Worried about bladder mets

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Hi ladies, I've had burning off and on in my vaginal area for almost a month. I saw my Onc three weeks ago and he did a urinalysis which came back clean. I also saw my PCP and she did a pelvic exam which was fine. This morning there was blood when I wiped so my PCP did another urinalysis which came back clean. She said it could just be vaginal irritation and prescribed Diflucan which I haven't taken because I've had a yeast infection and this is nothing like that. I'm still having burning and blood. It's not on my underwear so I don't think it's my period coming back, plus there's the burning. So if it's not an infection then I'm terrified it's bladder mets! I don't want an infection either because I've had C Diff three times from antibiotics so I'm scared of those too! I mean I'd rather it be an infection than mets but still. Then there's vaginal and vulvar mets to worry about. My husband thinks I should just ca my PCP back tomorrow but I don't know what else she can do except send me to a specialist. I almost want to go to the ER because I would think they could run all necessary tests and get results there. Should I just wait and see what my PCP says? What would you all do? Thanks for any insight and/or experience? I'm scared out of my mind right now! 

Comments

  • ppplocke
    ppplocke Member Posts: 44
    edited September 2014

    Hi there.  As best I know the places BC loves to go are regional (breast or skin), lungs, liver, bones or brain.  I have not ever heard of anyone with a bladder BC met.  Ever. I know what you are going through.  I am days away from 4 years out and I saw a red line on my gum today...instead of thinking normal stuff I think immediately that I have oral cancer.  It is a mind trip (as an aside I do not have oral cancer...I have an inflamed gum).  Every little thing now could be cancer...in my mind anyway...but in reality....it is likely just life and age!

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    What about spreading to the vagina or vulva? 

  • raffomimi
    raffomimi Member Posts: 96
    edited September 2014

    It could be a bout of cystitis, sounds very like your symptoms . I have had three bouts of UTI's in the matter of 8 weeks, now I am at present waiting on a hysteroscopy and D&C and biopsies after post menopausal bleeding twice , appointment is Sept 15th(forced into menopause aged 38) thickened endometrium, and ill defined margins on ultrasounds. Like ppplocke said, breast cancer usually spreads to the skin, liver, lungs, brain and bones. I'm sure your doctor is aware of your medical history despite having 3 bouts C-Diff which must have been harrowing for you. Take the tablets  then see how you are, no point worrying about the what if's. Indications sound like cystitis, take the tablets instead of worrying yourself into the ground with speculation. I'm sure the docs know what they are prescribing to you and the fact that you have no indication of any infection with the urinalysis. If you are still concerned after you take the tablets, then make an appointment to have a pelvic/abdominal ultrasound done to put your mind at rest.

    Blessings

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Thanks for replying. The Diflucan my PCP prescribed are for yeast infection and she was just guessing. I talked to an infectious disease doc and he said Diflucan "can" cause C Diff so I haven't taken it yet. I do have an appointment with a gyno today and I'll ask him for ultrasounds. I don't think it's a yeast infection because there's no discharge and there's bleeding. I'm hoping for just a vaginal tear or something. My PCP doesn't think it's a UTI since I've had two clean urinalysis'. Thanks again 

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Hello, I just got home from the gyno. He did another urinalysis which showed no bacteria, so he did a pelvic. He said it looks like I'm low on estrogen. Chemo put me in menopause. I'm only 38 too. Well anyway he said it's possible the burning feeling is irritation due to hormonal imbalance and the blood "could" be my ovaries waking up. He said we could wait and see how things go OR he would do a uterine biopsy to see if it tells us anything. So I said go ahead and do the biopsy since I'm horrible at waiting and I'd just be worried anyway. So he said the results would be back in about a week. I guess if the biopsy shows nothing and I'm still having the issue I'll have to ask for a urologist, but I don't know for sure. Please keep me on your prayers. Thanks!!

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Hi ladies, I am going to call tomorrow and try to talk to the doctor who did my biopsy but I was wondering if any of you could help me out any? I have been having some lower left abdominal pain the past few days. It's not too bad and just comes and goes right now. I'm still having some bleeding too. I actually had it last month at the time of my three month checkup with my Onc and that's why he did a urinalysis. My question is, do you gals think that if I have an ovarian cyst or something similar, would the doctors who did a pelvic be able to feel them? The doc who did the biopsy on Tuesday did a pelvic first and my PCP did one a couple of weeks ago. I don't feel bad or have any fever. I'm just worried! Any ideas? Thanks in advance!

    Oh and raffomimi, I hope your appointment goes well tomorrow!

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited September 2014

    One of the least-admitted things about gyn care is that they can't even feel your ovaries unless you are very very thin a lot of the time, so I would think you would need an ultrasound. The only symptom I had of a huge ovarian tumor was that feeling of having a bladder infection with clean UAs., so yes, I think it could be a cyst or something. I was thinking that when I saw another of your posts.

