Question . . .
Comments
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Hi Angela--
I have often asked this question and have yet to get an answer. However, I've been on forums with many people who have this cancer and am beginning to believe that there may be more agressive strains/cells in some of their cases. Why some people's cancer seems to be much more aggressive, I don't know. In my case, I believe my cancer was a slow grower, as I experienced symptoms for quite some time before being diagnosed. I was in denial about it being anything serious and kept putting off having it checked out. When I was finally diagnosed, I was right at the line between stage 1 and 2 with no evidence of spread to lymph nodes or distant mets. Now I realize that had it been more aggressive, I would have been dealing with much more. This doesn't answer your question, sorry, but just my opinion based on my case and hearing of others'.0 -
Growth
Angela ... nice new photo by the way!
From what my oncologists and colo rectal surgeon share with me and from what I've read ... years! It can take 10 years or more for an abnormal pap to go from normal to cancer. And the cell type is generally the same, squamous cell carcinoma, so the time frame is similar for anal cancer I would imagine. This is what I've been told.
What's on your mind that your asking this? or just curious?0 -
Grade of Tumor
In line with Martha ... tumors are graded I, II, III from low grade well differentiated to high grade poorly differentiated ... the higher grade the more aggressive as I understand; replicates faster, perhaps more likely to metastasize ... perhaps. As I understand, Poorly differentiated cell types are less predictable,more aggressive and a bit more chaotic. You could google anal cancer "Tumor Grade" for more discussion. Grade does not determine stage ... as I've read higher grade tumors types tend to have a poorer prognosis, however my oncologists did not go into much about the grade of the tumor I had, which was 1.4 cm in size and grade II - III with no nodal involvement; Early Stage I.
Hope that helps in some way.0 -
Angela7243 said:Grade of Tumor
In line with Martha ... tumors are graded I, II, III from low grade well differentiated to high grade poorly differentiated ... the higher grade the more aggressive as I understand; replicates faster, perhaps more likely to metastasize ... perhaps. As I understand, Poorly differentiated cell types are less predictable,more aggressive and a bit more chaotic. You could google anal cancer "Tumor Grade" for more discussion. Grade does not determine stage ... as I've read higher grade tumors types tend to have a poorer prognosis, however my oncologists did not go into much about the grade of the tumor I had, which was 1.4 cm in size and grade II - III with no nodal involvement; Early Stage I.
Hope that helps in some way.
My anal cancer was there for a good 6 months before I went to get checked out, me thinking it was a hemi. I agree that the grade of the tumor is a determining factor, my tumor was medium, in between the well and poor. I know I wish I had went by what my body was telling me and had gone to the dr sooner. Lori0 -
Hope this helps...
Angela...
I just asked my new drs this same thing. They said it grows very slow so although we've had some 'waiting' time (getting new biopsies 2 months after my old drs did them & now scheduling the treatment) there's no worry about it growing or spreading.0 -
I am just curious . . .7243 said:Growth
Angela ... nice new photo by the way!
From what my oncologists and colo rectal surgeon share with me and from what I've read ... years! It can take 10 years or more for an abnormal pap to go from normal to cancer. And the cell type is generally the same, squamous cell carcinoma, so the time frame is similar for anal cancer I would imagine. This is what I've been told.
What's on your mind that your asking this? or just curious?
it's one question that I have had dangling out there with no concrete answer. I was symptomatic about 9 months before diagnosis. I was wondering how long it was there before the symptoms actually started. I was staged at a II OR IIIB(slight possibility of lymph node involvement.) I do understand that the larger the mass becomes, the more aggressive it becomes. Is that always the case. Again, simple curiosity.0 -
OK . . .7243 said:Grade of Tumor
In line with Martha ... tumors are graded I, II, III from low grade well differentiated to high grade poorly differentiated ... the higher grade the more aggressive as I understand; replicates faster, perhaps more likely to metastasize ... perhaps. As I understand, Poorly differentiated cell types are less predictable,more aggressive and a bit more chaotic. You could google anal cancer "Tumor Grade" for more discussion. Grade does not determine stage ... as I've read higher grade tumors types tend to have a poorer prognosis, however my oncologists did not go into much about the grade of the tumor I had, which was 1.4 cm in size and grade II - III with no nodal involvement; Early Stage I.
