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A Major Vent!

CheeseQueen57's picture
CheeseQueen57
Posts: 920
Joined: Feb 2016

So, I went to my regular 6 month visit with my gyn/onc today. I really like this woman and she did a great job with my surgery. However, I'm a little concerned with what happened today. She had her fellow and a medical student with her and actually the fellow did my exam. We talked about my problem with ongoing urinary tract burning and the suggested the Estring. I asked about the risks of a vaginal estrogen and they assured me it was fine. However when I got home and did a little research I found this:

"Do not use ESTRING if you have unusual vaginal bleeding, have or have had cancer of the breast or uterus, had a stroke or heart attack, have or have had blood clots or liver problems, have a bleeding disorder, are allergic to any of its ingredients, or think you may be pregnant.

Estrogens increase the risk of gallbladder disease. Discontinue estrogen if loss of vision, pancreatitis, or liver problems occur. If you take thyroid medication, consult your healthcare provider, as use of estrogens may change the amount needed."

Now those of you that know me know that I also had a stroke during treatment. The warning also said that the drug interacts with blood thinners (I'm on Coumadin) and may cause vision problems (my vision is finally almost back to normal after 9 months of optic nerve swelling)!  What the hell!  Thank God I've got a fabulous PCP that always checks all this out, but if I hadn't checked this out I could have had some real problems. I don't take anything without checking it out first. Why do they even keep a medication and problem list???? Thanks for listening to my rant!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1645
Joined: Jun 2015

Cheese, I'm sure glad you checked this out yourself! Geesh... Like you, I don't use anything without doing the research myself. We do have to be our own best advocates! Even though you like this doctor, you may want to consider going to someone else or at least challenge her on this medication recommendation.

I hope you are drinking a lot of water. It seems like your burning should have gotten better by now. I did ask my NP last week about bladder infections and she said that we do tend to get them easier post radiation...  So far I have been able to control them by drinking water daily... I just wonder if there is some natural product that you can use to ease your symptoms?

Love and Hugs,

Cindi

 

CheeseQueen57's picture
CheeseQueen57
Posts: 920
Joined: Feb 2016

Well I last saw gyn/onc in November. I saw rad/onc first of May (she also did a pelvic exam) and I'm scheduled to see oncologist in August. Next CT scan (6 month intervals) was supposed to be August but a little fluid seen on last one and the fact I'm having a little right lower flank pain and we moved CT scan up to June 14. Hopefully it's nothing. I'm going to try coconut oil for my issue. Anybody using it?

ConnieSW's picture
ConnieSW
Posts: 1471
Joined: Jun 2012

This is VERY upsetting. What will you do next?  I know you have your PCP to fall back on but these other folks shouldn't be let off the hook. 

Also, I'm surprised you went to 6 month checks so soon.  I know my doc seems overly cautious compared to what others are doing but I just graduated to 6 month checks after my last appointment, the 5 th anniversary of my surgery.  Before that, I had been going  every 4 months for 2 years.  Anyone know the standard?

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2736
Joined: Mar 2013

CheeseQueen - please rant away!  You are sharing important information.  

My oncologist or gyn onc (it all blurs now) said NO HORMORES as UPSC is 'fed" by hormones.  I am shocked that you were told "OK".  You have every right to be furious over this and you prove the point that you have to be your own advocate.  There is another drug advertised on TV that says those similar disclaimers.  

I do hope they can find something to help you - safely.

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Let me add my voice to the indignation. I mean, WTF? That was a bone-headed call on the doctor's part if ever I saw one. Yes, it's good to be our own advocates but aren't they supposed to know this better than we do?  And no, never used coconut oil but am curious as to whether it helps you. Please tell your doc she's a dolt, on all our behalf!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1645
Joined: Jun 2015

Hey, Great Picture! :-)

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

It's how I *used* to look, about 9 months ago. I think it's kind of false advertising to put it up now (rather than the picture of my mother) since I'm still hairless, but I wanted my friends to see who I really am. Thank you for noticing!

ConnieSW's picture
ConnieSW
Posts: 1471
Joined: Jun 2012

And I'm still super indignant!

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

Wow! So glad you did your research. I asked the PA at my last appointment whether I really needed to go to the regular gynecologist anymore and she said no that my gynecologist oncologist does all the same things.

MoeKay
Posts: 270
Joined: Feb 2004

I wouldn't be able to resist running the results of your research on Estring by your gyn-onc to see what she has to say. 

I'm 18 years post-treatment for endometrial cancer which included internal and external radiation.  I recently had symptoms that I suspected were a UTI (urgency, frequency, burning, etc.).  I tried clearning it up on my own by drinking extra water, because antibiotics, the usual treatment for UTIs, wreak havoc on my bowels due to my microscopic colitis.  I would show signs of improvement and then a few days later, the symptoms would return.  After about two weeks, I saw blood in the toilet on several occasions after I urinated.  That gets your attention quickly, and prompted me to call my urologist.  I went in for testing, but I didn't have a UTI at that time.  He did a cystoscopy which I watched and saw the radiation cystitis in my bladder.  I had a somewhat similar experience a little over three years ago and was told at that time that I had radiation cystitis.  Since the UTI (if I had one) had cleared and my symptoms had resolved by the time of my cystoscopy, I didn't need any treatment.  The radiation cystitis is always there, but I only have had problems involving bleeding twice.  Interestingly, both times I was sitting for a long time and not drinking as much as I usually do.  This most recent time, my husband and I had just returned from a train trip to Florida that took over 21 hours each way.  I suspect all that sitting and too little drinking (to avoid using the bathrooms on the train) may have done me in.  So my advice is:  DRINK LOTS OF WATER!!!

