Finally diagnosed
Hi! Am new to this board. Diagnosed about 6 weeks ago, had major symptoms since November, but looking back probably all summer. A GYN actually felt the tumor in December and decided what he felt that was "hard as a rock" was constipation, didn't even do a rectal, and ordered a D&C and ablation as I was having "dysfunctional uterine bleeding" from fibroids. I'm 63. An ablation would have been about the worse thing I could have had. Fortunately knew enough to refuse and went to a different GYN in January and she found the tumor right away, said the DUB was from the tumor that had gone through the vaginal wall. Not sure about that, but know the tumor is into the vaginal wall. I'm stage 3 because a couple of lymph nodes were positive right around the tumor, but it has still taken all this time to get treatment going--biopsies, PET, port, etc. Starting radiation and chemo on Monday. Scared to death. Anabel--going through the same emotional rollercoaster as you. But I think denial is a good thing for the moment--there is nothing more that I can do at this point. It will be real again soon enough on Monday when I start treatment.
Now have 3 great doctors who think there is a good chance the tumor will be gone by the end of treatment and "only" a 40% chance it will recur. Wish I could believe that.
Wishing everyone on this board good news. Hope to get to know you better and give what support I can.
MKW
Comments
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Sorry you're having to go through this
and surprised that the one doctor said the lump was constipation.
I haven't gotten to the stage you're at yet so I can't give advice but there's so many great people on this board that have already been through it and come out on the other side. As for the emotional roller coaster...I feel you on that one. Not sure if denial is the best route but maybe finding even one thing that brings you joy and focusing on that, will help you feel a bit better or at least distract you for a little while.
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MKW
I am also sorry that you are going through this. There are so many people on this board with so much expertise, feel free to ask questions. My expertise comes from experience. I finished treatment 12 weeks ago. Everyone's experience is different and a positive attitude is really helpful (not that you can't crumble on occasion!). I think you will feel better mentally when the treatment begins, I think waiting for things to happen is so stressful. I had PET scan today and hopefully will get results tomorrow. I don't want to wait.
You WILL get through this. I will be thinking of you and sending good thoughts your way.
Judy
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MKW213
I'm so sorry that you have found yourself on a cancer support site--none of us wished to ever be here. However, I'm glad you've found us and I hope we can help you with support and advice. Your story mirrors so many others when it comes to being initially misdiagnosed. My story was very similar, only my internist told me I had a bleeding hemorrhoid. Thank goodness you got a correct diagnosis and will begin treatment next week. I know it's a scary time, not knowing what to expect. However, lots of the people on this site have been there, done that, and we will share with you what may help make all of this easier for you. Just tell us what you need from us. I truly believe that once you begin treatment, you will feel more empowered, like you are finally doing something to get rid of this disease. Waiting for that first day is difficult because you are in limbo. I'm glad you are in good hands with your doctors and I hope that Monday will go well for you. You can get through this, just like the rest of us did. Take it one day, one hour or one minute at a time. Soon you'll be on the other side of it!
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Judyjudyv3 said:MKW
I am also sorry that you are going through this. There are so many people on this board with so much expertise, feel free to ask questions. My expertise comes from experience. I finished treatment 12 weeks ago. Everyone's experience is different and a positive attitude is really helpful (not that you can't crumble on occasion!). I think you will feel better mentally when the treatment begins, I think waiting for things to happen is so stressful. I had PET scan today and hopefully will get results tomorrow. I don't want to wait.
You WILL get through this. I will be thinking of you and sending good thoughts your way.
Judy
I wish you all the very best with your PET scan results. I'm glad you will have them by tomorrow and may everything look good!
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ThanksAnabel_Lee said:Sorry you're having to go through this
and surprised that the one doctor said the lump was constipation.
I haven't gotten to the stage you're at yet so I can't give advice but there's so many great people on this board that have already been through it and come out on the other side. As for the emotional roller coaster...I feel you on that one. Not sure if denial is the best route but maybe finding even one thing that brings you joy and focusing on that, will help you feel a bit better or at least distract you for a little while.
Thanks Anabel. Not even sure how I found this site, but it seems like there is a wealth of information. I can't believe what I've been through the past 4 months. None of it has been really awful, but just the amount of testing, etc. However, all the medical folks I have encountered, with the exception of the 1 doc, have been fantastic and am anxious to get this going! The waiting for procedures and test results were (and will be in the future, I'm sure) the worst.
