is it really gone?
Hi all,
My mom just went today to her colorectal surgeon who orginially diagnosed her (since the first idiot 3 months before misdiagnosed her). We walked into the office he said what are you doing here already? She told him, his office called her to book the appointment 3 weeks ago. He said he didn't think it was long enough for a thorough exaM, but said he would take a peek. He looked and his exact words "well it looks like it melted! All I see is a hole (no pun intended)" he said for her to come back June 18 for a through exam and they would schedule the official biopsy 2 weeks after that. I'm so thrilled with this news but is it enough evidence to say she is NED? everyone knew she was going to the dr today and all ask "is it gone, what did they say?" We confidentially want to say yes. Regardless of official tests what he saw before he doesn't see now?
Comments
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Great news!
By the time I got to start treatment, I had a cancerous tumor poking through my skin next to my anus. I knew that the treatment was working because within just 2 weeks or so, the exterior tumor had completely melted away. So, I would say that "melted" is a very good word to use!
However, before the CR doctor automatically does a biopsy, consider an anal pap smear and colposcopy during the anoscoping or sigmoidoscoping. An anal pap smear and colposcope will tell the doc if your mother needs a biopsy. Only if a patch of suspicious tissue shows up in the colposcope will a puncture be neccessary. If she can get away from biopsies, she will avoid some nasty pain as the irradiated tissue is very, very delicate and can take a while to heal afterwards.
Here's information on the procedure from the University of California at San Francisco. Ignore where they mention HIV/AIDs at their site - they happen to sub-specialize in treating persons with anal cancer who are HIV-infected. The website and descriptions are just the same as for those without HIV: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/ -and- http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/screening.html
It's possible that the CR doc won't be happy unless he can biopsy. It may be more reassuring to your mother, too. If that's the case, after a round of anal biopsies, she may just want to avoid them in the future, if they aren't indicated during an anal pap smear/colposcopy. Ouch!
["Melt" is also my relaxation word. I find it impossible to remain anxious and tense when I say and picture melting. I even feel my muscles relaxing as I'm typing.....ah!......]
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yOuch_Ouch_Ouch said:Great news!
By the time I got to start treatment, I had a cancerous tumor poking through my skin next to my anus. I knew that the treatment was working because within just 2 weeks or so, the exterior tumor had completely melted away. So, I would say that "melted" is a very good word to use!
However, before the CR doctor automatically does a biopsy, consider an anal pap smear and colposcopy during the anoscoping or sigmoidoscoping. An anal pap smear and colposcope will tell the doc if your mother needs a biopsy. Only if a patch of suspicious tissue shows up in the colposcope will a puncture be neccessary. If she can get away from biopsies, she will avoid some nasty pain as the irradiated tissue is very, very delicate and can take a while to heal afterwards.
Here's information on the procedure from the University of California at San Francisco. Ignore where they mention HIV/AIDs at their site - they happen to sub-specialize in treating persons with anal cancer who are HIV-infected. The website and descriptions are just the same as for those without HIV: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/ -and- http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/screening.html
It's possible that the CR doc won't be happy unless he can biopsy. It may be more reassuring to your mother, too. If that's the case, after a round of anal biopsies, she may just want to avoid them in the future, if they aren't indicated during an anal pap smear/colposcopy. Ouch!
["Melt" is also my relaxation word. I find it impossible to remain anxious and tense when I say and picture melting. I even feel my muscles relaxing as I'm typing.....ah!......]
thank you all!, while she is feeling better she still is very sore. We are just 8 weeks out of treatment. She is trying to keep it dry but says it wheeps? A little bit of clear fluid. While she is positive for a full recovery I can tell in her voice she is discouraged. She has been in pretty good control of BM, but can sit for to long, or stand becasue of fatigue but doesn't want to lay in bed all day (laying down is the only comfortable position) I thank all of you for your support along the way, this truly was my safe haven in helping her cope!
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The CT said in 6 weeks heOuch_Ouch_Ouch said:Great news!
By the time I got to start treatment, I had a cancerous tumor poking through my skin next to my anus. I knew that the treatment was working because within just 2 weeks or so, the exterior tumor had completely melted away. So, I would say that "melted" is a very good word to use!
