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Symptom review and advice for next steps

Prayer Gal
Posts: 24
Joined: Nov 2017

Howdy all! I was recently on another site, and they seemed to provide zero feedback. Actually, they seemed to provide pat feedback, and it seemed that many in the "uterine cancer" forum were...absent? Missing? Non-participatory? I dunno. I have read through about 5 pages of stories, queries, information, and advice and feel that this group may actually engage a little and provide as much help as they can. Disclaimer: I am well aware that, unless you self-identify as a medical professional, you are not one, and are sharing from your own research and anecdotal evidence. That is precisely what I'm looking for :). 

So, my story follows-

I'm 45, have had 5 children via cesarian. I have had my tubes tied. I was diagnosed with PCOS when I was 32 or so. Sought out help from a reproductive endo and had a failed IUI. The next month I became pregnant with number 3. Number 4 was a "bonus."  I remarried, and had a final baby at age 41. He is now almost 4. About a year and a half ago, I began to notice two things: pains, and pink tinged CM. Now, since I'm a little overweight, and have had acne for a whopping 33 years due to the PCOS, all of my symptoms were written off for a variety of reasons. Backache? Oh, it was due to having 5 spinals/epidurals, or from my weight perhaps. Hip and pelvic pain nonestop? Oh, that was just from weight or carrying very large babies over the years. My age. My exercise routine....and initially I went to the dr as I couldn't take the pain anymore. Very unsuccessful visit. I went to the endo to see if maybe PCOS was causing issues. He essentially said I was lying about both my exercise routine (mostly running on the treadmill about 3x a week, a 5K each time), and my diet. I was tracking my intake via MyFitnessPal and was averaging 1500-2000 calories a day. And, at the time, I was drinking about 10 glasses of water a day. I'm still working on the intake, and have had an issue getting to the gym the past 4 weeks: partly due to family issues and partly  due to pain. 

My current symptoms include the following: hip pain that is all around through the back and into the front; pelvic pain-feels like a balance between gassy pain, PMS pain, just overall pain. Only, the past 2 weeks I have had pain in my groin where nodes are, only none are swollen. Now it's both the groin and top of legs. I'm also exhausted for no reason. The period pain is high, when normally I'm guessing it used to be average. And, I have more gushing. The reason why I made an appointment with the gyno is that I also had the pain AND about 5 days after the end of my last period, I had additional discharge that included LARGE dark brown clots, lots and lots of them, and that lasted well over 5 days. It finally dwindled down to small, tacky CM, but also brown, then light brown, then dark tinged CM. It scared me into thinking that there is more to what is going on with me other than "normal perimenopause" which has not been confirmed, FYI. 

I went to the new-to-me gyno in July because I hadn't had anything since my last child was born. I had a mammo, too. At that time-and still today-I had an achy and very itchy nipple. The doctor said two things that made me not want to see him again, even though I had researched him and he had very good reviews. One was that PCOS is an "ovulatory condition." What does he know??? It's WAY more than just that, which told me he was uninformed. Also, he simply said my itchy breast was due to dry skin....he prescribed me a hydrocortizone treatment that didn't do a thing.

I sought out a femaie GYNO who does many procedures in office by chance, and am looking for a second opinion. Why is my breast still itchy and getting worse? It has now moved to the other breast, too AND I have feelings of let down for no reason. I am certainly concerned about the bleeding, discharge, and pain. 

I don't need another pap. Mine was in July, and it was clear as was the mammo. My mammo was a 3D one, too. 

I think I should ask for a vag ultrasound and a D&C. 

Family history? Well, my grandma had a complete hysterectomy in 1962, but in those days i dont' know if that was just due to her bleeding through her sheets, or if they thought it was cancer or what. She never said, and she's gone. She also had a breast removed due to breast cancer when she was 81. Her parents both had some sort of cancer. My OTHER side I had an aunt who had lukemia diagnosed when she was 55. She died from it. 

Are these symptoms normal? Does this seem sketchy? It took me 3 years to piece together how the pain in various parts could very well be part of one issue. And, after about 2 weeks of research (which I teach, so I'm not attepmting to self-diagnose, just looking for answers) I feel that I may be on the right track. 

Any feedback would be appreciated. My appointment isn't until Dec 5. I did let them know I was in pain, and may be able to get in this week. 

Thanks!

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Ok as you mentioned no I, not a medical professional, but I feel your symptoms are worthy of further investigation. Pap smears will not usually diagnose uterine or ovarian cancer. My cancer wasn’t diagnosed until I was 63 after bleeding slight discharge and pain. But when I was going through menaupause I had some very heavy periods and clots. At the time I thought that was just part of the change but when I had my regular gyno appointment she told me if it happened again to call her and she would do a d and c. Of course it didn’t happen then again. That was in my 50s and Today I still wonder if that was the beginning of the cancer. Anyway I would push for a vaginal ultrasound at least and a d and c if possible. An endometrial biopsy could also be possible. I had no cancer in my family but you have, so I would emphasize that too. (I’m sure you have.) 

