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Todays another day

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

In march I was diagnosed with uterine cancer. Grade 1 stage 1a. Had a di-vinci total hysto with no followup care require other than to see my normal gyno every 6 months for first year. My first 6 month check appeared to have been well and good (no pap smear or anything, she just took a look inside to make sure I was healed from surgery) and declared me NED (not sure how you declare that with only having a 2 min visual look but she is the pro and not me)

 

Fast forward to now, my normal gyno was concerned with (pardon me if i'm being too descriptive) rectal bleeding that I've been having at least 1-2 times a month. So today I go for my colonoscopy (and btw that Golyte stuff they make you drink, is death in a bottle I swear) but I'm nervous. I know my cancer was caught early, and was the lowest grade you can get. But cancer of the colon runs on my dad's side, his brother had it, he recently had 2 that showed cancer in 1 polyup and 1 pre-cancerous. (small and removed at time of his colonoscopy) and that makes me for a very nervous individual today.

 

I know I should not be, and I'm sure today will go by well, and probably get told that it's just hemroids, but I can't stop being nervous. My brain keeps doing the what ifs (my mother and sister are both cancer free) apparently I am the only one to be following my grandmother and great-grandmother. But I have so many things that put me into such a bigger bracket. (overweight, PCOS, never had children, prev. cancer history) All this just comes to the front of my mind and I just feel a little overwhelmed. I guess I'm just looking for a little encouragement. I try not to post often, because I know so many ladies here have suffered so much more than I ever thought possible, and to be honest I feel like with how miner my cancer was, I don't deserve to complain. So for that, I appologize ahead of time.

 

I hope for nothing but the best for everyone here, and cry softly when the journey ends for some. I guess I'm just letting my nerves get the best of me, so my appologies again.

Nellasing
Posts: 529
Joined: Oct 2016

I'm so sorry you are feeling nervous- that is perfectly normal and understandable!  What you've been through is NOT minor and cancer is cancer- it changes you for the rest of your life!  Please post however and whenever you need to and keep coming for love and support of your sisters here- for me this is a great source of comfort and hope because you can see for yourself that no matter what happens there are answers, there is strength and there is someone walking the same journey or who has walked just ahead so you can follow.

I'm glad your Dr. is on top of this and that you are getting tested.  I have never had one, but you will find you do what you have to and it's good- you are honoring your body and your intuition when you listen and act accordingly.  I hope you get the all clear and they figure out what's been going on to cause the bleeding.

We'll be thinking of you for sure!  (((HUGS)))

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

My belief is that no cancer is minor and that we are all in this together. Please know that your opinion is valid even if your experiece is different. It's a good thing that your gyno is vigilant about your symptoms. None of us can take good health for granted. I agree that this will likely turn out to be something other than cancer and then we can all celebrate with you together! Hang in there and try to stay busy while you wait for your results.

MAbound
Posts: 1106
Joined: Jun 2016

Glad to hear from you! I can remember seeing your picture in earlier threads, but you are a quiet one. Remember, this is a "no apology" zone! We're all here for each other whether it's for information, support, or whatever. 

You say that you're normal gyn dr. does your check-ups? Did he/she do your surgery? Even if your cancer was caught early it seems odd to me that you wouldn't have your check ups done by your gyn oncologist.

You'll probably have the results from your colonoscopy before you read this, so hopefully that won't show anything worse than hemorrhoids for you. If that goes well, I think I would suggest a follow-up visit with your gyn oncologist to get your uncertainties and any lingering questions cleared up regarding any remaining risk for recurrance so that you can feel more confident about your care going forward. Mine told me he'll being doing my check-ups for the rest of my life, so that's why I'm a bit surprised to read that your normal gyn is the one doing yours. 

Given your family's cancer history, has anyone ever suggested you see a geneticist? My gyn-onc. sent me to one and it turned out that I'm positive for Lynch Syndrome which is indicitive of higher risk for a number of cancers, but especially colorectal and endometrial cancers. Having that identified justifies more frequent screening to insurance companies and could help better protect you from finding a new cancer at a later stage. Here's a website you can check out for more information: genefacts.org Click on the link for condition specific fact sheets.

 

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

MAbound, nope. My Gyn/Onc told me that she didn't have the time to keep me with her as I was so low on the cancer scale and told me to see my normal Gyno from here on out.

