Hurry up and Wait
Am I wrong to have these kind of thoughts? I met with a surgeon on 9/8/08 and she told me I have stage 2 cancer. She said for me to have chemo and radiation right away and surgery will probably be in December. I called my Oncologist's office on Monday afternoon with this information and NOTHING is happening! I called on 9/9/08 try see when I will get in and the receptionist said the doctor is aware of my surgeons recomendations, but the doctor hasn't said when I should come in. Does it normally take weeks to figure out what to do and when?
I am getting impatient waiting, waiting, waiting and more waiting. I am irritable all the time, would rather stay in bed then get up and go to work, and don't even want sex. Is all this normal?
Comments
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Waiting is the hardest part....
Hello MC,
Cancer sucks...period. Although, while the surgery, chemo, changes to my body, illness, etc, etc...really sucked...in the end I learned a lot about life and a lot about myself. It's a whole mind-body experience. You're so new in the fight so it will come to you in the way you need it to.
As for your post, most of us here agree that the waiting is the hardest part. Once you get your mind wrapped around the idea of having cancer you just want to "git her done..." Cancer patients want DO something about it...treat it, get it out, move on...totally understandable, but unfortunately the other people we have to deal with in the process don't get it.
If I were in your boots, I would call your onc's office back and tell them you'll hold on the telephone while they figure out a date and time for you to be seen, otherwise you'll stop in and work it out in person. I'm curious...have you had your initial consultation with your onc yet? If not, it could be your onc is waiting on tumor board meetings, consulations with your radiologist and surgeon, but if that is indeed the case...THEY SHOULD TELL YOU THAT!
I completely get it that you're irritable...you are processing a lot of information, life changes, etc...just have to ride it out... And just my humble opinion here...if you're going to stay in bed all day...I say grab a brewski and your babe and shake it up! The endorphin rush might do you some good
Let us know what happens...wishing you well, MC.
Katie0 -
I agree with Katie
Call your oncologist's office and tell them you really need some answers and a plan. It is so hard to sit around and wait. My plans moved fairly quickly. I had surgery within 2 weeks of diagnosis and began chemo about 6 weeks from diagnosis.
And hey - if you feel like it - stay in bed once in awhile. Sometimes it's just too overwhelming to take on anything else.0 -
MC,
Are you living close to the hospital? I think it may be a good idea to go down there personally to ensure that something is being done. Things are moving along on my side. I find that it always helps to let the receptionist know that the doctor said ASAP because they don't seem to be in the loop all the time.
As you already know, I was diagnosed a couple of days later than you (likely stage 3). I totally understand the anxiety. I too am feeling that it is really difficult to get out of bed since sleep provides some form of mental escape (I had problems sleeping the first couple of nights). It still feels like a bad dream even though I have more or less accepted the fact.
Unfortunately, I find myself getting irritable with my 4 yr old. It's really hard but I just try to remind myself that stressing myself creates adrenaline that promotes inflammation which is conducive for cancer growth. I am also trying to exercise more before the radiation/chemo begins to work off my negativity and build up my immune system. I am praying a lot more as well.
I'm reading this book, Anticancer: A New Way of Life by David Servan-Schreiber. It provides some advice on how to do whatever you can by managing your diet and lifestyle.0 -
One more thing, MC...usakat said:Waiting is the hardest part....
Hello MC,
Cancer sucks...period. Although, while the surgery, chemo, changes to my body, illness, etc, etc...really sucked...in the end I learned a lot about life and a lot about myself. It's a whole mind-body experience. You're so new in the fight so it will come to you in the way you need it to.
As for your post, most of us here agree that the waiting is the hardest part. Once you get your mind wrapped around the idea of having cancer you just want to "git her done..." Cancer patients want DO something about it...treat it, get it out, move on...totally understandable, but unfortunately the other people we have to deal with in the process don't get it.
If I were in your boots, I would call your onc's office back and tell them you'll hold on the telephone while they figure out a date and time for you to be seen, otherwise you'll stop in and work it out in person. I'm curious...have you had your initial consultation with your onc yet? If not, it could be your onc is waiting on tumor board meetings, consulations with your radiologist and surgeon, but if that is indeed the case...THEY SHOULD TELL YOU THAT!
I completely get it that you're irritable...you are processing a lot of information, life changes, etc...just have to ride it out... And just my humble opinion here...if you're going to stay in bed all day...I say grab a brewski and your babe and shake it up! The endorphin rush might do you some good
Let us know what happens...wishing you well, MC.