Hopefully others will chime in with their opinion. Please let us know how it goes .

Prayer Gal
Posts: 24
Joined: Nov 2017

Soup, thanks so much!

This is another new gyno since the first one seemed devoid of sympathy. I called explaining the situation, so this is a new gyno but under the umbrella of a "2nd opinion." 

My mom recently told me she had heavy clotting and had a D&C when she was in her...50's? She's now 71. I am guessing they did it to determine cancer. She said they said it wasn't cancer, but didn't elaborate on anything further. 

I would prefer to have a D&C over a biopsy to start, as many had said that biopsy can miss some cancer-and they could hurt. I'm not pain averse, but would rather just have the best option explored.

I do agree that a vag ultrasound can at least get the ball rolling with a look at the endimetrial lining...and I may be at the end of my period at that point, which is good! It should be less than 5mm at that point...I think. 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

Your symptoms are similar to mine (minus the breast part)

I think it is interesting what you said about execising and losing weight...I was exercising 5-7 days a week and burning around 3000 calories a day and not taking in nearly that many calories and I could not lose a pound. I went to the endo and she ran tests and toldme that while she truly believed there was something wrong with me it was not my thyroid or endocrine system. 

I had a full gyno exam in May of 2016 and a clear pap. My uterine cancer was diagnosed just before my 52nd birthday in Nov 2016. I went to my gyno because I was bleeding terribly and in a lot of pain and no energy...I felt horrible. On a whim she ran a CA125 and it turned out very very high so we did a vaginal U/S (it looked normal but enlarged uterus) and a CT (again just an enlarged uterus). It was through a D&C and hysteroscopy that she took biopsies and they turned out to be cancerous.

Find a doctor who will listen to you and run a CA125--it's not foolproof but a start. And get the vaginal U/S and hopefully a D&C to help with the bleeding and maybe give you some more answers...

good luck...

Prayer Gal
Posts: 24
Joined: Nov 2017

Thank you, ckdgedmom.

I have thought that the CA-125 is a great starting point. I also hope she does an in-office vag ultrasound. And, because of the insurance type I have, I'm almost certain I can request a D&C.....I want to start with the best option out of the gate so that we can figure it all out...not try something that won't be conclusive, then do another, then another.

I also have ramped up anxiety over the past 4 years. I'm CERTAIN (convinced?) it is hormone related. I mean, I had a panic attack on a flight once, and was in tears. I kept it together, didn't get kicked out or anything, but I thought I was going to die. Other things have caused similar responses. So, having a biopsy in the office probably won't work for me, KWIM?

 

pinky104
Posts: 574
Joined: Feb 2013

Did you breast feed any of your children?  My daughter had UTI's while pregnant the last time and was given antibiotics in her last trimester.  After the baby was born, he had difficulty feeding due to a tongue- tie.  She had terrible breast pain from his trying to feed with that.  He got that fixed before he went home from the hospital.  She stopped breast feeding him but kept pumping her milk, and the pain didn't go away for months.  In the meantime, the baby was found to have oral thrush.  She finally asked the doctor if the baby could've given it to her.  The doctor said it was quite possible and told her to rub Monistat on her breasts, but to make sure she cleaned it off before she pumped.  I would think the itchiness you have could be the result of a yeast infection like thrush, and be itchy just like a yeast infection vaginally would be.  It's a cheap fix to try.

 

Prayer Gal
Posts: 24
Joined: Nov 2017

Thanks for the input! So, yes I breastfed all of my children. That is how I know I have that let down feeling from time to time :). I woke up this morning to tingling in my nipple. The one that hurts the most is the right one. I say hurt, it's more I feel so many sensations. Prior to these sensations, I literally felt NOTHING unless they were stimulated, and that is how it should be! I KNOW something is wrong with them, but I guess I'm going ot have to put that on the back burner until the utermine issue is figured out.

I don't think the new GYN knows how much hope I'm putting into my visit with her! LOL....but in all sencerity, thank you so much for the ideas! I may just try the Monestat, if for nothing else than the itchiness!

I may be losing my mind but I could swear that the right breast-with the most sensations-has an old bruise look above the nipple now, since that is where I scratch the most! Eeeek!

I may sound extremist, but at this point: pull out the ute, take the ta-tas, I just want the pain to end. Hopefully I'm overthinking all of this and it's a simple concern. I pray I'm right.