EZLiving66's picture
EZLiving66
Posts: 1471
Joined: Oct 2015

I don't blame you for being nervous.  If I so much as sneeze, I figure the cancer is back.  I think it's just going to be like that the rest of my life no matter what my health actually is.  Better to get it checked out - if it's nothing, you'll have peace of mind and if it is something, they will have caught it early.

Please don't feel like you have to apologize - I personally LOVE to hear from people who haven't had a recurrence and are doing great.  It gives me hope.

Let us know what they find - we all care!

Love,

Eldri

janaes
Posts: 800
Joined: May 2016

Hi, I hope your colonascapy shows you dont have cancer.  I am glad you are getting it checked out though. 

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Please post whenever you want. No problem is too small. I hope the colonoscopy turns out well. Cancer is cancer, so we all understand your feelings and worry. Keep us posted. Prayers!

m

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

No such thing.  As others have said, no apologies needed here.  As far as your checkups, I alternate between my gyn/onc and my regular ob/gyn every 3 months.  I do agree that you may want to ask your doctor about being tested for Lynch syndrome.  My parents had cancer on both sides of the family tree, and my doctor ordered the test for Lynch syndrome.  I tested negative, which was some relief.

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

I have tried to ask my gyno/onc 3 times to be tested and never get a reply so I just stopped asking. Even when face to face with her, she would just keep talking so I don't think she even heard me sadly.

ARIELKY's picture
ARIELKY
Posts: 5
Joined: Dec 2016

Have you considered changing your gynecologist? I would want someone more concerned about my health and welfare. I just asked for a different chemo nurse because she walked out on me an hour before I was done with chemo. I could hear the staff discussing her absence... she didn't tell anyone that she was leaving, so nobody knew when she'd return. I heard someone saying, "She has two patients still getting chemo." I felt abandoned and alone, but went back to sleep, and someone else took care of me at the end. I heard another chemo nurse talking to the woman next to me in a loving, caring voice, and I wanted that for myself.

 

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

So here is the TLDR of my day of the 14th.  Arrived 20 min ahead of time. They get me in 20 min after 11 (my appointment time) Takes them 1 1/2 hours to get an IV in me. I'm told multiple times that I woun't remember it and or feel it. I get into the room, nurse gives me the drugs... says it takes a couple mins to take effect. So I wait, and I wait. Suddenly out of no where the doctor shoves the device up inside (i'm still wide awake) It didn't hurt at first then suddenly the pain started (probably due to the air they have to blow in) I'm almost crying, telling them how much it hurts. Doctor doesn't reply... nurse just says we are almost done. (Doctor continues to talk about his bad day with the nurses and where he wants to vacation next) 5 min later we are done and I'm wheeled out.

 

Needless to say, I was so angry.. and violated that I couldn't even talk. I simply asked the only nurse who just looked at me like "I'm so sorry" to get the IV out of me and leave so I could get dressed. I then walked out, refusing the wheel chair. Which they all looked at me like... uh oh... and then went to my car to have my husband take me home. literally 15 min, 10 for procedure and 5 to get dressed and out of there.

 

Oh, and apparently I'm clean as a whistle, everything looks great. Didn't even see hemroids, yet mentioned it was probably hemroids that was making me bleed 1-2 times a month. (how that even makes sense is beyond me.. I must have hemroids that took after houdini because they just magically dissapear)

And I'm sorry for how angry this sounds. I just... it left me UN-trusting of doctors even more today. I think I'll just forgo any more testing, because all a doctor sees when they look at me is my weight anyway. Which ya.. I was told he gave me all the sedation he felt ok with due to my (Weight, PTSD, and past sexual abuse) I don't know what world he comes from that less means a better experience but then again I'm not the doctor.

EZLiving66's picture
EZLiving66
Posts: 1471
Joined: Oct 2015

I am so sorry, but yes, I totally understand how terribly we're sometimes treated by the medical community.  When I had my port out, I told my doctor the site was not frozen and he cut into it anyway.  I screamed and he acted angry.  He left and a nurse came in and tried to use something different to freeze it.  He came back again and cut and I could still feel it - he said it was just "pressure" and there was nothing he could do about it.  Damn him - I could FEEL him cutting into me.  

We are treated like a piece of meat, but we are at their mercy!

I'm so sorry this happened to you!!

