multiple recurrence after surgeries ?

qv62 said:

update
Horsepad I am also sorry for your loss, and will keep your warnings with me.
To all, my update today is as follows, had my appt today with my colorectal surgeon/oncologist, after discussing my symptons I had an exam and a scope (with camera) , there was a spot that she saw so she did two biopsies in the offfice (extremely painful)both during and after. She said I could have them done like before in the OR but she would have to bring me back in another day and chose to do it while I was there. Biopsy results will be available on Monday and I have a folow up visit with her in two weeks. I asked her what her best guess was and she said not to let it ruin my weekend and that it could just be inflamation, I was in so much pain at that point and didn't have my wits about me to ask then why did we have to biopsy ? Wouldn't inflamation just be inflamation ? Any feedback is welcome.

Thanks in advance

qu62
Ouch! I don't know why they can't numb the area for exams. My biopsy was under anesthesia, but I've had the camera and anoscope and it is uncomfortable. Hopefully, yours is just inflammation and the dr just wants to make sure.

Ann

bettybutler said:

QV62another update
I just want to give you an online hug. My prayers are with you.

Agree with friends
QV ... Let me first say I am so very sorry this is the outcome. Now, I am Not a doctor, but after having issues with the appropriate diagnosis of this cancer at a national cancer institute - teaching institution that is likely good at what they do in high volume ... But did not deal with anal canal cancer much, I HIGHLY recommend you seek out a second opinion at cancer center that deals with anal cancer, especially if the team diagnosing you now is the same team who diagnosed and treated you in the past. I will friend you if you want to discuss you details like where you live and how to get into a comprehensive cancer center - teaching institution. Also look at the NCCN guideline 2012 for the standard of care re; anal cancer.... Look at the NCCN guideline and the physicians who are on the committee that developed the standard and see if any of their practice locations are close to you.

If nothing else .... Print the guideline and take it to your appointment with your team and ask them how the are treating you in relation to the guideline. This is a rare cancer ... If they say they treat many rectal cancers ... Ok fine, but rectal cancer is not the same as anal canal cancer.

Ok ... Praying for you!!! Friend any of us and email using the CSN mail and set urself up to receive private mail if you want to talk privately re; specifics u may not share her in public forum.

You have time .... Try not to feel rushed by your anxiety .... However i understand in my own way ... and this weekend will likely be very difficult given the unknown and upcoming appointments.

As friends here say, it is Best to be in a place you feel comfortable and fully trust your team.

I want to send this bit of encouragement too .... Past treatment is in the past ... You can not change what is done, however ... You can take charge of the present situation. Arm yourself with knowledge, question your team and make a plan based on evidence Based medicine.... You are strong! And you are not alone .... We are here to assist in any way you desire!

Deep breath and a huge hug from me to you this very moment. And if you need more information from your surgeon before the weekend ... Call the office and ask to speak with her ... Have your questions written down and get what you need to be able to at least manage your anxiety this weekend.

qv62 said:

,thank you
Thanks to all since my last post for the prayers, hugs, advice, and encouragement, it is all greatly appreciated. To answer a few of the questions about the protocal, my results showed carcinoma in-situ which is why I feel they did not use chemo/radiation, and chose surgery, I asked the doctor about treatment going foward since we have discussed it in the past but she said we will see what the biobsy in the OR shows on Thursday, as of now it is pre-invasive, so I will follow up and let you all know.To answer more questions I am at a major facility in NYC, I switched there a little shy of 2 years ago, prior to that I was at a large hospital on Long Island, I loved my doctors there but felt I wasn't getting the best info or getting it quickly enough, my last surgery on LI we discussed chemo/radiation, I met with the radioligist and then waited well over 2 weeks for my doctor to meet with the tumor board and make a decision as to treatment or another surgery, that is when I moved on,when I went to the city they recommended another surgery, after the next recurrence was a wide excision along with plastic surgery, flap etc, that I felt would be the end all, after a week in the hospital and 6 weeks of not sitting I thought this was the cure, now I'm frustrated.Having a few surgeries on LI and now a few in NYC I have lost count of surgeries and just want to know it's gone. I have pre-surgical on Mon and will, have the biopsy on Thursday so this is going to be a long week, I thank you all so much and so glad I have found this board. 7243, yes please do friend me, that would be great, I am not too savvy on changing settings etc. but I will take a look

qv62
Thanks for the additional info about your case. Carcinoma-in-situ is not treated with chemo/radiation, so I have a better understanding of your circumstances now. I hope all goes well for you on Thursday and I'm sure you'll keep us posted. Best wishes!

Marynb said:

Qv
You have been through so much with this. The problem with cancer is that it is sneaky and we never really know where rogue cells are hiding. With this cancer we are darned lucky that there is a systemic treatment with the chemo and radiation. Some rare cancers have no systemic treatment. This isn't one of them. I am all for the belt and suspendersmapproach with cancer. Surgery if necessary, then chemo and radiation! No messing around.

Hang in there. You are lucky to be in New York near Sloan Kettering. Maybe you could get second opinions at a different hospital from where you were treated? You are in my prayers. Enough of this cancer! You need to kick this cancer to the curb for once and for all!

Hugs.

Mary

Hi Qv
Hi -

I'm sorry that I haven't chimed in before, but I have been watching your story and it's rather troubling. I'm four years out - was stage 2 but had severe problems with the chemo and am still having walking and bowel problems from the radiation. No more cancer though, which is great.

The fact that you've had more than one surgery without clear margins is worrying. I second the idea of a second opinion (or third). Your doctors seem worried about the effects of chemo and radiation - and I agree with them. Both treatments can cause lifelong side effects that for some are minimal but for others are life-altering.

My mom had carcinoma-in-situ, squamous cell in the anal region - and was treated with surgery only. She's never had a recurrence and all is well with her in that regard. But the fact that you've had numerous recurrences suggests that treatment other than surgery may be required.

You're in a tough predicament. IF you're seeing doctors well versed with anal cancer, and IF they are confident additional surgery will cure you, I would go with them and hope for the best, ie, no more recurrences.

Chemo/radiation is nothing to be taken lightly, nor (of course) is anal cancer. I wish I could be of more help - I may be adding more confusion than anything. You've been through a lot already - surgery in the anal area is not easy (as we all know). Please see if you can find a doctor with experience with anal cancer.

qv62 said:

welcome words
Mary, Rose,& 7243, So glad to hear from all of you, all of your advice and encouragement is appreciated, I just checked in before heading to bed, it's near midnight and I will be heading out at 6:30 tomorrow morning for my pre-surgical tests. I need to be in the city by 9:00 This is the easy part, it is Thursday I am not looking foward to, aside from the biopsy and knowing how uncomfortable I will be afterwards I do not do well with the anesteshia which of course gets me even more worked up. So all of your kind words have been comforting.

qv62
I just wanted to wish you all the best today with your surgical procedure. Please let us know how things went when you are up to it.