Katie
One thing I learned from this continuing cancer experience is how to be my own medical advocate. This is MY body and I'm fully invested in staying healthy and living to be an old woman. While I would like nurses, assistants, receptionists and even doctors to be as invested as I am, the truth is, they're not...they have hundreds of patients and their own lives with their own problems. I'm not trying to be a downer here, just a reality check.
Take the bull by the horns and advocate for yourself. You need not wait around for others to do...or not do...their jobs. Best advice...be assertive, do research on your cancer (ACS has great info and resouces), ask lots of questions and try not to get discouraged. You have come to a good place here, CSN, to support you and share our experiences. Let us know how we can help.
You will get through this...0 -
getting the news is certainly a life changing event
Getting told you have cancer is certainly a life changing event. It is pretty frustrating at times trying to get answers and it is downright scary to imagine the worse case scenarios.
when I was told I had cancer they could schedule me for surgery but couldn't fit me in for a consultation with the surgeon beforehand. I got a second opinion at that time. It was kind of stressful to say the least. I don't think it is unusual to have sleepless nights and a lot of mood swings when dealing with cancer.
If you are not happy with the service you get you can always get a second opinion which is usually a good idea anyway
Lots of people on this site have made it and you will too.
best wishes on your journey.0 -
I'm with the others.
I'm with the others. Waiting is the worst part. Especially if you are a 'doer' in normal life. We just want to get into getting healthy.
Also, as others have said, it's important to be your own advocate. They shouldn't push you out to far for an appt. I had stage 2 rectal cancer and needed to wait almost 2 weeks for my first consult. it was a time filled with high anxiety - but they explained why the appt was delayed. So stay on them for a reason or an appt.
Cheers to you and keep your eye on the future.0 -
I agree butfunnyguy said:I'm with the others.
I'm with the others. Waiting is the worst part. Especially if you are a 'doer' in normal life. We just want to get into getting healthy.
Also, as others have said, it's important to be your own advocate. They shouldn't push you out to far for an appt. I had stage 2 rectal cancer and needed to wait almost 2 weeks for my first consult. it was a time filled with high anxiety - but they explained why the appt was delayed. So stay on them for a reason or an appt.
Cheers to you and keep your eye on the future.
I totally agree with what others have written. It is not good that you are getting slow/no response, it is important to be pro-active, and waiting is horrible. I will just add this point, though: although we all want treatment to start asap after we are diagnosed, a delay of a few weeks will probably not make a difference to outcome. After my initial diagnosis, I "wasted" a couple of weeks seeking out a second opinion, gathering information, and getting further tests done. (This probably saved my life, but that is another story). I was told that the cancer had probably been growing slowly inside me for at least 5 years, possibly 10 -- and that another couple of weeks would not make a difference to outcome. But of course the waiting is very difficult psychologically. I wish you all the best. Tara0 -
Same heretaraHK said:I agree but
I totally agree with what others have written. It is not good that you are getting slow/no response, it is important to be pro-active, and waiting is horrible. I will just add this point, though: although we all want treatment to start asap after we are diagnosed, a delay of a few weeks will probably not make a difference to outcome. After my initial diagnosis, I "wasted" a couple of weeks seeking out a second opinion, gathering information, and getting further tests done. (This probably saved my life, but that is another story). I was told that the cancer had probably been growing slowly inside me for at least 5 years, possibly 10 -- and that another couple of weeks would not make a difference to outcome. But of course the waiting is very difficult psychologically. I wish you all the best. Tara
The most pain about a couple of weeks is the wait.
Getting the right opinion and treatment for you is most important. It just may require you to be proactive about getting those appointments set up. it's ok to see multiple doctors and be upfront that you are seeking multiple opinions. They'll understand. if they don't then move on.
