New diagnosis - kind of scared
Comments
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Prayers SentVickiCO said:Well, here we go
I just got a call. There is lymph activity in my pelvic area, and spots and fatty deposits on my liver. What does this mean? I'm not sure. I have to undergo quadrant ultrasound tests ASAP, and probably a whole host of other stuff. My head is reeling. My doctor is away until tomorrow morning, but his assistant is rapidly becoming my lifeline. I do know that the sense of urgency in her voice has increased...
Pray for me. Vicki
Vicki
I'm sending prayers your way. I know this is such a scary time for you. I am sure your head is reeling. There is always so much to think about. It takes time, but after you get all of your tests back and have all of your questions answered, take a deep breath and move forward to fight this beast. Have faith and know that you can get through this. There are many people here that are ready to help.
Faith0 -
Starting to fight backVickiCO said:Well, here we go
I just got a call. There is lymph activity in my pelvic area, and spots and fatty deposits on my liver. What does this mean? I'm not sure. I have to undergo quadrant ultrasound tests ASAP, and probably a whole host of other stuff. My head is reeling. My doctor is away until tomorrow morning, but his assistant is rapidly becoming my lifeline. I do know that the sense of urgency in her voice has increased...
Pray for me. Vicki
I talked with the University Hosp yesterday and they wanted me to wait until NOV 11! for my EUS tests. That is unacceptable to me, another two weeks?? So I sucked up my courage and fought back. I told the nurse I was scared and I didn't think I could wait that long. I talked for several minutes, just downloading on her. She really listened to me. She asked if I could have some patience and let her get creative. She called me back in a few minutes and said she was squeezing me in on Friday morning. She reiterated that there wasn't really an opening, but if I was flexible in case I had to wait a bit, she would push me in. I agreed immediately! We talked a bit more, and then she said "Cookies would be nice also" I am so dumb, I responded "But I can't eat anything after midnight!" She laughed and said the cookies were for the staff who were accommodating me! She was just joking, of course, but I AM taking in treats. It's Halloween after all!
As I said earlier...here we go! Vicki0 -
"Going"VickiCO said:Starting to fight back
I talked with the University Hosp yesterday and they wanted me to wait until NOV 11! for my EUS tests. That is unacceptable to me, another two weeks?? So I sucked up my courage and fought back. I told the nurse I was scared and I didn't think I could wait that long. I talked for several minutes, just downloading on her. She really listened to me. She asked if I could have some patience and let her get creative. She called me back in a few minutes and said she was squeezing me in on Friday morning. She reiterated that there wasn't really an opening, but if I was flexible in case I had to wait a bit, she would push me in. I agreed immediately! We talked a bit more, and then she said "Cookies would be nice also" I am so dumb, I responded "But I can't eat anything after midnight!" She laughed and said the cookies were for the staff who were accommodating me! She was just joking, of course, but I AM taking in treats. It's Halloween after all!
As I said earlier...here we go! Vicki
Hi Vicki,
Pat yourself on the back for taking charge and getting your needs met. I am so thrilled you have a creative nurse who listened to your fears and worked you in. I am glad you said...here "we" go because "we" are certainly with you on your journey.
Hugs,
Kay0 -
THERE'S my girl!!!VickiCO said:Starting to fight back
I talked with the University Hosp yesterday and they wanted me to wait until NOV 11! for my EUS tests. That is unacceptable to me, another two weeks?? So I sucked up my courage and fought back. I told the nurse I was scared and I didn't think I could wait that long. I talked for several minutes, just downloading on her. She really listened to me. She asked if I could have some patience and let her get creative. She called me back in a few minutes and said she was squeezing me in on Friday morning. She reiterated that there wasn't really an opening, but if I was flexible in case I had to wait a bit, she would push me in. I agreed immediately! We talked a bit more, and then she said "Cookies would be nice also" I am so dumb, I responded "But I can't eat anything after midnight!" She laughed and said the cookies were for the staff who were accommodating me! She was just joking, of course, but I AM taking in treats. It's Halloween after all!