MAbound
Posts: 877
Joined: Jun 2016

Before you go the extremist route of prophylactic hysterectomy and/or mastectomy please consider genetic testing and counseling. It would carry more weight with any doctor you would propose this to if you actually have gene mutations that put you at risk for these cancers along with the other risk factors you already have. I'd be surprised if you have active cancer now, but you could be heading in the direction of the hormonally driven version of uterine cancer and there are things that you can do to fend off that fate off besides surgery. Our lady parts are an important part of what holds everything in place down there and there are cardiovascular and orthopedic concerns with premature menopause, so you really want to be sure a need exists before you go the extreme route.

Here are all of the risk factors for developing hormone-based uterine cancer (endometrial adenocarcinoma) that I'm aware of:

1) Things that raise the body's long term exposure to excess estrogen:

     a.) onset of periods before age 12;

     b.) late menopause (55-60);

     c.) never pregnant;

     d.) never on birth control (you need to be on the pill for at least 2 years to get a protective benefit from it which lasts for about 10 years after you stop it);

     e.) obesity (fat cells make their own un-needed estrogen)

     f.) history of being treated for breast or ovarian cancer (especially if Tamoxifan was prescribed)

     g.) PCOS and/or diabetes (both cause increased acid levels in the body which stimulate cell mutations if not controlled adequately)

2.) Lynch Syndrome: an inherited set of genetic mutations that make one more vulnerable to a number of cancers, but especially uterine and colon cancers. It can only be detected by genetic testing.

3.) Age: risk for uterine cancer increases as menopause nears.

4.) History of endometrial hyperplasia

5.) History of pelvic radiation for another cancer

6.) High fat diet & lack of regular excercise.

Some things we have no control over, but just by being aware and alert to this cancer you are a step ahead of where a lot of us were when we were diagnosed. Use that to your benefit to keep learning and work on the things that you can control to prevent this disease. Especially try to adjust your diet to an anti-cancer/anti-estrogen diet that eliminates processed foods and incorporates organic to the extent possible. (A lot of pesticides are endocrine disruptors and not as innocuous as Monsanto would have us believe.)

There's a lot of information in books and on the Internet to help learn an anti-cancer diet. There are many different kinds of diets out there, but you will find a lot of overlap between them. The Mayo Clinic and other reputable sources strongly recommend a Mediterranean diet and that would be a good place to start. It will be good for your family as well as for yourself. It takes more effort to do this and we all realize it's not easy to do when you are still raising kids, but it will be worth any effort you put into. It's a learning process that takes time, so don't beat yourself up when you fail, but never stop working at it. Eventually it will become your new norm and you will be passing on good habits to your kids.

Do they have you checking your blood sugars daily because of your PCOS? Even if you are not on blood sugar controlling meds yet, this would be a good thing to be doing because it's really important to have your PCOS under good control, especially the metabolic component because it's such a major risk factor for this cancer. Always schedule those annual check-ups with your endocrinologist even when things are going ok. This is an important risk factor to stay on top of!

Hope some of this helps as you go through the process of finding out what is going on with your body. You are very smart to listen to it when it's talking to you like it is.

MeinMississippi
Posts: 39
Joined: Aug 2017

I think a D&C is probably the way to go. I had a normal ultrasound and a normal CA-125. My cancer was found during the D&C. I was surprised that the ultrasound picked nothing up. I had a very thickened uterus and multiple polyps. I thought the heavy bleeding and clotting I had was due to pre- menopause. A few months prior to my diagnosis I was having abdominal pain. I had three ultrasounds in the ER and they kept telling me it was an ovarian cyst that was causing the pain. I finally broke down and went to gynecology. I was told I had PCOS and given a Depo-Provera shot.  Honestly the only reason I went back to see the gynecologist was because  ten days after the shot I got the worst period of my life.  I couldn't even leave the house. I knew that shouldn't be happening on birth control  He suggested a hysterectomy, but I said let's do the D&C first and it that doesn't work I'll consider the hysterectomy. It's probably good I went that route because I was sent to gynecologic oncology to address the cancer. I had the robotic hysterectomy and let me tell you it was the best decision I ever made. I don't know why I was holding on to keeping my uterus, ovaries, etc because my husband had had a vasectomy 20 years ago shortly after the birth of our second child. After surgery I was up and walking well the next day, and ready to go the next week. I had been having trouble with ovarian cysts for the longest time and was having periods with large clots for quite some time as well. Looking back I probably could have avoided cancer had I just gone through with the total hysterectomy. I hope everything goes well for you. Good luck!!

MAbound
Posts: 877
Joined: Jun 2016

I was mostly responding to the "pull out the ute, take the ta-tas" comment, but agree that getting to the bottom of what's going on with herself right now is really important and a D & C would be very informative. Should no cancer be found, she can still use what's she's learned here to be proactive about reducing her future risk. Wish I had known this stuff before I was diagnosed.

