Waiting for diagnosis...

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Laceygirl
Laceygirl Member Posts: 9

Hi Everyone.

My life has been recently turned upside down and I am honestly not really too sure which way is up these days. I found out last week that I have a 10 cm mass in my uterus that was discovered by an ultrasound I had done for constant urination and heavy periods/discharge. I am 41 years old and now that I look back I realize that these symptoms have been progressing for the last couple of years and I just never really paid attention to them. I am actually fairly lucky that I found out. I went to the doctor after having an extremely heavy menstrual period (to the point of hemorrhaging all over my bathroom) and only when she was going through my files she realized that no one had bothered to call me to inform me of the findings from the ultrasound I had done 2 months ago!  I thought no news was good news but I guess not? 

My doctor said that the report stated it was probably just a giant fibroid but her eyes said something different. I was told I needed and MRI and was referred to a gyno for further evaluation and surgery. Apparently, I need a hysterectomy irregardless of what it is. When I found out I would be waiting many months for the MRI I decided to pay for a private one.  The results were not what I expected:  

Enlarged, bulky uterus containing an 8.2 cm left intramural uterine fibroid displacing the endometrium.  The fibroid is mildly hypo-vascular, possibly secondary to degeneration.  The fibroid is new from a 2011 pelvic ultrasound.  Given the fairly rapid interval growth, an underlying uterine leiomyosarcoma is not definitively excluded, although hypovascularity would make this less likely.  Gynecology referral is recommended for further evaluation. and management.

Not really too sure what to make of all of this...I have recently developed a really bad bladder infection which is now slightly improving with antibiotics.  My abdomen is very tender and I feel like I have to pee all the time.  I am really scared here...

After the MRI results came in everything has been fast tracked.  My gyno appointment has been bumped up to March 28th from May 2nd.  Its like a whirlwind.  Can anyone help or offer a shared experience/words of advice?

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Comments

  • Jairoldi
    Jairoldi Member Posts: 221 Member
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    Thinking of you

    Lacygirl, waiting is so very hard. This is such a scary time during the process. It's common, usual, to be full of anxiety while waiting for a definitive diagnosis and a plan for treatment. We will all be right here to help you process and answer questions based on our experiences. Many of us, myself included, sought help from a counselor or therapist to help us think things through. Other ladies will be along soon to encourage you.

  • zsazsa1
    zsazsa1 Member Posts: 565 Member
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    From what you describe, I'm

    From what you describe, I'm wondering whether you live outside the US?  In any event, the odds are greatly in your favor that this is NOT a malignancy.  Fibroids can grow very rapidly, like within a few months, and can necrose as they outgrow their blood supply. When I was about 28, I had a myomectomy for fibroids which were making it seem as if I were 5 months pregnant.  I had a lot of pain from them, and trouble with urination (in fact, there were times when I could not urinate at all, had to be catheterized twice) - and they were totally benign.  So there is every chance that what's going on with you is benign, too.  Sending you a private message.

  • Forherself
    Forherself Member Posts: 966 Member
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    Hard to wait.

    But the majority of abnormal bleeding is from benign causes.   Only 10% are from a malignancy.   But it doesn't seem to matter.  It is still scary.  I suspect you live in Canada.   Waiting that long or an MRI is unreasonable.  I'm glad you went ahead and had it done fast.  Why prolong all the worry.  I don't think anyone who has not gone through this understands.  And that is the wonderful thing about this discussion group.   All have been there and understand what you are feeling.   You can share your feelings here.  

  • Laceygirl
    Laceygirl Member Posts: 9
    edited March 2019 #5
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    Thanks for the replies...

    Wow thanks so much ladies for the replies and support... Yes, you are correct I do live in Canada (Vancouver area in BC).  I am still, unfortuantely suffering from this bladder infection despite antibiotics and this feeling of having to pee all the time.  I will mention this when I see my family doctor tomorrow.  The more I research this the more it seems that the odds are in my favour but I just can't seem to shake this feeling.  My symptoms seemed to come on so suddenly... the massive hemorrage followed by the abdominal pain and non stop bleeding/discharge and then of course the bladder pressure and pain.  It is very alarming and concerning.  I do take comfort in the fact that the kind of cancer they are suspecting, leiomyosarcoma, is extremely rare.  I will update this thread with all of my results to hopefully help myself along this journey, along with anyone else reading this now and in the future.  

  • Forherself
    Forherself Member Posts: 966 Member
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    Laceygirl said:

    Thanks for the replies...