Love,

Eldri

ARIELKY's picture
ARIELKY
Posts: 5
Joined: Dec 2016

That's great news that you don't have cancer, but what an ordeal. That doctor deserves to suffer similarly. I would like to suggest another possibility for the hemorrhoids, please excuse my lack of delicacy. I sometimes have huge shits that cause me to stretch and bleed... and it usually just heals itself quickly. Even when I have had hemorrhoids, it's always been temporary, a little itching and discomfort, but they are usually gone within a week.

 

Dsr
Posts: 19
Joined: Dec 2016

I am so sorry for your experience compounding your already nervous state.  I have had to have multiple colonoscopies due to an aggresive polyp found years ago and I am telling you that is NOT THE WAY THAT PROCEDURE SHOULD GO. I'm sure it's not high on your priority list, but I would be filing a complaint with the state about this doctor so he can't do this to anyone else. (It also sounds like you may need a new on) Glad your colonoscopy was clear.  Keeping fingers crossed that you continue to have good reports from your doctors.  

ConnieSW
Posts: 1547
Joined: Jun 2012

i agree you should file a complaint.  No one else should go through what you did.  Grrrr!  I am so upset for you that words fail me.  The only ones that I can come up with at the moment would get me thrown off the site!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

No doctor should get away unscathed treating patients like this.  If we don't complain about the treatment we receive, doctors like this will continue to behave this way.  I am so, so sorry this was your experience.  I'd be furious, too!  I'm with Connie...  bad words are coming out of my mouth!

Nellasing
Posts: 529
Joined: Oct 2016

There is NO EXCUSE for that kind of treatment!  I don't understand where the compassion and kindness has gone.... their oath is 1st do no harm!!!  So many people don't go to the Dr because they have been harmed either physically or emotionally by them.  If they are so jaded then perhaps it is time for them to get into a new profession.

I am hopping up and down mad for you and with you and the others and I do believe that it merrits a phone call or visit with someone who can investigate and fix the problem.  

I wouldn't let this stop you from finding out what is going on if you continue to bleed- especially with your history.  I would perhaps ask for a woman Dr. in the future and make sure they know you've had trauma in your past??? 

Sending you healing (((HUGS))) and prayers for peace that passes understanding as this upset isn't good for you.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Agreed and if you don't want to file a formal complaint, there are plenty of places online to review doctors. Be honest with your experience because you may be saving someone who is not as strong as you from going through the same thing. I am so very sorry that you had to endure that jerk but please don't stop trying to determine what is causing the bleeding. That jerk is not worth you giving up on good health.

Tichondria's picture
Tichondria
Posts: 39
Joined: Mar 2016

Thank you everyone for your kind words. I have decided I will follow up with a complaint to the state board. I didn't even know we could do something like that. If I could have gotten up off that bed while they were doing all of this I would of. But with that horrible thing up there I didn't want to risk injuring myself. But honestly thank you ladies for the kind words. I really needed to hear them, so much so that it made me cry and feel so much better. So thank you!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

No one should be that way.  At the very least you need to report this.  It may save someone else from having to undergo the some negligence. I hope after all of that at least you,get a good report. 

i don't think there is any minor cancer except to someone who is not dealing with it.  Also, this is the place to come with anything, so don't be afraid or apologetic for anything you need to ask or say. We have discussed some real "interesting" subjects. I lost my modesty when I was given my ticket for this rollercoaster ride and I think,everyone,else probably did, too.

Hugs and prayers, Lou Ann

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1749
Joined: Jun 2015

I agree with all of the input. And, I'm so sorry you had to go through that!

LouAnn - you could not have said it better. Between the surgery, 3 month check ups and brachy.... who has any modesty left?! Not to mention the discussions on sexual activity, pain 'down there' and damage to our tissue inside. Oh well, a small price to pay to live.

Tich, I hope you get the answers you need and figure out what is causing the bleeding. I'm glad to see you posting and hope you come back soon and let us know how you are doing.

Love and Hugs,

Cindi

cindy0519
Posts: 173
Joined: Nov 2015

Tichondria - So sorry you had such a horrible experience with the colonscopy procedure.  I just had one done myself a couple weeks ago and you are correct GoLyte is the devil).  Just to assure you that you are correct in thinking this was not handled properly - I was given Fentanyl during my procedure and can vaguely recall them talking but never felt anything during the procedure itself.  I agree with others about reporting it.