i also heard the same, "that it was probably growing for several years. Which is frustrating on a whole other level - curse those insurance companies that only encourage (by paying for) colonoscopies for those over 50! (but that's another story as they say). Like people just seek to abuse their colonscopy coverage!!!!! 0 -
I agree with the others
Hi MC,
I agree with the others in what they posted. It sucks to wait and unfortunately we do a lot of waiting when we find out we have cancer. Call your onc again and push for an appt. If they won't give you one, find another onc. Maybe give us where you are and one of us can give you another good onc in the area. My first onc really didn't seem to have my best interest at heart and didn't want to hear my questions. I dumped him for another one and love the one I have. Also, I was told that my tumor was growing for at least 5 yrs but like you I wanted action. With the dx of cancer I needed a plan to focus on so I wasn't overwhelmed by all the emotions I was feeling. Some days like you I just lay in bed and wanted to sleep the truth away. We all have those days. Others, I didn't want to sit still and think about it, I just wanted to do things like I was still normal. Like USAKAT I have found that the 'old' normal will never come back but you find a 'NEW' normal and it is ok also. HUGS and we all know where you are coming from. Be your own advocate and don't let people push you aside. Also, when you do go for the consult, bring someone else with you to listen also. Write down a list of questions with space to write answers. Don't feel funny about not understanding something. The doctor is there to answer your questions and works FOR you.
Lisa F0 -
Good Idea, Lisa!lfondots63 said:I agree with the others
Hi MC,
I agree with the others in what they posted. It sucks to wait and unfortunately we do a lot of waiting when we find out we have cancer. Call your onc again and push for an appt. If they won't give you one, find another onc. Maybe give us where you are and one of us can give you another good onc in the area. My first onc really didn't seem to have my best interest at heart and didn't want to hear my questions. I dumped him for another one and love the one I have. Also, I was told that my tumor was growing for at least 5 yrs but like you I wanted action. With the dx of cancer I needed a plan to focus on so I wasn't overwhelmed by all the emotions I was feeling. Some days like you I just lay in bed and wanted to sleep the truth away. We all have those days. Others, I didn't want to sit still and think about it, I just wanted to do things like I was still normal. Like USAKAT I have found that the 'old' normal will never come back but you find a 'NEW' normal and it is ok also. HUGS and we all know where you are coming from. Be your own advocate and don't let people push you aside. Also, when you do go for the consult, bring someone else with you to listen also. Write down a list of questions with space to write answers. Don't feel funny about not understanding something. The doctor is there to answer your questions and works FOR you.
Lisa F
Yes, MC...Lisa is right by being prepared with questions to ask your onc/radiologist/surgeon when you finally do get to see them...check this out...it's a place to start - you can add to it as it relates to your specific case:
http://www.oncologychannel.com/questions.shtml
And Lisa is right, our group is from all over the US and several other countries as well...we have friends from Canada, Australia, UK, South America, Phillipines, and more....perhaps someone might know a good oncologist or cancer center in your area.
Wishing you well...stay in touch...0 -
Abuse their colonoscopy coverage???funnyguy said:Same here
The most pain about a couple of weeks is the wait.
Getting the right opinion and treatment for you is most important. It just may require you to be proactive about getting those appointments set up. it's ok to see multiple doctors and be upfront that you are seeking multiple opinions. They'll understand. if they don't then move on.
i also heard the same, "that it was probably growing for several years. Which is frustrating on a whole other level - curse those insurance companies that only encourage (by paying for) colonoscopies for those over 50! (but that's another story as they say). Like people just seek to abuse their colonscopy coverage!!!!!
LOL..."hey doc, I know I'm only 32, but I heard colonoscopies are all the rage in Hollywood and are lots of fun! Can I have one too? Oh, please, oh please!" As if....0 -
abuse of colonoscopy coveragefunnyguy said:Same here
The most pain about a couple of weeks is the wait.
Getting the right opinion and treatment for you is most important. It just may require you to be proactive about getting those appointments set up. it's ok to see multiple doctors and be upfront that you are seeking multiple opinions. They'll understand. if they don't then move on.
i also heard the same, "that it was probably growing for several years. Which is frustrating on a whole other level - curse those insurance companies that only encourage (by paying for) colonoscopies for those over 50! (but that's another story as they say). Like people just seek to abuse their colonscopy coverage!!!!!
Thanks for the laugh! Mary0 -
I'm so glad!!!mc1717 said:Finally have an Appt with Onc
Going to see the Oncologist on Friday 9/12/08. Hopefully he will tell me exactly what I want to hear.
Thanks to all for the encouragement and support.
Mick
Don't forget some of the tips. I had a list of questions and brought someone along to listen. It is just so overwhelming when you get to talk to the doctor. I even had a list of chemos so I knew what he was talking about and some of the reactions. Good luck and tell us how it goes!
Lisa F.0 -
You are too much!!!usakat said:Abuse their colonoscopy coverage???
LOL..."hey doc, I know I'm only 32, but I heard colonoscopies are all the rage in Hollywood and are lots of fun! Can I have one too? Oh, please, oh please!" As if....