    Wow thanks so much ladies for the replies and support... Yes, you are correct I do live in Canada (Vancouver area in BC).  I am still, unfortuantely suffering from this bladder infection despite antibiotics and this feeling of having to pee all the time.  I will mention this when I see my family doctor tomorrow.  The more I research this the more it seems that the odds are in my favour but I just can't seem to shake this feeling.  My symptoms seemed to come on so suddenly... the massive hemorrage followed by the abdominal pain and non stop bleeding/discharge and then of course the bladder pressure and pain.  It is very alarming and concerning.  I do take comfort in the fact that the kind of cancer they are suspecting, leiomyosarcoma, is extremely rare.  I will update this thread with all of my results to hopefully help myself along this journey, along with anyone else reading this now and in the future.  

    My picture was taken on Hornby Island

    My husband was born in Vancouver.  The good news is I have seen lots of research coming out of UBC.  BC takes an active role in researching and treating uterine problems.  I think we all know your anxiety.  Normal.   And most likely you will receive good news.  And we all are glad to have had hysterectomy surgery.  If your news is good its still great to not have to worry about it again.

  • MugsBugs
    MugsBugs Member Posts: 111 Member
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    Benign Fibroids

    The good news is that the chances are your symptoms are related to Fibroids and not cancer.  Massive bleeding is really annoying but I was too busy to let it slow me down.  I had fibroids since I was 40 and dealt with them (probably not the smartest thing but I was shy and didn't want to tell anyone how much I was bleeding).  I could never donate blood because I was always anemic.  When I mentioned it to my gyno I was told they would shrink after menapause (and they did - although I didn't got through menapause until 59 - another annoyance).

    Try not to stress (I know easier said than done) but in all likelyhood it is those nasty fibroids - they are benign demons - but demons none the less! 

    I am not Canadian but remember vividly being in Vancouver when my demon fibroids were being awful and being stuck in the Vancouver Airport - not fun!

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
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    The waiting is the worst!

    Hello Laceygirl,

    Yes the waiting is the worst!! I found it helpful if I just focused on the 'here and now' and what I knew. Try to stay with those facts and not speculate about the 'what ifs' which helped me. But I totally understand how the anxiety and fear can take over your mind!!    

    As this quote says " Worrying is a waste of time, it doesn't change anything, it just messes with your mind and steals your happiness" 

    Hoping and praying you get positive news. So hang in there and keep us posted. 

  • Forherself
    Forherself Member Posts: 966 Member
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    Yes I had that feeling

    You can read my story on my blog.   I ended up making flannel pillow cases for everyone I know during the waiting period.  It was conforting, and got my mind off the future.   You have not been diagnosed yet.   Most likely you don't have cancer.  And if you did it would most likely be endometrioid which is usually cured by surgery.  The high grade aggessive cancers are less common.  But they are very common on this message board because this is where people find support.  I said the Lord's prayer when I felt at the end of my rope.  I said it alot.  

  • ConnieSW
    ConnieSW Member Posts: 1,678 Member
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    We have held hands

    With many women  on this site as they anxiously awaited a possible cancer diagnosis and rejoiced with them when they got the all clear. My hope is we will be doing that with you very soon. 

  • janaes
    janaes Member Posts: 799 Member
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    For me it was taking it a day

    For me it was taking it a day at a time even a moment at a time. Its okay.

     Uterine cancer was my second cancer. I remember both times. I had to have a biopsy for both. My first cancer i remember just crying because i didnt know. It really does feel better after the wait. It was for me anyways.  Waiting is the hardest. You will get through it. Im hoping for the best results for you.

     

  • Laceygirl
    Laceygirl Member Posts: 9
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    I am sitting in my family

    I am sitting in my family doctor’s office now as this bladder infection has not gone away in spite of the antibiotics for 7 days.  I get so anxious at all my appointments these days.  My heart feels like it’s going to beat out of my chest!  I haven’t even heard the words “you have cancer” yet but I can’t seem to shake this horrible feeling in the pit of my stomach...I will review my MRI results with her and get her opinion as well.  I really hope I don’t have a mental breakdown before I even get to the gynocolgist on Thursday. How do you all deal with all this anxious waiting?  For those of you that have been diagnosed, did you have that feeling as well?

  • zsazsa1
    zsazsa1 Member Posts: 565 Member
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    A little technique I call Plausible Denial

    It worked for another woman on this board, and I hope it helps you.  Denial is an extremely useful technique, and in your case, it is not without basis to believe that you do NOT have cancer.  The fact is that it's far more likely that you just have benign fibroids.  It's totally plausible to believe that you just have fibroids, because that's what it's most likely going to be!  So you tell yourself, "I probably just have fibroids.  I will believe that, until I have to believe otherwise.  It is extraordinarily unlikely that this is cancer.  So I will believe what is most likely, that it's benign." 