The fear of any test is VERY real!  I have two cancers (breast Stage II and UPSC Stage IIIC1) that were diagnosed with four months of each other and I was a mess even thinking about the colonoscopy.  I'm glad I had it done because I did have two polyps removed (a 7mm sessiel serrated polyp) from the proximal traverse colon and a 14mm tublar adenoma with high grade grandular dysplasia).  Both are precanerous so it will be vital to have routine colonoscopies now to watch for regrowth and to hopefully prevent colon cancer being added to the mix.

As many others have said... NO cancer is a small cancer! Any single one can take your life if your not diligent and aware.  The fear helps to keep us diligent and more aware I think ;) 

Double Whammy's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

First, I'm happy it was all clear, but you did not have a normal experience and I'm happy you are reporting this.  This happened to one of my best friends who has had numerous colonoscopies because of a strong family history and she has had some polyps removed.  All had been well on previous colonoscopies  - until her last one.  The nurse had a bad time finding a vein (sound familiar?) and my friend could SEE that the IV was not dripping AND she was wide awake.  They did both an endoscopy which she had a hard time with and then came the colonoscopy.  She was NOT sedated, yet the doctor went ahead and tried to do the procedure.  Finally, she screamed enough that he did stop.  She filed a complaint with the medical group he works for.  She has no idea what happened to him or the nurse, but the complaint folks followed up with her via phone calls to assure her that it had been filed and was being looked into.  If these incidents are not reported, they will continue to happen and no one will even think there is a problem, they'll just think that some people tolerate the procedure better than others. I really don't think that's the case.   My experience (other than the dreaded prep) is I remember nothing, I felt nothing, and on and on.  Your experience was NOT normal. 

Suzanne

Double Whammy's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

I, too, had low grade, early stage endo cancer (the garden variety kind).  I was followed for 5 years by my gynecologic oncologist who really did nothing other than chat and perform a pelvic exam.  I felt very safe with him overseeing me.  For about a year, the gyn/oncology service was short staffed and he had me examined by his nurse practitioner and I was perfectly fine with that because I knew sort of that he was overseeing everything.  At that time, the group was still doing Pap smears but toward the end of my 5 years, they stopped doing them altogether - just exams.  Over time, he recruited more physicians and he was back seeing me through to the end of 5 years.  I do know of others with our type of cancer who have been referred back to regular gynecologists.  I do think that they are busy with women who have other gyn cancers and who really need their expertise.  I think he may have continued to follow me because I also had breast cancer and maybe something somewhere was off with me, but I don't know.  I also had a rather large tumor that had invaded less than half, but close to half of my uterine wall, and maybe he just wanted to be sure I did ok.  Because of that he removed lymph nodes which were clear, but who knows what was going on in the back of his mind?    I think as long as you have a gynecologist you are comfortable with and trust and who knows what to look for and/or feel and one who will refer you back should any problem be seen on the exam, it's ok for Stage 1, Grade 1 cancers like mine and  it sounds like yours is similar.  But you should be able to have that conversation with your gynoncologist and you should both feel ok about it.  It's very easy for me to say this in hindsight now that it's been 6 1/2 years!  Good luck and I hope you can find your comfort zone with all of this.

Suzanne

txtrisha55's picture
txtrisha55
Posts: 690
Joined: Apr 2011

Do not feel bad for venting, we all have done and you are entitled to your feelings.  No one on this site will ever fault you for feeling the way you do.  We are all here to lift each other up and support each other.  Some ladies are on the site more than others but every time I come here after being a way for awhile the feeling of support and love from the ladies is still here.  I agree about that crap they make you drink it is really bad.  My colonoscopy was 5 years ago and was clean.  Funny just 5 months later I was found to have uterine cancer.  No one even if overweight should be made to feel this way.  I am overweight myself and my colonoscopy was done with care adn lots of meds as I did not feel anything and was semi asleep could not even hear them talking which is problaby a good thing.  You should file the complaint against the doctor and the place that did the procedure.  I have a friend I work with that was found to have stage 1 overian cancer.  She had 3 chemo treatments but had an allergic reaction to Taxol and they stopped at 3.  That was 5 years ago and she is doing fine.  So sometimes no treatment is ok.  If you feel that you need to, get all your reports and go to another gyn onc for a second opioion.  

But remember this site, these ladies are here for you for support and understanding and help when needed. trish

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