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Finally diagnosed

MKW213
Posts: 19
Joined: Apr 2014

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

 

 

 

 

Anabel_Lee's picture
Anabel_Lee
Posts: 32
Joined: Mar 2014

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.

MKW213
Posts: 19
Joined: Apr 2014

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.

 

 

mp327's picture
mp327
Posts: 2979
Joined: Jan 2010

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.

judyv3
Posts: 72
Joined: Dec 2013

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

mp327's picture
mp327
Posts: 2979
Joined: Jan 2010

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!

mp327's picture
mp327
Posts: 2979
Joined: Jan 2010

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!   

MKW213
Posts: 19
Joined: Apr 2014

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. 

nicotianna
Posts: 88
Joined: Oct 2013

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

lp1964's picture
lp1964
Posts: 856
Joined: Jun 2013

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

 

MKW213
Posts: 19
Joined: Apr 2014

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.

eihtak
Posts: 857
Joined: Oct 2011

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

MKW213
Posts: 19
Joined: Apr 2014

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!

 

mxperry220
Posts: 364
Joined: Mar 2011

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.

nicotianna
Posts: 88
Joined: Oct 2013

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

MKW213
Posts: 19
Joined: Apr 2014

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!

nicotianna
Posts: 88
Joined: Oct 2013

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

qv62
Posts: 296
Joined: Nov 2012

wishing you the best of luck on Monday, keep us posted and do something fun this weekend :)

sandysp's picture
sandysp
Posts: 832
Joined: May 2011

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

MKW213
Posts: 19
Joined: Apr 2014

Read about your infusion somewhere else on here and that it went well.  Again, so glad to hear good news!   Thanks for your encouragement.

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

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.

 

MKW213
Posts: 19
Joined: Apr 2014

Wow! You have no idea how timely your post was. The tone of the colorectal guy when he said stage IIIB was scary, but the oncologist and radiation doc have been much more positive. And now I have your story to add to the positive list. Just got done with first week of chemo and radiation. Chemo was rough. Pump finally out, but still nauseous. Hoping nausea will be gone in a day or two. It doesn't sound like you had to have surgery? I'm hoping not to need any, as I need a total hip and a hernia repair (5th) when I get through all this, but obviously this UFO (unwanted freaking organism, no so lol) will have to take precedence.  Thanks again for your support.

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

No, I didn't have to have surgery, because the PET scan which was done three months after treatment ended showed no signs of cancer, as well as the examination under anesthisia done by the Colo-Rectal Surgeon.  The Colo-Rectal Surgeon was surpised, especially since I had to stop radiation treatments five sessions short of what they had planned, due to white blood cells plumeting to a level which prevented further treatment.....  One VERY IMPORTANT THING the Chemo Oncologist had told me during treatment was that radiation continues to work for up to six months after you are finished your treatment. As you have already found out, some doctors are positive; others just about beat you down with their dire predictions and general tone (this is what my Radiation Oncologist was like - telling me shortly after my treatment ended that I still had cancer and would need to have a colostomy.) Thank goodness the Chemo Oncologist had already told me that radiation continues to work for quite a while after treatment, so I didn't give up hope....... three months later, the scans were clear...... I was nauseous quite a bit also; medication helped to take the edge off. Perhaps they should try a different drug if the one you are currently taking isn't helping that much. It was explaind to me that the one-day chemo which you get at the hospital is the drug which makes you feel nauseous, not so much the chemo in the five-day pump..... So hopefully you will get some relief maybe when that drug works its way out of your system. I'm sure you have been told to drink, drink, drink, (gatorade if you can stand it) to keep yourself hydrated and decrease your nausea... I was not very good at this myself, and maybe that's why I had so much problem with it.  Try to stay positive; I know it is hard.  Ask me anything you want; I am here for you.........Smile

tbuchi
Posts: 10
Joined: Jan 2014

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.

MKW213
Posts: 19
Joined: Apr 2014

I don't believe I would be having treatment even yet if I didn't have the knowledge I've learned over the many years of transcription I've done. Really had no symptoms to speak of and still haven't, knock on wood. Have reported the GYN to the Health Department and they are investigating. He's delivered a couple of my grandchildren, but my BS meter always went off when I did his dictation, he was just too slick and cocky and full of himself. Am sure you have seen your share of rotten docs in the ER. When I first went to the ER with what I thought and still think was postmenopausal bleeding, the attending idiot, VERY foreign with big, crooked yellowish teeth, had the nerve to tell me I had no business being in the ER with this problem (almost needed a transfusion), should have gone to my GYN, and should just have the uterus "yanked" out cuz I didn't need it anymore. Had I been thinking faster and clearer I would have mentioned what I would like to do with his prostate, but couldn't get a word in edgewise with him and never did get his name. Only satisfaction I got was I ranted to the nurse about him just as I was getting ready to leave and when I went out of the room, he was standing there and hopefully heard everything, not that it probably made any difference.  I will keep you in my prayers and hope you have a good outcome. I'm determined to beat this, too.

 

 

magillilnb's picture
magillilnb
Posts: 37
Joined: Feb 2014

I was diagonosed with stage 3 squamous cell carcinoma of the anus back in July - I was stage 3 because of the size of the tumor.  I had a fistula (so far, they can't seem to find it, so it may have healed on its own.) I went through a clinical trial of TIP protocol before starting regular chemo and radiation.  The TIP protocol shrunk my large tumor from 5 cm x 4 cm to 2 cm x 3 cm. Then the regular chemo and radiation did the rest. 

I had the fanny pack 5FU for 5 days twice during radiation. It's not horrible, but I didn't care for lugging that thing around. The cord is very long and I hung the bag on my bed at night and never had problems. Like you, I was nervous about pulling the thing out of my port. And I had to take baths instead of showers, which I didn't care for, especially since it was winter and cold.

I lost my hair from the TIP protocol, but not from the 5FU and mitomycin. I was hospitalized and given transfusions during radiation. I was tired and weak, but I made it through fine, and now I'm on the other side of it all hoping to get my colostomy reversed. 

Do you need a colostomy due to the fistula to keep the waste from getting in your vagina? 

Everyone's experience is different, so don't worry yourself into getting a reaction to something that you wouldn't otherwise get. Listen to your body and maintain a positive attitude (difficult but possible!) and if you have sense of humor, it will help a lot. Let others help you and ask for help if you need it. People want to help and all you need to do is tell them what you need.

I hope you have minimal side effects and are cancer free when it's over.

Take care,

Nancy

 

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