MeinMississippi
Posts: 39
Joined: Aug 2017

I totally agree with you too on not having prophylactic surgery..especially taking out the lady parts. My mother had everything collapse down there about ten years after her hysterectomy. She had to have a bladder sling and other procedures done and it almost killed her. She also had breast cancer and had to have a right mastectomy. Even with me knowing this and having endometrial cancer there's no way I'd do a prophylactic mastectomy. However, with all the problems I had with my ovaries and then as I got into my 40's having the heavy bleeding, I kind of wish I'd of had the hysterectomy. I also wish I would've known now what I didn't know then, but, you know, hindsight is 20/20 as they say. I find your posts to be very helpful and informative, and Im glad you're here to help us! 

Prayer Gal
Posts: 24
Joined: Nov 2017

You all have been great. If anyone else has any experiences they would like to share, that would be so helpful. Comparing stories helps in at least two ways: determining if what you're experiencing is similar to others (somewhat along the lines that "there is safety in numbers"), and seeing if there is any validity to what is being shared on medical websites :). 

Honestly, I think that for some conditions there is a safety measure in place wherein each shares similar information, and that way they cover themselves. It's studies and journals that are most informative, with the details and "fine print" information being so helpful. 

In regards to the markers or higher propensity of cancer for women, I don't hit some of the markers, but have read them in multiple locations online. So, I have struggled with obesity (for the record, that would be the "medical definition" as I do run/jog on the treadmill often, getting up my heart rate, and do resistance exercises). I eat a keto diet because it is the ONLY diet that helps me at least maintain, if not lose, weight. This is vital because women with PCOS struggle so much with weight and almost no other factors are considered regarding a woman's overall health if they have both PCOS and obesity. None. I can have good blood pressure and great exercise, and because of the obesity the same lectures are doled out from doctors like you don't even try. It's incredibily insulting to my efforts.

I had normal onset of mensus about the age of 12/13. I don't know if I'm in preimenopause yet. 

There was one other point somone brought up and I forgot what it was, but I wanted to address it. If I remember it I'll return to post. In the meantime, I'm waiting for the 5th. 

-PG

MAbound
Posts: 877
Joined: Jun 2016

I think I may have touched on a sore spot and that was very clumsy of me. I want to apologize for that. We usually say that this forum is a no apology zone, but I think this may be an exception to that rule. 

My daughter was recently diagnosed with PCOS and is very physically fit too, but is short and has a very stubborn spare tire around her waist that frustrates her efforts to no end. PCOS is a very tough risk factor to deal with.

On top of that, she had early onset menses and I was diagnosed during treatment with Lynch Syndrome which means she may have that working against her, too. But at least she knows now that she and her doctors need to watch her closely for this and colon cancer as time goes on. Prophylactic surgery may be something she will have to consider as she gets closer to menopause herself, so I took your off-the-cuff comment about it rather seriously.

I knew nothing about this cancer when I was diagnosed at age 59. My doctor, if she had any concerns when menopause just wasn't happening for me, kept them to herself. I tend to get up on my soapbox when it comes to sharing risk factors for this cancer because there is no screening test for it and because our primary doctors are not discussing it with us like they are supposed to do as we approach menopause. Knowledge is power when it comes to fending off or battling this beast and we try to share what we know to empower each other. I overstepped the bounds of what you needed to know, but in my defense I'm still getting to know you.

I'm really crossing my fingers, eyes, and toes for you that your symptoms to turn out to be easily dealt with. Even though most of us on this board never manage to meet in person, it's amazing how emotionally invested and connected with each other's well-being we are. Never doubt, even if we might sometimes say the wrong things, that we don't care about what you are going through. 

 

Prayer Gal
Posts: 24
Joined: Nov 2017

Aww. No need to apologize. I wasn't offended at all! I'm thrilled that this group ACTUALLY engages someone, even if they are not officially (or, hopefully for anyone, ever) diagnosed. Like you said, I may say a few things that hit a soft spot for another. It happens in any online environment :). 

I teach online for a living, so that's a HUGE piece about me right there. You should know i teach research and writing. This is important as I take research seriously. At this juncture, my annoyance is with medical "websites" being slim on facts-or at least slim on details.

The 5th cannot get her quick enough. I would rather have a ball in motion then staring at it from the other side of the glass as it were. I can't pretend I know what is going on, or self-diagnose because that's premature and a few other things ;). 

All I'm doing is trying to be proactive and engage with others who have been where I am. Some, unfortuantely, were blindsided by their diagnosis as they had zero symptoms. Others were searching for answers and were given more than they could bargain for. Myself? Meh....I try not to obsess, I DO try to research, read, engage with people like yourself, and most importantly, pray. I make no apologies for being a praying woman, thus my screen name! 

