Well, yes, it's nice to know that people care and for many, the way to "care" is to "do".  I remember feeling lucky that I was alone, although it did present some challenges, especially towards the end.

We are all different. Our journeys through life are all different, & we all have our own 'oddness'.

>>>>>>> ja ja ja well, I suppose. But there's odd and then there's ODD. I think I probably fall into the latter category.

Doubting your appropriateness to be a support is understandable, only from the point of maybe, you not knowing what help another person wants or needs. As someone who appears to strongly need to protect their independence, you might very well be the most appropriate person to give that support to another likeminded individual. Someone who won't 'ooh & aah', but give factual advice. You have strengths that are to be admired. There is a reason we are not all the same.

<<<<<<<<<<That's very kind... really, very kind.  I suppose... I dunno. I think that the majority want ... well, I dunno what the majority wants...  I just have a feeling that the way that i did it... 5th floor walk-up, alone, with a dog to walk... required the suck-it-up method, and that's in general, how I operate.  That's not very helpful to other people. I'd have to be very very sure that I wouldn't do more harm than good to someone going through this experience. Even if it's saying, "Hey, as bad as this is, it could be worse..." or something like that, well, that's not real helpful. And while I could certainly restrain myself from saying something like that, I'm not the ooo and ahh type or person. I can certainly emphathize, and do, but in my own way, in my own style. I'm practical. Not without empathy. Just practical. Sometimes people don't want practical. I dunno. There's nothing to decide today.

LaCh
Posts: 509
Joined: Dec 2012

It's more than just living alone. I have an outlook so vastly different from others' that I'd be more detrimental than helpful.  During the talk, things like anger, ptsd, fear of recurrence, fear of death, anxiety, all manner of things that I didn't feel were mentioned. I'd do more harm than good for another person going through the dx and tx.  I'd already put my name on the list, but when they call, if they call, I'll tell them that I don't feel that I'd be well-suited for something like that.  To be honest, I went to the talk as a way to get information for the problems that I'm having, but have no desire or need to talk about my cancer experience or hang out with people who've been through this cancer with this treatment any more than I want to talk about the two years that followed my bout with pertissis (whopping cough) or my emergency appendectomy.  I just don't have the interest or the need. I don't know how to put it without seeming unappreciative but... it's like,  here are these kind people (the doctors and support staff at the presentation) who were extending a hand of loving support for issues that I don't have. For those who feel alone, for those who want to talk about it or need to talk about it, I think those acts of selfless generosity are like gold... I just don't have the need.  For me (except for the problems from the cure) it's over.  I don't dwell on it, and the truth is, I hardly even remember it. 

7243
Posts: 211
Joined: Feb 2011

i just want to take a step back to. "At risk or risk factors " for anal cancer.  Any sexually active person  is at risk for anal cancer.  Every woman who is sexually active is recommended to have and receive a  cervical PAP ... Usually a dual test to also screen for high risk HPV strains.  I am a proponent of anal PAP screening for all sexually active men and women.    Early identification is key, when there is dysplasia or atypical cells which can be a treated and destroyed.  Rectal Bleeding ... Bright red blood, is actually a later symptom of cancer and could be related to so many different causes clouding early diagnosis: hemorrhoids, fissure, solitary ulcer, etc.    Unfortunately, insurance companies may not pay for  an additional preventive study.  Sadly.    

And I demanded the tumor be tested for HPV ... Even tho I NEVER tested positive for HPV in  the 25 years I had PAPs with the HPV dual test (When that came available). The tumor was strongly positive for HPV 16 .... and I'd been monogamous and my hubby too for over 20 years.   So ... "Never " positive for HPV may not mean anything ... Request the tumor be tested ....   Insurance paid and it may be good for you if you have a need to know.  And it was important for me to know.    And ... ongoing recent cervical PAP tests are still negative.  Okay ... Long story short ... I support anal pap for all sexually active people.  And, anal sex is not a necessary  part of sexual life to  inoculate the anus with HPV ... It migrates in secretions and menstruation, toys and hands.  Things to think about ....  Remember , most squamous cell cervical cancer is related to HPV .... 

I also support the HPV vaccine .  I also want to say this is my opinion after reading and researching anal cancer , oral cancer and cervical cancer.  That being said, your cancer care team is your best resource re;  questions about anal cancer.

Marynb
Posts: 1134
Joined: Aug 2012

Hi 7243. Thanks for this. I have been wondering whether a person who had HPV related anal cancer is also at risk for HPV related cancers in other parts of the body, like throat, uterine, etc.? As far as I know, I am not being monitored for HPV at this time.

7243
Posts: 211
Joined: Feb 2011

Hi marynb!

after treatment we're followed closely re; for recurrence of cancer.  Anal PAP not something they do ... However, if u still have your uterus you should have PAPs.  Generally they do a combined pap and hi risk HPV as part if that test.  Perhaps ask your Gyn practitioner about this.  There are differing opinions re; anal cancer.   Keep in mind it is a "rare" cancer, low volume and not a lot if money goes toward it for research ... Unlike other cancers.   But there is good info on the UCSF site and this physician has done much work with dysplasia and HPV ... 

read more about the work if dr Joel palefsky at UCSF.

http://www.ucsfhealth.org/joel.palefsky

as always, each of our medical circumstances are unique ... Good to hear from you!

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