As I said earlier...here we go! Vicki
I am so proud of you!!!!!
And, yes, SHE (the nurse that worked the magic) needs some chocolate, along WITH the staff that are treating you with the cookies!
Being our own advocate is such a rush, isn't it? We feel like we have control of a situation that is beyond control in so many ways...
PLEASE keep us posted...
HUGS, Kathi0 -
That's the way!VickiCO said:Starting to fight back
I talked with the University Hosp yesterday and they wanted me to wait until NOV 11! for my EUS tests. That is unacceptable to me, another two weeks?? So I sucked up my courage and fought back. I told the nurse I was scared and I didn't think I could wait that long. I talked for several minutes, just downloading on her. She really listened to me. She asked if I could have some patience and let her get creative. She called me back in a few minutes and said she was squeezing me in on Friday morning. She reiterated that there wasn't really an opening, but if I was flexible in case I had to wait a bit, she would push me in. I agreed immediately! We talked a bit more, and then she said "Cookies would be nice also" I am so dumb, I responded "But I can't eat anything after midnight!" She laughed and said the cookies were for the staff who were accommodating me! She was just joking, of course, but I AM taking in treats. It's Halloween after all!
As I said earlier...here we go! Vicki
Dear Vicki,
That's the way to go! You are and always will be your own best advocate. Everyone here has given you all the best advice (ask questions, take someone with you, get copies of everything, etc etc.) But one of the most important pieces of advice you have gotten here is the one about being kind to yourself! Give yourself a break. If you find yourself getting down, well, that's what antidepressants are for, bless 'em! Listen to your body and do what it tells you to do (within reason, of course; if it tells you to eat a gallon of ice cream you should probably ignore it:)
It certainly sounds like you might have an unpleasant gene in your family. We do. I wish I had known beforehand, so I could have gotten the hysterectomy at the same time as the colectomy. I was dx'd with endometrial cancer 4 months after completing chemo for the colon cancer, so there were 2 surgeries instead of one. My gynecological oncologist said that if it is known that HNPCC is in your genetic makeup, they go ahead and do the hysterectomy at the same time. Oh well. At least my family knows to start getting checked early and often. My sister had a prophylactic hysterectomy this year.
On a lighter note, the staff at any medical office always remember those who bring goodies! Everyone on my medical teams were super, so I try to bring goodies to the offices every once in a while, even though I am almost 2 years out of treatment. Some of the best advice and practical compassion I got was from the chemo nurses. They see it all and patients share their solutions to different issues with them; they are happy to pass on that knowledge.
You know, just now when I wrote "2 years out of chemo" it struck me that it seems long ago and yesterday at the same time. It is my sincere prayer that you also will soon say, "Wow! That was quite a while back!"
Hugs and prayers,
Kirsten0 -
Thanks.
My head is swimming with information today. My doctor is back and his take is yes, there are spots on the liver and we will do quadrant ultrasounds tomorrow, but don't lose sight of the fact they could be 'normal' for me. Also, he doesn't think the 'activity' on the lymph nodes is too scary. I will know more after the biopsy on Friday. He calmed me down a lot. He said from now on, no matter how hard it is to wait, talk to him before I freak out. He also said I was right to push back on University and if I hadn't, he would have intervened. I have a good team.
My dear son-in-law is helping a lot too. He called University (he did his residency there) and made sure I had an anesthesiologist that he knows.
Thanks to everyone here. You are all so supportive. I really appreciate it. I know that even if this is stage 1 (let's hope!) I still have a journey ahead. I have started a fabric journal (I am a publisher of quilting magazines) I plan on making a small, 9x12 inch quilt each week as I go through this. It's very therapeutic.
Onward...Vicki0 -
Getting Ready
Wish me luck... Tomorrow morning at 7am I have the ultrasound of the liver done, then at 10:30 I get the EUS and biopsies. Here's to still hoping for stage 1. I won't really know anything until I go to the Oncologist on Tuesday afternoon.
