Question about reoccurrence (again!)

anal cancer is definitely one cancer that can be successfully "killed"....especiallly in stage 1.....tell your mom how many of us have been NED for so long.....i was stage 2....others here are greater stages than that....most people have NO idea the pain and fear that we all experience....i would tell any more visitors to please not mention any people with reoccurrences or no stories of other cancers..... sephie

I'm so sorry this happened to your mom.  Her "friends" certainly seem to be quite insensitive.  Everyone seems to know of someone who didn't survive cancer, but why they insist on telling someone who is recovering from treatment is beyond me.  If I were you (or your mom), the next time someone starts in with these type of remarks, I would would instantly cut them off and tell them that what I need from them is support and encouragement and if they can't do that, then to please say nothing.  I have broken ties with some of my "friends," even some I've known for decades, because they have been insensitive or do not give me any time to talk about what I've been through.  I even had one who told me their divorce was much more painful than what I went through.  Yeah, right.

Your mom's chances at Stage I for recurrence are low.  Like some of the other responses here, I agree that the focus should be on the positives.  I am only about 3 months away from being 7 years out from my diagnosis date, and sometimes I think I should quit visiting this site and two others I frequent and just move on.  However, I find that people want to hear from those of us who have been around awhile and are doing well.  That's why I continue to post.  I was on the fence between a Stage 1 and a 2 and I am still here.  I hope knowing that will give you and your mom some encouragement.

I know it's hard to cut people out of our lives, but I would not hesitate to do so if your mom's "friends" continue to upset her and raise her fears about recurrence.  To me, it's just not worth it, and besides, a REAL friend would not do that.

Martha

Rather than focusing on the 'what ifs" it might be better for you and your mom to focus on the postiives.  If she was ony Stage 1 the prospects of recurrence are minimal.  If any of her "friends" discuss the negatives with her again she and you need to stop them in the conversation on the spot.  Remind them your mom is still in the recovery mode and she needs no negative conversation from her "friends".  Nothing is for sure in life and your mom needs to focus on her recovery and fuctioning a near normal long life.  If it was me I would contact her friends and advise them the damage they have done and not to have those type of discussions with your mom.  All the research you might do is not going to change the fact your mom has had anal cancer and we have to deal with it for the rest of our lives both mentally and physically. By the way I was diagnosed with anal cancer in 2008.  I do have some permanent side effects as a result of treatments but at least I am still here. 

Mike

eihtak said:

Adam26.....

Hi,

I am so sorry for the anxiety your mum has to deal with and you as caregivers as well. I have been on both sides.  People don't always think before they speak, it is a skill we should all be mindful of at times and it is the listener that often suffers.  Fortunately as you have learned anal cancer has a low chance of recurrance especially at her stage. I know a man diagnosed stage 3a and is a 12 yr survivor doing great!

Unfortunately though, life is real, and yes it does still have the potential to recurr.  I am currently under treatment for a recurrance of anal cancer in my lung. (It does not always recurr in the original area)  I had been clear for four years prior to this dx. That being said, my doctors are very optomistic about my treatment. I had surgery five weeks ago to remove the mass in my lung and am now following with chemo.  The surgery alone left clear margins and the chemo is more of a preventative/clean-up measure.......and again, my case is rare!

I have been lucky in that most of my friends are thoughtful in conversations regarding my or other similar situations, but when that unexpected, unwelcome, hurtful, or scary comment is made I have learned to let it go.  My friends are still my friends and I believe they are well meaning at heart. Often things are said out of ignorance or fear themselves. In some situations I am able to "difuse" by educating them on some of the detailed aspects of anal cancer and treatment, which is most often enough to silence a crowd!

Best of luck to you all as your mom moves forward in strength and health.

katheryn

Just want you to know that I am thinking of you and wishing you well. - Tracey

eihtak said:

TraceyUSA....

Hi,

That is so kind of you, thank you. I just finished my first cycle of 5FU/Cisplatin (had the pump for 5 days)....the dosing and schedule is a bit different than the first time around and apparently a touch stronger I am told. It was a rough week as I spent much time afraid to move due to nausea (though I took all the recommended meds to help) and then I refused to let my self vomit for fear of pain in recent lung surgery area. So, I barely ate, slept a lot but not comfortably, developed a dull pain in jaw, cheek, nose, temple, and general bone in face area?? that went away a day after chemo was done and has my doc a bit stumped but said is a noted se with other chemo drugs, and I really questioned how I ever did this before WITH radiation. And today, I have a bad case of thrush!

Kuddos ten times over to all you who are now enduring this treatment!

So, after eating just a little better for two days but still feeling a tad un-well.....I go in to the doc today for a shot (name escapes me right now but to increase white cell production) and, low and behold, RBC is great and white cell count is actually up 1 from before chemo! What? I have decided that in regards to cancer my body is just way too unpredictable so I am going to "try" to just take it as it comes both bad and good....hoping the good prevails.

I have a few weeks off till next cycle so am hoping to nourish and re-hydrate until round 2!

Thank you and others again, for kind words and well wishes.  This ride is made so much more endurable by just knowing we are not alone.

katheryn

I am sending up continuing prayers for you.  I hope you will feel better during the off weeks from chemo!

Martha

eihtak said:

TraceyUSA....

Hi,

That is so kind of you, thank you. I just finished my first cycle of 5FU/Cisplatin (had the pump for 5 days)....the dosing and schedule is a bit different than the first time around and apparently a touch stronger I am told. It was a rough week as I spent much time afraid to move due to nausea (though I took all the recommended meds to help) and then I refused to let my self vomit for fear of pain in recent lung surgery area. So, I barely ate, slept a lot but not comfortably, developed a dull pain in jaw, cheek, nose, temple, and general bone in face area?? that went away a day after chemo was done and has my doc a bit stumped but said is a noted se with other chemo drugs, and I really questioned how I ever did this before WITH radiation. And today, I have a bad case of thrush!

Kuddos ten times over to all you who are now enduring this treatment!

So, after eating just a little better for two days but still feeling a tad un-well.....I go in to the doc today for a shot (name escapes me right now but to increase white cell production) and, low and behold, RBC is great and white cell count is actually up 1 from before chemo! What? I have decided that in regards to cancer my body is just way too unpredictable so I am going to "try" to just take it as it comes both bad and good....hoping the good prevails.

I have a few weeks off till next cycle so am hoping to nourish and re-hydrate until round 2!

Thank you and others again, for kind words and well wishes.  This ride is made so much more endurable by just knowing we are not alone.

katheryn

Katheryn, sending prayes your way for good health throughout and after treatment. I hope the wedding plans are a good distraction during this difficult time and that you can enjoy the planning. Take good care of yourself through rest, nutrition and hydration, keep your eye on the prize. We are all rooting for you and want to hear good news.

Hi, I came across this and wondered if it was what you were looking for:

"A Phase I Study of High-Dose-Rate Brachytherapy plus Chemotherapy in Patients with Recurrent Rectal or Anal Cancer" - http://www.mskcc.org/cancer-care/trial/14-104

Hope all is well......

katheryn