Hope that helps in some way.
Just read this. Tell you the truth, I don't think I ever knew the grade of my tumor. Will ask my doc at follow-up in Nov. Thanks!!!!!0 -
this makes sense7243 said:Growth
Angela ... nice new photo by the way!
From what my oncologists and colo rectal surgeon share with me and from what I've read ... years! It can take 10 years or more for an abnormal pap to go from normal to cancer. And the cell type is generally the same, squamous cell carcinoma, so the time frame is similar for anal cancer I would imagine. This is what I've been told.
What's on your mind that your asking this? or just curious?
I believe I may have had my cancer for more than seven years. The pain down my right leg started in 2003 and it is gone now. In spite of having the heavy leg pain and hot hip and back bones, I am much healthier feeling than I was before treatment. Healthier almost since I can remember, it's been so long. I asked my doctor point blank what stage I was at and she said "IT DOESN'T MATTER, THIS TREATMENT PLAN WILL WORK." So I just dropped the question but I know there was lymph node involvement T2N1 or later they said "suspicious". So it's a mystery. The Radiologist said there was an 85% chance the treatment would work which I thought was pretty good.0 -
Angela--Angela_K said:I am just curious . . .
it's one question that I have had dangling out there with no concrete answer. I was symptomatic about 9 months before diagnosis. I was wondering how long it was there before the symptoms actually started. I was staged at a II OR IIIB(slight possibility of lymph node involvement.) I do understand that the larger the mass becomes, the more aggressive it becomes. Is that always the case. Again, simple curiosity.
I think from everything I've read that outcomes are better with Stage I and II tumors. This makes total sense to me but I don't know if larger tumors become more aggressive, as you stated.0 -
Hi Angela
I definitely had the cancer at least 1 1/2 years before diagnosis. I know this because I had what was diagnosed as a skin tag. A year and a half later I developed a second external 'thingie', went back to colo-rectal and at that time saw a more experienced surgeon. She biopsied both and said the 'skin tag' (which it wasn't) and the other thingie were both cancerous.
Because of severe constipation issues I had for at least a couple of years prior to getting the skin tag, I feel the cancer was growing then, internally (making it hard to go).
That would mean the cancer was growing for at least 3 1/2 years (as near as I can figure) before it was diagnosed. Other than the constipation, I had no obvious issues until the skin-tag-that-wasn't-a-skin-tag thing appeared.0 -
Dangling QuestionsAngela_K said:I am just curious . . .
it's one question that I have had dangling out there with no concrete answer. I was symptomatic about 9 months before diagnosis. I was wondering how long it was there before the symptoms actually started. I was staged at a II OR IIIB(slight possibility of lymph node involvement.) I do understand that the larger the mass becomes, the more aggressive it becomes. Is that always the case. Again, simple curiosity.
I have concerns about HPV 16. The tumor was positive for this ... and I've been married and we're monogamous and have been for about 19 years. I'm afraid the high risk HPV is still there and will ultimately result in another tumor in years to come. I've scoured the internet but there is no "approved" treatment for high risk HPV. I'm thinking about contacting the UCSF Dysplasia clinic to discuss any clinical trials for Anal Cancer Survivors/Thrivers to see if there are clinical trials or any research projects related to post anal cancer patient's and HPV. I know they struggle to get standard protocols for anal surveillance/anal PAP testing, let alone clinical trials for HPV drug therapy, although there are at least 3 drugs in the works for treatment. So I worry about this ... my vagina, vulva and my anus as far as future disease. I'm aggravated as I was never diagnosed with HPV until the tumor was positive for it ... my PAPs normal and no HPV in the dual test PAP and HPV they now do as standard screening. I know we've discussed this before ... just needed to get it out there agian...