Not to be a soapbox-and there are only a few things I would be on one for (this is not one of them)-the Bible says that it "rains on the just and the unjust alike." It also says that sin abounds in the world. For some of us, we know this to mean that as believers we are not immune to maladies and other things that come against us. I don't see this as anything other than an anomoly to being a human. Some people have cancers in their families and never "get" it; others have zero and "get" it. So, again, there is no rhyme or reason from that perspective. Can we do anything to prevent? Sure. Can we change habits? Absolutely! But, I will never believe that any condition is a result of something i did/did not do. Obviously there are exceptions, such as smoking anyway and knowing I could get cancers....I hope someone reads this the same: YOU did not do anything to deserve or bring this on to yourself....

I'll be here as long as I need to. And, I will be sure to post any results, information, etc from my gyn visit.

Thanks so much for the good thoughts coming this way :). 

PG

Prayer Gal
Posts: 24
Joined: Nov 2017

I just want to get started with the doc.  I am in so much pain today. Hips, groin, pelvis, back. And, breast pain. It's a double whammy over here and the anxiety is starting to creep in.

 

Jairoldi's picture
Jairoldi
Posts: 215
Joined: May 2017

December 5th must feel so far away for you tonight. Waiting is never easy. 

Prayer Gal
Posts: 24
Joined: Nov 2017

yes Indeed. I was reviewing my archaic chart. Two years. Two years of initially strange things with my cycle

and increasingly worse things  and all along I’m over here thinking - well, really, making excuses for them all. It’s not

normal and I missed it. I don’t like going to the doc. I don’t like pain meds. I don’t trust people much. I’m my own best boss. This is so hard. 

Prayer Gal
Posts: 24
Joined: Nov 2017

So I've been deciding how to approach the appointment. I don't want a follow up pap smear. And, I haven't decided if I go in with both barrels loaded and tell her to give me 120 seconds and I'll share everything or if I just give her the short, 20 second version, and then wait for her to ask questions. Unfortunately, that is how I ended up missing so many things last time, that and the doctor was a jerk. He tried to "put me n my place" with his condescending comments. I could not get past his comment that PCOS is an "ovulatory" condition. Um, er, no. It affects EVERTHING with a woman. He said I should seriously consider stopping taking Metformin-a common prescription for women with PCOS.....it just honked me off. 

I am hoping that I can get at least something done tomorrow as this dr does offer in office VAG ultrasounds...and I hope she listens and is as concerned as I am. 

I went to Walmart this afternoon with my family for maybe 40 minutes. Came home and used the bathroom. Just sitting there my hips/pelvis/low back began to ache again...and now hasn't stopped. Why? Ugh...

I'll come back to let you all know how it goes.

Thanks again for all the support and info. This page is so supportive. The other page I was on literally says nothing. They want to treat you like an outsider until you have a diagnosis but in the meantime people like myself with serious concerns (and realy symtoms) are concerned beyond measure!!

Prayer Gal
Posts: 24
Joined: Nov 2017

Okay, it was a little strange. I'm sort of annoyed with the intake, then review of the same information with the doctor. Annoying.

Right, so:

Dr. did give me a referral to a breast specialist for the concerns/issues there. She said that he has all the appropriate equipment in office and I can leave knowing what I have going on. Ultrasounds and other items sound great! Should get in before the end of the year which is promising. She also gave me a singular pill for yeast, stating that it may be that I have a yeast infection inside that is causing the itchy nipple(s) from the underside. interesting.

She wants me to take Evening Primrose and Vitamin E. I don't know why. Oh, and suggested a probiotic (note the yeast theory above).

Then, she is doing blood work, mostly for hormones. Also good. Although I recently had my panel done with no issues.

Secondly, even though I literally/technically and STILL on my period, began Dec. 1, she wants me to come in after my next one, at the end of it, for a saline ultrasound or something? Checking for pallups and/or endimetriosis. Then, she wanted to do a biopsy too. During that appointment. 

I told her no. I would rather have a D&C. 

What are your thoughts? I have read here repeatedly: they don't always catch aything with a biopsy because it is blind; the biospy hurts alot.I just want to skip that step. I think a D&C is better.

Also, I think she does that in office, too. But if not, I think she does it. She does not take OB patients so that's convenient. However, I also wonder at what point I should expect a Gyn ONc to review or conduct a procedure. Any time? Or, have to wait?

If she finds a pallup, does that go to pathology automatically? Or, would she schedule another appointment to remove it? 

I have many questions. Maybe I shoud start another thread?