I wish I knew the doc that is performing the procedures tomorrow. I would paint a jack-o-lantern face on my bum! Oh well, probably better that I don't.
Vicki0 -
Yeah, but TELL them you were thinking about it....lol!VickiCO said:Getting Ready
Wish me luck... Tomorrow morning at 7am I have the ultrasound of the liver done, then at 10:30 I get the EUS and biopsies. Here's to still hoping for stage 1. I won't really know anything until I go to the Oncologist on Tuesday afternoon.
I wish I knew the doc that is performing the procedures tomorrow. I would paint a jack-o-lantern face on my bum! Oh well, probably better that I don't.
Vicki
I LOVED my treatment team....we joked all the time. The one time I came in feeling rotten, they gave me SUCH hugs!
"When you are going through h*ll, don't stop"
Hugs, Kathi0 -
Wish I'd a thought of that!VickiCO said:Getting Ready
Wish me luck... Tomorrow morning at 7am I have the ultrasound of the liver done, then at 10:30 I get the EUS and biopsies. Here's to still hoping for stage 1. I won't really know anything until I go to the Oncologist on Tuesday afternoon.
I wish I knew the doc that is performing the procedures tomorrow. I would paint a jack-o-lantern face on my bum! Oh well, probably better that I don't.
Vicki
I'd do it for sure, although you'd probably have to enlist the help of a very close friend
. Or write the words, this end up 
. Good luck and we will be on pins and needles with you.
mary0 -
back from the tests.
Well, it appears that Fred has broken the wall. I am now Stage 3 (I think 3b because 1 lymph node is involved as well.) Good news is the liver is clear...just fatty cysts. I have now been told I am facing radiation AND chemo, and probably surgery as well.
At least we know what we are fighting....
Vicki0 -
MAN! Does that sound FAMILIAR!VickiCO said:back from the tests.
Well, it appears that Fred has broken the wall. I am now Stage 3 (I think 3b because 1 lymph node is involved as well.) Good news is the liver is clear...just fatty cysts. I have now been told I am facing radiation AND chemo, and probably surgery as well.
At least we know what we are fighting....
Vicki
Did they tell you what kind of cancer??? You could be my twin! Mine was squamous cell, 2 inch tumor, first rectal fold...one lymph node, 3 cysts on my liver!!!
Chemo, radiation, surgery, AND look at me now!!!!
Stand up! Sit down! Fight! Fight! Fight!
Hugs, Kathi0 -
Twins, eh?KathiM said:MAN! Does that sound FAMILIAR!
Did they tell you what kind of cancer??? You could be my twin! Mine was squamous cell, 2 inch tumor, first rectal fold...one lymph node, 3 cysts on my liver!!!
Chemo, radiation, surgery, AND look at me now!!!!
Stand up! Sit down! Fight! Fight! Fight!
Hugs, Kathi
It's like looking in a mirror! LOL!
I don't have all the details yet - I'll get that on Tuesday when we meet with the oncologist. My son-in-law (the doctor - I love to say that!) is attending with us as my translator, so is my husband (my rock!) and a dear friend who is my self-appointed caregiver. She lost her husband four years ago to cancer 23 DAYS after diagnosis. She is in kick-**** mode! So I thought, why not? There are definitely times I will need her. She may as well understand what we face from the get-go.
Oh yeah, the nurses at both hospitals loved the Halloween treats. I have decided to go with the Hope Cancer Center in Longmont. University may be the biggest and has a good reputation, but it is east of Denver, an hour and a half away. Hope is 25 minutes, smaller and VERY family friendly. The Radiology Tech that did my Ultrasound is battling breast cancer herself (and WINNING!) Turns out my oncologist (whom I haven't met yet) is hers as well and she adores him. That was good news. I like those personal recommendations. Another difference was when I went in for my scans and then again for my Ultrasound, the nurses start the visits with hugs. At University, they asked me "Why are you here today?" Read the chart, honey!
I digress... Thanks for the support. I am ready to fight.