    And then you try very hard to keep so busy with your daily life all day long that you cannot think about it, and if you cannot sleep at night, you drug yourself.  My drug of choice used to be, when I was younger, long 19th century novels that were very wordy and a bit boring.  Moby **** worked very well!  Nowadays, it is the screen.  I distract myself with Netflix or the like, until I fall asleep.  I wake up, turn it right back on, back to sleep.  That seems to distract me from thinking about what is going on medically.  I don't use sleep medications at all, but in your case, you might benefit from them temporarily if nothing else helps.

    I'm using "plausible denial" right now.  I know that I have a highly aggressive cancer.  I have read every study out there, I know what my odds are.  But I know that there is also a chance of a cure.  So I'm just going with that now, in denial that there is a decent chance that I will die of this disease, because it's totally plausible that I may be cured, and live.  So I'm just going along in denial about the possiblity of a bad outcome.

    Channel your inner Scarlett O'Hara.  "I can't think about that today.  I'll think about that tomorrow."  Whatever works for you.

  • Laceygirl
    Laceygirl Member Posts: 9
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    tips for gyno appointment tomorrow?

    Hi Everyone, I just wanted to say that it is so great to have so many super supportive people to help talk some sense into me!  I am trying to keep a positive attitude and remind myself that the odds are in my favour here.  However, on the chance that I am dealing with cancer, I would like to rush this surgery along as quickly as possible.  I am still considerably uncomfortable and very anxious as well.  Anyone have any tips or advice for me going into my gynocologist appointment tomorrow?  I feel like I only have one chance to be taken seriously and don't want to mess this up...thanks :)

     

  • janaes
    janaes Member Posts: 799 Member
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    My cancer was found by a

    My cancer was found by a biopsy. It was pretty accurate. Alot of ladies from this site would recomend a d n c to test for cancer. Ive heard it is a lot more reliable than the biopsy. Some ladies ended up doing both the biopsy first than the D n C. I would make sure they do what ever they need to to be sure. If your having the hysterectomy no mater what. The hysterectomy will diagnose you for sure if you have cancer. 

    I remember when my gynocologist gave me a biopsy she said she didnt think it was cancer. In my situation they were doing a hysterectomy no mater what. When they found the cancer they moved the hysterectomy up a lot sooner.

    I dont know if that helps. I wish you the best at your appointment.

  • MAbound
    MAbound Member Posts: 1,168 Member
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    zsazsa1 said:

    A little technique I call Plausible Denial

    It worked for another woman on this board, and I hope it helps you.  Denial is an extremely useful technique, and in your case, it is not without basis to believe that you do NOT have cancer.  The fact is that it's far more likely that you just have benign fibroids.  It's totally plausible to believe that you just have fibroids, because that's what it's most likely going to be!  So you tell yourself, "I probably just have fibroids.  I will believe that, until I have to believe otherwise.  It is extraordinarily unlikely that this is cancer.  So I will believe what is most likely, that it's benign." 

    And then you try very hard to keep so busy with your daily life all day long that you cannot think about it, and if you cannot sleep at night, you drug yourself.  My drug of choice used to be, when I was younger, long 19th century novels that were very wordy and a bit boring.  Moby **** worked very well!  Nowadays, it is the screen.  I distract myself with Netflix or the like, until I fall asleep.  I wake up, turn it right back on, back to sleep.  That seems to distract me from thinking about what is going on medically.  I don't use sleep medications at all, but in your case, you might benefit from them temporarily if nothing else helps.

    I'm using "plausible denial" right now.  I know that I have a highly aggressive cancer.  I have read every study out there, I know what my odds are.  But I know that there is also a chance of a cure.  So I'm just going with that now, in denial that there is a decent chance that I will die of this disease, because it's totally plausible that I may be cured, and live.  So I'm just going along in denial about the possiblity of a bad outcome.

    Channel your inner Scarlett O'Hara.  "I can't think about that today.  I'll think about that tomorrow."  Whatever works for you.

    Great mindset

    I like your mindset ZzaZza. It let's you live your life without this paralysing you. We give enough time to the beast without letting him take everything. 

  • zsazsa1
    zsazsa1 Member Posts: 565 Member
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    Lacey, it sounds as if the

    Lacey, it sounds as if the issue is the large mass in the muscle wall of the uterus - which would be consistent with a huge fibroid- and I know from personal experience that they can grow very quickly.  I did a quick bit of research today, and the chances of it being cancerous are slim - it is by far more likely to be a fibroid.  I don't think that they're going to recommend a biopsy - they can easily do a scraping of the lining of the uterus, but can't biopsy into the muscle wall.  Probably they're going to recommend a hysterectomy.  They may suggest doing a hormone medication, possibly Lupron depot shot, to shrink the fibroid before surgery, to make the surgery easier.