PG

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

You do not state what location you are at, but could I assume that it is Texas, this is from your opening of Howdy!  I had a D n C which everything was sent to Pathology, which determined that I have a tumor in my uterus and additional polyps.  The pathology stand that the tumor was stage 1A very low grade but it also stated I had two microscopic cancer cells in 1 lymph node, well that bumped it up to stage 3C cancer because it was somewhere else outside of the uterus.  I was post menopause for 7 years no bleeding then one day the flood gates opened while I was a work.  I freaked but within 3 days I was at my gyn dr. We scheduled a Dnc for 2 weeks away then another week waiting for the results.  Cancer.  The weekend passed and I had gyn onc dr appt on that Monday and had hysterectomy on Friday.  6 rounds of chemo from May to August.  Now 6 years later NED.  If you are in the DFW area of Texas and need a third opinion, I go to and went to UTSW hospital and Cancer Center.  If you need or want it let me know and I will share.  Great gyn dr and great gyn onc dr.  Hope you find the answers you are looking for. trish

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I had a D&C and a hysteroscopy because I had been bleeding 17 days straight in the middle of a birth control pill pack (which I was taking to regulate my period...go figure).

Once the pathology confirmed cancer I was then referred to my gynogological oncologist. I was lucky that she took me right away (the same week that pathology confirmed cancer) and I had my hysterectomy about 12 days later (after I had time to get off of all blood thinning meds and Thanksgiving in the middle of it). All my procedures prior to the hysterectomy were done by my regular gynocologist.

Do you know if she was running a CA125 with your bloodwork? 

Prayer Gal
Posts: 24
Joined: Nov 2017

I asked specifically about this and she said it could be a marker for many things, and isn't always accurate for cancer. Like it can be elevated for other conditions as well, so she seemed "not a fan." 

I will say I guess I'm satisfied that she is going to look at hormone levels.

As she put it: Let's do a workup.

What else can I expect?

The only part that bugs i waiting until right after the NEXT cycle to have the saline ultrasound or whatever she called it. I mean, I JUST ended or am AT the end of my period now! She only does these things on Thursdays, and wants me to wait untl my NEXT one????COME ON...like I'm in so much pain NOW.

 

Lord, give me patience here cuz just no! LOL

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

It's true it can indicate other things but in my case it is what led my doctor down the path to discover more in my case because it was elevated. My gyno oncologist monitors my levels with it (UPSC produces a protein that can be tracked with a CA125). I don't understand why so many doctors are so reluctant to run the test...it's less and invasive and although not perfect it is a screening.

I would not be happy having to wait another cycle either...especially when in pain...

SF73
Posts: 276
Joined: Oct 2017

Why is it that their assumption is CA125 will not be a marker for us uterine cancer patients. I so wish I had my CA125 numbers from before the surgery so that I would know what my baseline was. When I insisted on having CA125 prior to my first chemo session it turned out to be elevated. As  you say it is non-invasive and cheap. How could it hurt? Don't understand the resistance. 

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi,

Hope this is helpful...I had a rare form of uterine cancer 8 years ago (small cell undifferentiated carcinoma), and while the C125 was in the normal range, it was one of many tools to identify changes.  I still hold my breath each year and get the c125, which has been consistent.  If it changed rapidly, that would be helpful to know, and would initiate other tests, scans, etc.

My very best to you,

Susan

 

Prayer Gal
Posts: 24
Joined: Nov 2017

Well, the breast cancer page is almost dead. It's weird. However, my appointment with the breast oncologist is tomorow. Since I have been having issues for a year, the next natural step is to see a breast specialist to ensure that nothing is actually MORE wrong. As I stated above, I have had itchy breast issues, specificaly UNDER the nipple, and then further, I've had random sharp pains that literally shot through the middle of the breast which woke me up a few times. Also, my nodes in the armpit have hard to explain, but almost like radio pain-not painful to the touch, but seriously should not be "felt" at all...I had one about 3 months ago "all of a sudden" go hard in my armpit, which I feel could be related to my breast (if anything is going on at all). 

I really dislike going to the doctor, so to pursue this type of follow through is important. I don't want anything to get out of hand, if there "is" anything, nor do I want to die prematurely, again, "if" there is anything. 

I cannot imagine why, aside from perhaps a yeast infection, that I would have an under nipple excuciating itch. Ladies, I mean....fully on want to go to town itch, all. the.time. I have to exercise an extreme amount of self-control MOST of the time to avoid touching myself in public. 

Also, I had ALREADY changed to Dr. Bronner's soap, titanium razor blades, and reviewed my laundry soap. So, I am trying....

 

I guess I'll let you all know after tomorrow....

Prayer Gal
Posts: 24
Joined: Nov 2017

For anyone who is following along, I will post what I did in the BC forum: 

I may just need to continue to look into what may be going on with my nodes as well as pay attention to the itchy breast. I had full breast ultrasound on both, and aside from ducts that were dialated, there wasn't anything else wrong, but to return in 3 months. Hooray so far!

Now, I also got my results back from the GYN, and I am NOT perimenopausal, which makes my bleeding etc more concerning. I don't have any lactation hormones in my body. She was really thorough with the bloodwork.