Being a medical transcriptionst for 40+ years, I've learned a thing or two about medicine. However, this is a whole new "adventure." Reported the first doctor to the health department, as if he had done what he SHOULD have, I would be in treatment already. He also did a couple other things that were very unprofessional, like scheduling me for a procedure without telling me anything about it or consulting me But it led to finding a wonderful GYN, so there's that. My regular GYN was retiring and my new GYN had a waiting list, so was stuck in the middle with him. As my husband says, I have to let this go!
I guess distraction is really what I mean by denial. I knew I had something pretty bad long before the docs did. I will use the word distraction from now on. Thanks!
You hang in there. Sounds like we both relatively newbies to this.
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Thanks!mp327 said:MKW213
I'm so sorry that you have found yourself on a cancer support site--none of us wished to ever be here. However, I'm glad you've found us and I hope we can help you with support and advice. Your story mirrors so many others when it comes to being initially misdiagnosed. My story was very similar, only my internist told me I had a bleeding hemorrhoid. Thank goodness you got a correct diagnosis and will begin treatment next week. I know it's a scary time, not knowing what to expect. However, lots of the people on this site have been there, done that, and we will share with you what may help make all of this easier for you. Just tell us what you need from us. I truly believe that once you begin treatment, you will feel more empowered, like you are finally doing something to get rid of this disease. Waiting for that first day is difficult because you are in limbo. I'm glad you are in good hands with your doctors and I hope that Monday will go well for you. You can get through this, just like the rest of us did. Take it one day, one hour or one minute at a time. Soon you'll be on the other side of it!
I'm glad I found this site, too. Have a lot of support from family and friends, but helps to talk to folks who are going or having been through it. Am learning an awful lot about myself, like I am apparently much stronger than I thought. And that there is a world of difference between the small-city doctors around here and the big-city medical center docs 50 miles away. Thank you so much for you comments.
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MKW Newly diagnosed
My case seems to be quite similar as yours. I was AC IIIb. I went through the standard protocol. It was rough! I completed my XRT therapy the end of Sept., '13. Every 3 mos. I have a PET & they have all been negative. I feel pretty good now. I hope this positive report will be a source of encouragement to you. Ask us questions. It seems everyone's case is a little different.
Wishing you the best!
Nicotianna
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Dear Friend,
Although I am a 49 year old male with rectal cancer, I went through the same treatment what you will start on Monday. I suggest you start moisturizing the entire area that will be radiated and your hands and feet starting now and doing it at least 3 times a day. Radiation burns the skin like strong sunlight, plus with the chemo it shots down all the glands that naturally produce oils and mucus. They will recommend you ointments and most of them are good. I used Bio-oil from Costco or target.
let us know and good luck.
Laz
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MKW213MKW213 said:Thanks
Thanks Anabel. Not even sure how I found this site, but it seems like there is a wealth of information. I can't believe what I've been through the past 4 months. None of it has been really awful, but just the amount of testing, etc. However, all the medical folks I have encountered, with the exception of the 1 doc, have been fantastic and am anxious to get this going! The waiting for procedures and test results were (and will be in the future, I'm sure) the worst.
Being a medical transcriptionst for 40+ years, I've learned a thing or two about medicine. However, this is a whole new "adventure." Reported the first doctor to the health department, as if he had done what he SHOULD have, I would be in treatment already. He also did a couple other things that were very unprofessional, like scheduling me for a procedure without telling me anything about it or consulting me But it led to finding a wonderful GYN, so there's that. My regular GYN was retiring and my new GYN had a waiting list, so was stuck in the middle with him. As my husband says, I have to let this go!
I guess distraction is really what I mean by denial. I knew I had something pretty bad long before the docs did. I will use the word distraction from now on. Thanks!
You hang in there. Sounds like we both relatively newbies to this.
I was a medical transcriptionist for a few years too--you really learn a lot on that job! As for the bad experience with that one doctor, I would recommend going to the Vitals.com website, looking him up, then grading him and writing a review. It may not erase your bad experience with him, but it might save someone else from going to him. I'm not sure what your experience was, but if he did anything unethical in your treatment, you have the right to file a formal complaint with the medical licensing board in your state.