    You have to realize who you're hearing from on this board.  We're all women who desperately wish that we had had a hysterectomy BEFORE we developed uterine cancer.  So I for one, and I suspect everyone else, is biased in favor of hysterectomy, even total hysterectomy, meaning taking out the ovaries, fallopian tubes, uterus, and cervix, before cancer can develop.  The gynecologist may recommend otherwise.  I, for one, have realized that my perfectly qualified and experienced GYN missed my early report of symptoms - a lot of other women have had the same experience.  So from where I sit, my attitude is get it out if you're done having children.  But the fact is that most women will NOT develop GYN cancer.  The overall lifetime risk of uterine cancer is about 3%, and of ovarian cancer is about 1.4%, and of cervical cancer about 0.6%.  Risks can be personalized by genetic testing - but I have had ALL tests available for cancer genetics - and I still got uterine cancer which developed when I was 56.  But I don't know if I would have wanted my ovaries out when I was only 41.  51, sure, but 41?  These are all issues that you will want to discuss with the gynecologist.

    One thing that you do NOT want is a surgical approach that could spread cancer, if God forbid, this is cancerous, instead of just a fibroid.  So you don't want the fibroid cut into for removal, and you want the entire specimen removed in one piece, if at all possible, if the gynecologist recommends hysterectomy.  If for whatever reason, they cannot remove it in one piece, they should use an approach that keeps it from spilling out into the body.  I don't know what the current thinking is in Canada, but in the US, there has been a massive shift only 5 years ago away from a procedure done for hysterectomy for fibroids, that wound up spreading the cancer in the few who had cancer in the fibroid.

    Your take home message is that it's probably just a fibroid, you need treatment, which may be a hysterectomy, and you need it quickly because your urinary symptoms are debilitating (since you have to argue to get to the front of the surgery line in Canada) - so play up your urinary symptoms!  The chances of it being cancer are probably low.  If you're having surgery, you want every precaution to be taken to keep from the very slim chance of spreading anything that might be in that fibroid.

    There are women who have troublesome fibroids at your age who are managed medically, and then at menopause the fibroids shrink, and they don't wind up needing a hysterectomy.  Me - I'd want the hysterectomy.  But I have uterine cancer.  But from what you say you are having a serious urinary symptoms that are being caused by this (and if anyone tells you that it cannot be related to the fibroid, that's not true - any pressure on the bladder, even from chronic constipation, can increase the risk and incidence of UTIs, so of course a huge fibroid could cause that!

    Good luck tomorrow.  Bring an intelligent adult with you to the visit, to take notes for you.  You may be so nervous that you don't remember a thing afterwards!  Make notes with all your questions before you go in, and hand the surgeon your clear, concise notes very early in the visit.  Ask direct, concise questions, until you understand everything that you need to understand.

    Really, it's going to be fine.  The odds are like 350:1 that you DON'T have cancer!

  • Laceygirl
    Laceygirl Member Posts: 9
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    So met with the gyno

    So met with the gyno yesterday.  He seems fairly confident that it's a fibroid (which is good news), but he also said there is really no way to know until it comes out.  He did decide to do a uterine biospy (ouch!) and I will go back for those results in 6 weeks.  We decided on a hystorectomy (without cutting the fibroid up) vaginally, and if that doesn't work then abdominally.  I don't have my surgery date yet, but was told it's likely to be June or July.  I asked to be placed on a cancellation list but don't really feel like that will get me anywhere.  I am assuming if anything questionable comes up in the biopsy they will bump the surgery, but who knows.  I am slightly relieved, but I honestly won't be able to relax until this is all over.  So it looks like I'm going to be waiting a few months... I still can't shake this bad feeling though.  It's pretty crazy that they make you wait this long for surgery.  In the meantime he's given me some meds to take to help control the heavy bleeding.  After the biopsy results, he will give me a Depot shot to try to shrink it before surgery.  

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
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    D&C

    Would he consider doing a D&C. Often they don’t get enough tissue to be of any value with an endometrial biopsy and yes it hurts like hell. 

  • Laceygirl
    Laceygirl Member Posts: 9
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    D&C

    Would he consider doing a D&C. Often they don’t get enough tissue to be of any value with an endometrial biopsy and yes it hurts like hell. 

    I don’t think he will do a d

    I don’t think he will do a d&c because he’s taking the uterus out in a few months anyways.  

  • zsazsa1
    zsazsa1 Member Posts: 565 Member
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    I'm assuming that by uterine

    I'm assuming that by uterine biopsy you mean he did an endometrial biopsy through the cervix via a vaginal exam?

    It sounds to me as if you're getting appropriate treatment.  The large fibroid will hopefully shrink so that it can be removed more easily.  It's going to take time for the Lupron depot shot to shrink the fibroid.

    Good news is that he's pretty sure it's just a fibroid!  That's good!  If he were worried that it's leiomyosarcoma, he'd be rushing you into surgery, never mind any waiting list.