Next appointment is not until January 4 for the vaginal view....until then I am sitll in alot of pain in my hips, groin, low back, and pelvis. Guh.

Mwikoff46
Posts: 40
Joined: Nov 2017

I'm right there with you..pain in groin hip lower back and right side up back...iv had 2 CT scans 1 abdominal US 2 transvagial US ..today just had 3rd and didn't like the way she made comments so im freaking out...and had .ca 125 bloodwork..all in 2 months ...I'm so afraid the scans are not catching what's going on ...I'm in so much pain....im nervous about today's scan..I went to hospital this time for the US instead of those independent radiology place. I just feel lost and like I havnt done enough ...

Mwikoff46
Posts: 40
Joined: Nov 2017

Also..is it normal to.spot after the transvagial US

Prayer Gal
Posts: 24
Joined: Nov 2017

So, I was to have the saline ultrasound today. The tech did a vag ultrasound and an ultrasound outside like if I were pregnant. Dr came in...she got started. Y'all it was so painful! AAAAAND...she couldn't do it. I have a titled uterus with scar tissue from 5 c-sections. She tried many methods and ultimately it was too painful and she wasn't in. Grabbing the cervix with a tool to get a speculum in?? NO...that hurt.

Here are my options: Do a DNC with biopsy and water ultrasound in her office where she sets up one of her rooms like an operating room once a month; go to the hospital and do the same for hospital fees. She said I'm a candidate because I don't have hypertension nor am I morbidly obese etc. I'm not a smoker...anyway, she brings in an anesthesiology team and they just do it like if you were in the hospital. What do you all think? I'm so nervous!

The ONLY think I learned was the lining of my uterus. I'm on day 4 of my cycle. It was 7.5

 

 

Northwoodsgirl
Posts: 552
Joined: Oct 2009

Prayergal, My recommendation is to have the procedure in the outpatient hospital setting. Rational: Bringing in a nurse Anesthetist or Anasthesiologist and setting up a surgical suite once a month doesn‘t sound like a quality oriented option. Sounds more like a way for the doctor to pull revenue into their practice for procedures they don’t perform very frequently. In health care quality measures it makes a difference in quality/ outcomes when there are greater numbers of procedures done with the same health care team more frequently. Opt for the hospital out patient option. Forget the once a month in the office option!

Prayer Gal
Posts: 24
Joined: Nov 2017

North, I would agree with you. However, I hear: She brings in an anesthesiology team each month, but they are the same as are the other people who assist....and by doing the procedure inside an outpatient setting the things that are different include the people who are doing anesthesiology PLUS any of the support personnel. 

She does it once a month in her office, yes, but also does many each time. If her number of 11 last time is an average, she does approximately 120 surgeries a year....but, if I do have her do an outpatient facility (what I was hoping for, honestly), I would then have to pay her, the ansthesiology team, the hospital (not part of the prcoedure pay at this point), and anything else that is charged external to the specialized procedure. 

I'm with you, yes. Totally. 

Do I want to pay for the additional element? Like, what will be different other than the location? I am not sure anything. I will have an IV with antibiotics, I will be in conscious sedation, she will be doing the procedure like she would in a hospital. 

Maybe it's just the money? And, I guess, if I begin bleeding out, she can have access to what, other specialists, maybe? LOL...she said she has double doors at the end of the hallway for an ambulance should I need one...that was both comforting and frightening...but she did say that any potential isues are the same in her office as in a hospital. 

Still, it's something I need to consider.

One question that comes to mind is: what hospital does she have privileges at? 

Second question: how often can she schedule procedures there? 

She still delivers babies so I know she goes to a local hospital.

CheeseQueen57's picture
CheeseQueen57
Posts: 816
Joined: Feb 2016

i would suggest the hospital. Remember Joan Rivers!

Prayer Gal
Posts: 24
Joined: Nov 2017

What happned to Joan Rivers? I thought she died on the table from too many plastic surgery procedures

 

CheeseQueen57's picture
CheeseQueen57
Posts: 816
Joined: Feb 2016

On August 28, 2014, Rivers experienced serious complications and stopped breathing while undergoing what was scheduled as a minor throat procedure at an outpatient clinic in Yorkville, Manhattan.[114][115] Resuscitated an hour later, Rivers was transferred to the hospital and later put on life support.[116] She died on September 4 at Mount Sinai Hospital in New York, having never awoken from a medically induced coma.[117] The New York City Medical Examiner's Office said she died from brain damage caused by a lack of oxygen, and the details of her surgery would be investigated by officials.[118] Rivers was 81 years old.