However, before the CR doctor automatically does a biopsy, consider an anal pap smear and colposcopy during the anoscoping or sigmoidoscoping. An anal pap smear and colposcope will tell the doc if your mother needs a biopsy. Only if a patch of suspicious tissue shows up in the colposcope will a puncture be neccessary. If she can get away from biopsies, she will avoid some nasty pain as the irradiated tissue is very, very delicate and can take a while to heal afterwards.
Here's information on the procedure from the University of California at San Francisco. Ignore where they mention HIV/AIDs at their site - they happen to sub-specialize in treating persons with anal cancer who are HIV-infected. The website and descriptions are just the same as for those without HIV: http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/ -and- http://id.medicine.ucsf.edu/analcancerinfo/diagnosis/screening.html
It's possible that the CR doc won't be happy unless he can biopsy. It may be more reassuring to your mother, too. If that's the case, after a round of anal biopsies, she may just want to avoid them in the future, if they aren't indicated during an anal pap smear/colposcopy. Ouch!
["Melt" is also my relaxation word. I find it impossible to remain anxious and tense when I say and picture melting. I even feel my muscles relaxing as I'm typing.....ah!......]
The CT said in 6 weeks he would do a thorough exam? Then 2 weeks after a biopsy? While I feel confident about a biopsy being enough evidence wnat about scans? I know from what I've read all Dr's are different I just want to make sure we cover all bases!
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A couple of things.....swood9008 said:The CT said in 6 weeks he
The CT said in 6 weeks he would do a thorough exam? Then 2 weeks after a biopsy? While I feel confident about a biopsy being enough evidence wnat about scans? I know from what I've read all Dr's are different I just want to make sure we cover all bases!
When you say your Mommy is weeping clear fluid, do you mean the skin that was irradiated? If so, have the radiation oncologist (R-O) look at her. It may be from traumatized skin - the MD can make suggestions on topical meds to use and if anything like my R-O, will say FIRST before even looking at her, "keep doing those sitz baths!" It's possible that her traumatized skin has become infected - the R-O can prescribe for that, too. If you mean that she's weeping rectally, the clear fluid could be mucus, a normal result of GI cells under attack by chemotherapy and radiation. Have her see either the R-O or her colo-rectal sugeon for suggestions and perhaps perscriptions.
[People always recommend Aquaphor for the radiated skin, but the lanolin in it irritates me and I don't eat meat, anyway, so I use Albolene instead (nearly the same sans lanolin). They are both at ordinary drugstores. Cocoa butter may be helpful and coconut oil, too. Crisco has started selling an organic coconut oil that's cheaper than the drustore or health food variety - at the oils section in the supermarket.]
If you haven't already, see the NCCN site for the current standard protocols in anal cancer. It's free with registration (you don't need to be a medical professional, though the site is written for them). Read their "Anal Carcinoma" document for treatment and follow-up care standards. You can print it out and take it with you to MD visits to discuss with your Mommy's various doctors.
When she's up to it, get Mommy into a physical therapy program certified for cancer patients. The STAR program is the only such certifying body I know of in the USA. On their home page, look at the upper right-hand corner for a tool to help you find the closest one. It helped me a lot to regain strength and stamina, stop dropping things, helped with pelvic floor excercises (not Kegels!) which improved control and reduced pain, and gave me stratgies for dealing with the cognitive effects of so-called "chemo brain".
Unfortunately, recovery will last a lot longer than treatment did. >_<
Resources ---
* NCCN (National Comprehensive Cancer Network) - http://www.nccn.org/
* STAR location finder - http://www.oncologyrehabpartners.com/
* HPV and Anal Cancer Foundation, "How Can Physical Therapy Help with Anal Cancer Recovery?" (series of 3 articles) - http://www.analcancerfoundation.org/2014/09/24/can-pt-help-anal-cancer-recovery/
* American Cancer Society, "Chemo Brain: It is Real" - http://www.cancer.org/cancer/news/expertvoices/post/2012/04/09/chemo-brain-it-is-real.aspx
* American Cancer Society, "Getting Help for Chemo Brain" - http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-031604.pdf0
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