Me too please!!!! I soooo want to do the prep as a pre cleanse. LOL0 -
Your appointmentmc1717 said:Finally have an Appt with Onc
Going to see the Oncologist on Friday 9/12/08. Hopefully he will tell me exactly what I want to hear.
Thanks to all for the encouragement and support.
Mick
Mick, so glad you have an appointment! Also don't hesitate to ask ANYTHING! don't worry about taking up too much time, about the question not being relevant, etc. We will be waiting to hear how it goes! Mary0 -
You'll feel better once you have a plan
Hi MC,
My husband was told he had rectal cancer on 12/24/07 after his doctor had him get a biopsy from our medical group's general surgeon. After diagnosis was confirmed by the pathologist, we had our first oncology appt on 1/7/08. The onc didn't stage the tumors (we didn't ask and he didn't say) but they knew the main tumor was very big so chemo and radiation was recommended to shrink the tumors before surgery. Also, we were told that the biopsy showed it to be an adenocarcinoma type cancer. I work at a biotech company with a bunch of scientists so I asked a colleague and they said that this was the slow-growing type. We then received a plan of attack from the onc. Chemo/radiotherapy began on 1/14/08 and ended on 2/25/08. The hardest waiting part for us was to have the surgery done. Our onc recommended the general surgeon in our medical group perform the adominal-peritonetal resection, but I insisted on a specialist becuase of the location of the tumors. We went to Stanford. They are very busy at Stanford, so we had to wait until the middle of April to get it done because there were 3 surgeon's schedules to consider (colorectal surgeon, plastic surgeon and specialist for removal of rt-groin lymph node.) It was scary waiting, but we were reminded that this was a slow growing tumor so waiting a couple months would be okay. Everything went as planned and I stressed unnecessarily. We also found out for sure that he was Stage IIIC.
I hope telling you this time-line helps somewhat. Waiting isn't easy, but the cancer has probably been growing for a long time and waiting a little longer will be okay. I will say, though, that if you can't see your oncologist ASAP, I would look for someone who is more available.
My thoughts and prayers are with you. Be strong! Warm regards, ~Melanie0 -
Hurry up and wait is the hardest part
I would agree that one of worst things about cancer is "waiting" for results for appointments for surgery for whatever. I am glad you have an apppointment. I would agree with others if you don't have an appropriate response team look elsewhere.
I was diagnosed with Stage IIIA colon cancer on January 8, 2007 via colonoscopy, I saw the surgeon late that day, I had an MRI and CT the next day - in the morning - I got the results late that day - they were negative. I had surgery scheduled for ten days later - to make sure the biopsy came back positive (it did) - it took 5 days for the biopsy of the surgery came back. I had my staples removed from the surgery 12 days after my colon resection and saw my oncology team 2 days later.
I have had a number of strange CT's and a CEA that was not normal for me in the past year. I have never waited more than an hour for a return phone call or more than two days for CEA, CT results - usually 12 - 36 hours.
I am being treated at Mass General in Boston - I currently have a CEA of 4.5 and clean CT scan I got back in late october to redo CEA and see my oncologist 36 hours later.
The waiting is hard, but you shouldn't have to wait more than necessary.
Pam0 -
Mick, glad to hear thatmc1717 said:Finally have an Appt with Onc
Going to see the Oncologist on Friday 9/12/08. Hopefully he will tell me exactly what I want to hear.
Thanks to all for the encouragement and support.
Mick
Mick, glad to hear that things are moving along for you now. I'm still praying for both of us everyday.
To anyone who has had rectal cancer, how long does it normally take between a simulation/tattoo appointment and the first radiation treatment? I'm told it's about a week. Does that sound right? Many thanks.0 -
Finally!!!
Takked to Oncologist and Radiation Doc today. Treatments will begin on 9/22/08. Next week I will have a port put in and "measured" for radiation treatments.
Oncologist said I will get 5FU using an infusion pump for 5 weeks. Radiation will also be for 5 weeks. After surgery (in December) another 5 weeks of chemo.
The Dr went over possible side effects. I would like to hear from any of you that had 5FU infusion. What were some of your side effects and what did you do.
Anything i need to know about the pump itself? Dr said once it is attached they will go over how to handle it, but again I would like to hear from you. Things like showering with it, sleeping, sex and anything else I need to know.
Thanks again, You all have been so helpful!
Mickey0
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