My urologist suggested I might want to try cranberry supplements.  He provided me with samples and information on a product called TheraCran One by Theralogix Nutritional Science.  I took two of the sample pills, one each day, and I experienced somewhat of an increase in the symptoms of my microscopic colitis, so I stopped for the time being.  However, I'm going to try again, because it may have just been coincidental.  I did a quick search and found this Abstract of a study relating to men with radiation cystitis and cranberry supplements.  https://www.ncbi.nlm.nih.gov/pubmed/24993395.  The study reported a decrease in symptoms in individuals who took the cranberry supplements.  Most of what I've seen on cranberry supplements relates to prevention of UTIs and not radiation cystitis.  You might want to see what your radiation oncologist or urologist have to say about cranberry supplements in your case. 

Good luck, CQ, and let us know how you make out!

 

CheeseQueen57's picture
CheeseQueen57
Posts: 920
Joined: Feb 2016

Thanks for all the recommendations and feedback. My other concern is that for a while I've had this dull, aching pain in my right lower abdominal area. It almost feels like the pain I had before I had my surgery but everything was removed. The gyn/onc didn't pay much attention to it yesterday but I am scheduled for CT scan on 6/14. I'm just starting to feel normal again so I just can't bear the thought that this would be something major. I'm hoping it has something to do with the sacral fracture but I doubt it. The last CT scan in February showed a little fluid in this area. Anybody have anything similar to this. Trying not to freak out and don't want to tell a lot of family and friends to get them all worried needlessly. My son already was concerned when I told him I was moving CT scan date up.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1645
Joined: Jun 2015

I have had pain in that same area. It sure does cause concern. I went in for my check-up last week. They were not concerned about the pain. Mine comes and goes. She told me it could be scar tissue and that it is not uncommon to have pains while our bodies are adjusting to the missing body parts. Couple that with a rise in the CA125, but still in the normal range and off to the dark side our minds may go! I asked about getting a CT scan and she said they don't recommend them unless there are more symptoms. So, I put this in the back of my mind and am getting on with my happy life.  My sister told me she still gets pains like this and she had her surgery 4 years ago...

Hopefully yours is just the normal stuff CQ. Please come back and let us know.

Love and Hugs,

Cindi

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Cindi, It's reassuring to hear what you were told about the pains, etc. My CA-125 went from 7 to 11 last month--still low, but I think I'm going to ask to have the test done at my next port flush rather than waiting two more months.

I'm glad you're getting on with your happy life! Way to go! It really is the only thing to do, isn't it?

Best,

Rebecca

 

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Good catch, CQ!

I think I'm going through some similar things (at 5 months post-chemo). On my CT scan two months ago, the radiologist noted fluid or fat stranding (I still can't quite make sense of that phrase) in the presacral space. My gyn-onc said that could still be inflammation from surgery a year ago, so she wasn't worried. I've also been having little pains that I think of as lymph node pain--in several different places but especially in the lower right abdomen. As you say, though, I'm just starting to feel seminormal again and not ready to face a new round of tests and doctor's appointments. Post-treatment life is more complicated than I expected.

I hope you get some answers soon. Best wishes.

MoeKay
Posts: 270
Joined: Feb 2004

I pulled out the report from my first CT after surgery.  It states "in the left lower quadrant adjacent to the iliac vessels and surgical clips, there are two small fluid collections . . .  It is likely that these represent lymphoceles . . .  The other less likely possibility is that these are enlarged nodes.  . . .   I would suggest this finding be followed. "  When I discussed this finding with my gyn-onc, he said it was likely that the fluid was due to the fact that I was still healing after surgery. 

I had another CT five months later because I was convinced I had bone mets to my lower spine due to pain that lasted several weeks.  They utilized bone window settings to evaluate the sacral region, and the findings were normal.  Of course I will never know, but looking back, I think I may have overdone things in an exercise class too soon after surgery and strained my back.  

I'm wondering if your pain might be due to scar tissue formation?  I hope the pain subsides soon and that your CT results are completely normal. 

CheeseQueen57's picture
CheeseQueen57
Posts: 920
Joined: Feb 2016

It's always good to know there are other possibilities other than the cancer causing the pain. Of course, our mind automatically jumps to that conclusion. Will keep praying for the alternative. 

Hma4's picture
Hma4
Posts: 38
Joined: Jan 2017

I was/am having pain in my back, my pcp ordered an MRI turned out to be a bulging disc and wants me to do theraphy- some days I feel like Im feeling worse and not better. I was doing great, my nueropathy is manageable, my feet bother me most at night, my fatigueness has increased, I am sleeping better, I just feel like in the last month i have aches and pains, my shoulder hurts (a lot) I also started getting small red dots all over my body ( cherry angiomas) , the labs my pcp did were all great except for my ESR which showed inflamation in the body, which is why I had an MRI done- bulging disc in my spine- does this ever go away? ( doctors, aches, pains, poking, prodding etc...

pinky104
Posts: 574
Joined: Feb 2013

I wonder if the burning might be something simple like a yeast infection causing some external irritation.  You might want to pick up some Monistat and try it.  For the abdominal pain, there is another possibility: an incisional hernia. Is the pain worse when you do heavy lifting?  Before my cancer was diagnosed originally, I used to get a little ping of pain on one side of my abdomen for just a second or so every day.  Looking back, I think it was caused by the mets to my ovaries, as both had to be removed.  Yet only one side hurt.  Odd! 

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Thank you Cheesequeen,

My gyn/onc said Estring was okay and I have liver problems. Have a new gyn/onc who knows I take it and who has not said anything--nor have the 2 primary care physicians who know I take it. Really!!! This "you have to be your own advocate" is really making me crazy. Why can't we expect our physicians to be our advocatse when "caring" for us?!!

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