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MKW213.....
I always feel sad to welcome another to our family here but as I've said in the past we don't choose our families......and you are in luck, because as far as families go, this is one of the best!
Thinking about the start of treatment can be scary, but somehow once it starts and there is an active plan in place the fear is lessened. Everyone reacts different yet has much in common, so PLEASE don't hesitate to ask as concerns arise, since more than likely someone here has some helpful advice. Keep in mind nothing is off limits (just read briefly through some old posts).
I am 3 yrs post treatment and doing great, but that roller coaster ride somehow still manages to catch me every so often right out of the blue..........but then just as fast as it comes, it leaves now, and its not so much fear as an annoyance.
I will be thinking of you as you embark on this journey and move forward in health!
katheryn
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Question about 24/7 chemoeihtak said:MKW213.....
I always feel sad to welcome another to our family here but as I've said in the past we don't choose our families......and you are in luck, because as far as families go, this is one of the best!
Thinking about the start of treatment can be scary, but somehow once it starts and there is an active plan in place the fear is lessened. Everyone reacts different yet has much in common, so PLEASE don't hesitate to ask as concerns arise, since more than likely someone here has some helpful advice. Keep in mind nothing is off limits (just read briefly through some old posts).
I am 3 yrs post treatment and doing great, but that roller coaster ride somehow still manages to catch me every so often right out of the blue..........but then just as fast as it comes, it leaves now, and its not so much fear as an annoyance.
I will be thinking of you as you embark on this journey and move forward in health!
katheryn
I am SO glad I found this site. I feel more positive about my outcome.
The big question I have, which will be answered on Monday but would like to know now, is how the 24-hour chemo works. I have a port, know the infusion will go in there, but what kind of dressing is put on to keep it in place. I'm concerned mostly about sleeping, as I toss like a fish out of water and am afraid I'll dislodge something. I will "only" have it in place for 4 days, and figure it must be anchored in place pretty well, but just curious. Thanks for any info!
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Thanks!lp1964 said:Dear Friend,
Although I am a 49 year old male with rectal cancer, I went through the same treatment what you will start on Monday. I suggest you start moisturizing the entire area that will be radiated and your hands and feet starting now and doing it at least 3 times a day. Radiation burns the skin like strong sunlight, plus with the chemo it shots down all the glands that naturally produce oils and mucus. They will recommend you ointments and most of them are good. I used Bio-oil from Costco or target.
let us know and good luck.
Laz
Thanks for reminding me about the pre-moisturizing, so will do that. The cancer center I'm going to is fantastic--went with a friend a few years ago to the local one, so have something to compare it to. Had a chemo class with every possible (I hope) side effect discussed. And the radiation people have given me all kinds of information and talked with me.
Feel much more positive about my outcome since finding this site. Thanks again and good luck to you.
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PortMKW213 said:Question about 24/7 chemo
I am SO glad I found this site. I feel more positive about my outcome.
The big question I have, which will be answered on Monday but would like to know now, is how the 24-hour chemo works. I have a port, know the infusion will go in there, but what kind of dressing is put on to keep it in place. I'm concerned mostly about sleeping, as I toss like a fish out of water and am afraid I'll dislodge something. I will "only" have it in place for 4 days, and figure it must be anchored in place pretty well, but just curious. Thanks for any info!
The 24 hour four day 5FU chemo I had was administered through a needle put in my port with chemo pump pack. There was no pain with this. They also admistered the mytomycin through my port in the chemo area. I laid the chemo pack on my side on the bed. It was a little tricky on the shower though. I placed the pump pack outside the shower door. There was no dressing placed on the port area. There was never any problem with the needle coming out or moving. Make certain your port is flushed regularly to avoid any blood clot potential. Hope this helps some.
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Question about 24/7 chemoMKW213 said:Question about 24/7 chemo
I am SO glad I found this site. I feel more positive about my outcome.
The big question I have, which will be answered on Monday but would like to know now, is how the 24-hour chemo works. I have a port, know the infusion will go in there, but what kind of dressing is put on to keep it in place. I'm concerned mostly about sleeping, as I toss like a fish out of water and am afraid I'll dislodge something. I will "only" have it in place for 4 days, and figure it must be anchored in place pretty well, but just curious. Thanks for any info!