BTW Kathi, my daughter was a cheerleader, Pom girl and all that. She still has her uniform and, at age 29, it still fits. (Obviously has her father's genes, not mine!grin) Maybe I'll make her wear it for me occasionally!
Vicki0 -
You can do it!!VickiCO said:back from the tests.
Well, it appears that Fred has broken the wall. I am now Stage 3 (I think 3b because 1 lymph node is involved as well.) Good news is the liver is clear...just fatty cysts. I have now been told I am facing radiation AND chemo, and probably surgery as well.
At least we know what we are fighting....
Vicki
Hey Vicki,
It was almost like looking at a mirror when I read your post except my tumour was in my sigmoid colon... but it too, had broken through the intestinal wall and 1 out of 17 lymph nodes tested positive for cancer. I also had another nice little twist where an abscess had formed around the tumour and had attached itself to my abdominal wall... just to add some excitement to the scenerio. Because of the abscess, I ended up also having perotonitis (infection in the abdominal cavity). Funny how our mind works when we are given this devastating news... yes, I did go into a shock of sorts, but at the same time I was thinking, "Thank goodness for the abscess and abdominal infection! That explains that it wasn't all in my mind when I was complaining about pain on my left side!"
Anywho... I had the surgery, the chemo and the radiation and that has seemed to have done a good job. There has been no sign of recurrence anywhere in the intestinal tract or the abdomen. Unfortunately, it did spread to my right adrenal and there are a few spots on both lungs. We've dealt with the adrenal with more surgery (removed the whole gland plus tumour) and now are about to start working on a plan for the lungs.
But, I'm happy to say, I'm feeling and looking great (ok, mornings are not my best times , and make up definitely enhances the way I look) This weekend I have a bit of a stomach bug, but I don't think it has anything to do with the cancer or the colong/intestinal tract. I think it's just a stomach flu bug I've picked up and hopefully it's just a 24 hour bug
So take heart... yes, there's a journey ahead of you and your head will spin with all the different doctors, radiologists, scans, blood tests, appointments you have to go to... but just deal with it a day at a time. Sounds like you have a great team who will be giving you the treatments and a fabulous support team!
Hugggggggs,
Cheryl0 -
New to Anal CancerKathiM said:53 here, small business owner, 2" tumor in first rectal fold....
4 years ago (I was 49...blush), I sat where you are sitting. Add supporting 2 disabled kids to that.
Take heart, you will become an expert at the lingo (sadly). First and foremost, ALWAYS carry a notepad...write down questions, etc for the doctor. AND never be afraid to ask when you don't understand...YOU are the MOST important part of your treatment team!
Take someone with you when you visit the doctor, if possible..."You have cancer" seems to mess with our hearing...lol.
Ask for a copy of all of your labs/test results. Even if YOU don't understand them, that way you have a full medical record you can ask others about.
Remember that this is just something to get thru....I had chemo/radiation first to shrink the tumor (it was so close to the spinchter that surgery needed to wait), and then a bowel resection that removed my rectum, sigmoid colon, and made a new rectum out of part of my descending colon.
BUT this is NOT about ME! THIS is about YOU!!! Give yourself a hug, RIGHT NOW!!!
Come here frequently, post questions (AGAIN, not a one is stupid!). We are one of the best tumor boards around (TeeHee!).
I am about to round 4 years since diagnosis. Not only am I cancer free, but my 'rectum' can stand up to almost anything, including a severe bout of stomach flu.
Hugs, Kathi
I am new to this site and just started treatment for Anal cancer. I've had one week of chemo and radition and now am on three weeks of just radiation. I've started with some side effects and was wondering if anyone had any advice on what to do with the mouth problems as a result of the chemo. No real sores yet but definately feels strange. What kinds of food won't aggravate, what will taste better?
The ocologist tells me I may not need surgery if the treatment works but everything I've read seems to point to it. I am very nervous about that but your posting gives me heart that even after surgery things will work again. I am also 53.
Peggy0
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