After nearly two months of investigations, federal officials said on November 10 that the clinic made a number of mistakes both before and during the procedure. Among those were the clinic's failure to respond to Rivers' deteriorating vital signs, including a severe drop in her blood pressure, possibly administering an incorrect anesthetic dosage, performing a surgical procedure without her consent, and other medical-clinic irregularities.[119][120]

Prayer Gal
Posts: 24
Joined: Nov 2017

Something else she said: She said she can't do an ablation until she does a biopsy. She would biopsy when she does the D&C....that is something I would like done in a hospital.

Now, I've read that some people have a DC and have to wait to see an oncologist. Is that because the DC provided a preliminary cancer DX OR...was that part of the protocol?

She just mentioned the ablation as an example, not that I need one or will need one; she won't know until she gets in there I guess....

 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

My gynocologist did my D&C and biopsies in her office.

A surgical team brings in the equipment and an anesthesiologist was there to sedate me. I was lightly sedated but no breathing tube needed (like getting wisdom teeth removed) and I have no memory of the procedure and I felt no pain. I woke up and walked back to an exam room to get dressed and recover (although there was little to no recovery as I was not put under just given medication to make me comfortable). I had an iv and do remember him telling me he was giving me the meds and I remember Cathy (my gyno---we are friends, yes that is weird but it works for us...) coming in and telling me she was going to get to the bottom of things. That's all i remember until she said "hey sweetie we are done". 

it was much easier than dealing with the hospital and my insurance covered it. If I was going to be put under and a breathing tube in then yes you def want the hospital but for a procedure like a d&C and biopsy they are fewer risks...

do what makes you feel comfortable...talk to her more about it if you have concerns...

as for diagnosis---she told me after the procedure that she thought some things looked suspicious. My pap in May 2016 had been clear and this was Nov 4, 2016. The pathologist had trouble making a definitive diagnosis in my case...it was almost 2 weeks before we got an answer. My cancer was in my uterus, one tube, one ovary, cervix and a bit of the vagina. The minute my gyno heard from the pathologist she contacted the gyno oncologist on my behalf. (I was scheduled for a regular hysterectomy but she cancelled it and referred me). I got lucky that the gyno oncologist is good friends with my gyno's hubby (who is also a friend and gyno/OB) and she took me on as her patient on her first clinic day that week---so I only had to wait 4 days and I knew at that point I had cancer. I know some people have to wait longer and I am very blessed that I live in a large city with 3 excellent cancer centers and that my gyno oncologist was willing to work me in because she was interested in my case and Paul (my gyno's hubby) begged her to see me ASAP because he wanted me taken care of. 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

While I did have an internal ultra sound, I didn’t have an endometrial biopsy. My biopsy was done at an outpatient facility, a d and c. It is a very well known facility in my city and is well equipped with anestefiaologist, nurses, etc. I had no problems there and there was cost savings. Yes the d and c gave the diagnosis and I was then referred to a gynechological oncologist.

Prayer Gal
Posts: 24
Joined: Nov 2017

Soup, that is what I think, too. One nurse friend said that in office surgical suites aren't regulated the same, don't have a crash cart, etc. Another told me that it is routine and should be fine, no sweat. I'm not a worrier per say, but I am a pessimist. More than that, I have tremendous scar tissue from 5 cesareans. I cannot imagine it being "routine" to get past/beyond/around the scar tissue, you know? 

After talking with my husband (who lost his first wife to health issues) and speaking to my nurse friends, I think I'm going to opt for the safest route and go to a hospital or surgical suite. I seriously don't see this as routine FOR ME. Now, I have thought that maybe all my inter-cycle bleeding and clotting is due to the scar tissue. She actually said, "if it can come out, then I can get in"...okay, that's fair, however.....what if the scar tissue is breaking off in clumps? That could happen, right? But then, what if it's not. 

I guess I want the best possible scenario to have the best possible outcome. ANd if she (or whomever) scopes my uterus and there is nothing there...then FANTASTIC...but the pains, associated symptoms, and type of cycles and intermittant symptoms I've had seem to point to something abnormal: even if just endometriosis or polyps, it's still not normal. 

So, I'm with you! Having the biopsy and D&C in the best setting will make me more comfortable and at ease. 

On another note: I read on her website that all surgical procedures need to be paid for upfront during pre-op. What?? I've never had that. Ever. We have amazing insurance and it covers quite a bit. Even still, we do have to pay a percentage or portion of most all procedures. So....I would rather work with a hospital and care providers individually kwim?

Thanks for the input!

I really value this group and their opinions/experience. I like reading your personal stories,which gives me hope and insight.

Prayer Gal

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Keep us posted and let us know how everything goes. Prayers for good results!

Northwoodsgirl
Posts: 552
Joined: Oct 2009

Glad to hear you have made an informed decision on the best place for you to undergo the procedures. Each of us have our own values and preferences and fears. Please do keep us posted on how it goes for you! 

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