No worry about the port being dislodged. The dresssing placed is usually tegaderm, a clear tough dressing, plus tape. The tubing that will connect to the port can catch on stuff. What I did was to take an old knee high & cut the foot off. I covered the tubing on my arm & it looked sort of inconspicuous & kept the tubing in place. It should not be a problem. I took baths to avoid dealing with all the bother of keeping the drsg. dry. It is not the worst thing in the world to not take a shower for a few days! It's 1 of the minor inconveniences you will encounter
Nicotiana
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Thanks!nicotianna said:Question about 24/7 chemo
No worry about the port being dislodged. The dresssing placed is usually tegaderm, a clear tough dressing, plus tape. The tubing that will connect to the port can catch on stuff. What I did was to take an old knee high & cut the foot off. I covered the tubing on my arm & it looked sort of inconspicuous & kept the tubing in place. It should not be a problem. I took baths to avoid dealing with all the bother of keeping the drsg. dry. It is not the worst thing in the world to not take a shower for a few days! It's 1 of the minor inconveniences you will encounter
Nicotiana
Having had 4 hernia repairs, I am VERY familiar with Tegaderm and glad that is what can be used. Good stuff. Re showering, unfortunately during the workup I was found to have a 5th hernia AND am bone-on-bone in my left hip, so need a total hip replacement (not sure I'll bother with the hernia) at some point and tub baths are impossible. I work at home so I'll just open a window, lol. I'm just a mess and used to being inconvenienced. But was very glad the hip wasn't metastasis, so there's that. Good idea about keeping the tubing on the arm. Will keep it in mind. Thanks SO much!
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Thanks!MKW213 said:Thanks!
Having had 4 hernia repairs, I am VERY familiar with Tegaderm and glad that is what can be used. Good stuff. Re showering, unfortunately during the workup I was found to have a 5th hernia AND am bone-on-bone in my left hip, so need a total hip replacement (not sure I'll bother with the hernia) at some point and tub baths are impossible. I work at home so I'll just open a window, lol. I'm just a mess and used to being inconvenienced. But was very glad the hip wasn't metastasis, so there's that. Good idea about keeping the tubing on the arm. Will keep it in mind. Thanks SO much!
I guess I do have "chemo brain" after all! I had a PICC line; not a port. So, not so sure my idea is the best but it still may work
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She's rightqv62 said:MKW213
wishing you the best of luck on Monday, keep us posted and do something fun this weekend
Hope you had a wonderful time this weekend. You will still have good days even throughout treatment. I particularly enjoyed walking my dogs (albeit slowly) and just the long naps I took with them by my side.
Good luck tomorrow.
Sandy
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My Stage was Close to Yours
My diagnosis was Stage IIIB with the tumor through the vaginal wall also with lymph node involvement. Just wanted to tell you that was two years ago, and so far, everything has been clear on the scans. I found the treatment to be rough, but you can get through it and life will be good again. I don't often post, because I think there are so many others who give such good advice on this board. Just thought I would jump in cuz your staging is very close to what mine was, and I know how scary it is. I wish you the best.
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Hi My name Is Tracy I can't
Hi My name Is Tracy I can't give you much advice but everything you describe I had happen to me. I just got done with Radition and Chemo. I am 37 years old with stage 3b cancer went to doctor and got blown off. I really would like to try pass a bill for the doctor to have to take patients more serious. It should be a routine exam to get checked for something like this. My doctor told me it anal cancer and vulvar cancer. i also have been in the medical field for over 15 years new alot about different medical thing but nothing on Cancer. I also thought how did this happen to me. I am active and stay busy working at the time. I worked in ER over 14 years but I am not a nurse just tech. I can tell you about emergency med but not cancer. Iwill tell you stay postive and remember your not alone GOD with you the whole time. Really your attitude is really what will help you through this. i drove myself the whole time and yest I had problems but my husband work and all I had was me. I am just now starting to get side effect nothing hopefully to bad. But hang in therie and remember dont take no for answer and get your self through this. I keep you updt. I will tell you that it a life changing event. i had to get a temp cholestomy because my cancer gave me 75 blockage. Just remeber I am alittle head of you and stay on the website it what gave me motivation. I am not going to let this beat me. I refuse to give up without a fight. I got alot to live for. I prayed alot and did everything my doctor tell me.
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