I've had anal bleeding for 15 years ... "hemorrhoids" they said. Got worse a year prior to diagnosis ... according to colo rectal surgeon ... likely cancer there a long time. Tumor was small ... 1.4 cm ... no nodes. A small ulcer in the distal rectum showed SCC.0 -
Dysplasia Clinic @ UCSF7243 said:Dangling Questions
I have concerns about HPV 16. The tumor was positive for this ... and I've been married and we're monogamous and have been for about 19 years. I'm afraid the high risk HPV is still there and will ultimately result in another tumor in years to come. I've scoured the internet but there is no "approved" treatment for high risk HPV. I'm thinking about contacting the UCSF Dysplasia clinic to discuss any clinical trials for Anal Cancer Survivors/Thrivers to see if there are clinical trials or any research projects related to post anal cancer patient's and HPV. I know they struggle to get standard protocols for anal surveillance/anal PAP testing, let alone clinical trials for HPV drug therapy, although there are at least 3 drugs in the works for treatment. So I worry about this ... my vagina, vulva and my anus as far as future disease. I'm aggravated as I was never diagnosed with HPV until the tumor was positive for it ... my PAPs normal and no HPV in the dual test PAP and HPV they now do as standard screening. I know we've discussed this before ... just needed to get it out there agian...
I've had anal bleeding for 15 years ... "hemorrhoids" they said. Got worse a year prior to diagnosis ... according to colo rectal surgeon ... likely cancer there a long time. Tumor was small ... 1.4 cm ... no nodes. A small ulcer in the distal rectum showed SCC.
I know someone who is an AC survivor who is going for regular checks at this clinic. He is being monitored closely for cell changes. I don't know of any clinical trials there, but you could check their website, which has extensive information. My acquaintance is being cared for by Dr. Barry.
I think we all have concerns about HPV and how it may rear it's ugly head again. My tumor was never tested for HPV, but I have since had to undergo removal of anal warts that were caused by HPV, so I know I carry the virus. It does not go away, just lies dormant (and hopefully stays that way).0 -
Angela
I think I must have had scc for over a year. Mine was kind of large - 6cm, but don't know if that was vertical or horizontal. When I asked the med onc what the size was he said a lemon... I remember the rad onc telling me I should come in 6 months sooner. I just love doctors' comments...(like I didn't know I should have taken care of it sooner)0 -
Thanks Martha. I may getmp327 said:Dysplasia Clinic @ UCSF
I know someone who is an AC survivor who is going for regular checks at this clinic. He is being monitored closely for cell changes. I don't know of any clinical trials there, but you could check their website, which has extensive information. My acquaintance is being cared for by Dr. Barry.
I think we all have concerns about HPV and how it may rear it's ugly head again. My tumor was never tested for HPV, but I have since had to undergo removal of anal warts that were caused by HPV, so I know I carry the virus. It does not go away, just lies dormant (and hopefully stays that way).
Thanks Martha. I may get connected out there ... I'll speak to my oncology physicians and colo-rectal surgeon this next visit in November. I really appreciate the information. Take care Martha!0 -
GradeAngela_K said:OK . . .
Just read this. Tell you the truth, I don't think I ever knew the grade of my tumor. Will ask my doc at follow-up in Nov. Thanks!!!!!
You know, it's hard to figure what we're told and what we're not told. And it depends on the interests of the physician. Generally people would not ask for this information. And frankly, many patients are not told the stage of the disease if you can imagine that. I've been so disappointed in some of the care I received. Health care is so competitive in my location that I think physician's put a rosy tone on what they initially told me just to get a "customer with good insurance coverage ... "oh this is something we deal with all the time" (after the fact ... in a mid sized southwest city ... right anal cancer "all the time") and "if we thought you needed to go out of town for this we would definitely tell you that". Right. "We don't even think you'll need the services of an oncologist this is so early ... likely we'll excise this lesion and you'll only need close follow-up". Everyone on the same page: GI, Colo-rectal, and oncologist. So they excise what is supposed to be Bowen's Disease or high grade dysplasia and it's actually a 1.4 cm high grade SCC tumor with margins. Frankly I don't think the colo-rectal surgeon looked at the rectal untra-sound before the excision just approaching this surgically ... BUT, when you're a hammer, everything is a nail! Okay ... so I had to get that off my chest.
And many patients really don't want to know too much ...0 -
72437243 said:Thanks Martha. I may get
Thanks Martha. I may get connected out there ... I'll speak to my oncology physicians and colo-rectal surgeon this next visit in November. I really appreciate the information. Take care Martha!
You're very welcome. They have a very good website. Also, there is information about UCSF on the Anal Cancer Foundation website.0
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