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Hi Melissa I am pretty thin. My PCP said ovaries felt fine a few weeks ago. Should've mentioned that. Sorry. Now I'm worried about a tumor. It's nothing you said. It's just how my mind works after having cancer especially since I'm having blood on my toilet paper when I wipe. There were a few tiny clots in it last night. Then nothing this morning. It's like it comes and goes. Sorry if TMI. I figured the gyno would've mentioned an ultrasound but I told him to do the endometrial biopsy not thinking clearly. Ugh. I'm in Lubbock right now visiting family and don't get back to NC until Thursday. Do you think this is urgent? Like should I go to an ER here and ask for an ultrasound? Sorry I'm just scared! 

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited September 2014

    I don't think any ovarian thing is causing your bleeding. No, I don't think this is an emergency or a tumor and that is certainly not what I mean't when I said a big cyst could make you have bladder symptoms. Just wait for your testing. I'm sorry you're so anxious. I've been there & it sucks. I'd go with the fact your doctors don't seem to think there is anything very concerning going on.

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    The thing that's frustrating is if it's not a UTI then what the heck is it, you know?! Maybe it is just my ovaries waking up again and the burning feeling is just irritation from low estrogen. I don't know. It's just frustrating!

  • raffomimi
    raffomimi Member Posts: 96
    edited September 2014

    Hi Luvmydobies

    Well I cancelled the hysteroscopy at my local hospital because it would take too long for the pathology to come back so I made an appointment with an oncology gynae around 100 miles away privately tomorrow Thursday and pathology will only take three days to come back from a hysteroscopy etc etc. Hey Luvmydobies, like I don't have enough woes going on in my life, I went back to the GP on Friday because of my what I assumed was a "uti", turns out after a urine sample was sent to the lab Saturday and after being on antibiotics for the last week, low and behold I don't actually  have a UTI, so I was incorrect when I typed above saying three bouts, in fact I had one bout in Mid July and the last two trips to my GP shows blood in my urine and in fact no uti's. The other GP I saw Friday week actually asked me was I menstruating, had to tell him I'm in full menopause since aged 38(now 41)  when he did the dipstick test and the other GP I saw only Friday asked me the same thing, was I in the middle of a period because the dip stick urinalysis showed haematuria(blood in urine)  . He sent off urine to the lab, phoned me yesterday to tell me I don't have a UTI. Well well well, the plot thickens like my endometrium!!! .I've to go back to my GP Monday and to keep taking the antibiotics he prescribed.He's gonna do  another urinalysis and bloods and I'll just save him the time and tell him to send me to a urologist. He put me on another course of antibiotics last Friday(b4 he found out yesterday urinalysis stated no infection)  as did the other GP Friday week.

    Luvmydobies, get referred to a urologist for a cystoscopy and to gynae for a hysteroscopy. They are both definitive procedures and will get to the crux of what is causing the problems. That is what I am going to do. Hugs to you xoxo

    Raffomimi

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Lordy raffomimi, I'm sorry you've been thru such a whirlwind. You shouldn't be on antibiotics of you have no infection! Those can really create more problems if they're not needed. I do love my GP for not overprescribing meds. She says they're really training them on not giving antibiotics unless absolutely necessary. Anyway, I hope to get my biopsy results tomorrow and go from there. I noticed the past few days that the blood now is mixed with discharge and it looks more brown like either at the beginning or the end of a period, so I'm hoping it's just that my period may be coming back and is just wonky. My nurse navigator said that is a possibility. If it doesn't resolve soon then I'll ask my GP for a referral. I'll mention the  hysteroscopy when the doc calls with my biopsy results. I am hoping the irritation feeling is just dryness due to low estrogen like my doc mentioned. I'm still having off and on pain on the lower left and I will mention that as well and see if I need a vaginal ultrasound. I had one in April and it showed no abnormalities. HUGS to you too and please keep me posted. Praying for all of us! Thanks for the update too!

  • raffomimi
    raffomimi Member Posts: 96
    edited September 2014

    HiLuvmydobies

    Not long back from my travels. I'm booked in for a hysteroscopy and a cystoscopy 8th October and results a week later on both,the oncology gynae is on holidays starting next week. I feel relieved knowing that they will get to the bottom of this. How were your results??Let me know how you got on and any further developments.

    xoxoxo

    Hugs

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Hi, I still haven't heard anything and I was on a plane back from Texas most of the day so I didn't have time to call the doctor's office. I'm planning on calling again tomorrow if I don't hear anything by noon. I'm hoping no news is good news, but who the heck knows?!! I've been really stressed all week about my issue, plus my dad had an MRI of his ear area because of sudden hearing loss. They said it could be because of his diabetes, allergies, auto immune or a tumor, so I'm worried about him and my mom as well. My stomach doesn't feel good but I've been crying pretty bad all week and I'm hoping the tummy stuff is just from intense stress, but I'm sure you know what my fear is, which is mets. Ugh the fun never stops! LOL! Anyway, I'm glad you have your appointments lined up and I'll be thinking of you too. I'll let you know what I find out, hopefully tomorrow. 

    Hugs and more hugs to you as well. Thanks for the update!

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Well someone called about my biopsy and the lady was just from the nurses station. She couldn't really understand the results! She said she thought it meant they didn't get enough tissue to do it! It was so painful so when the doctor calls I'm going to ask for an ultrasound or something else less invasive. This sucks! She said IF he doesn't call today to call back Monday or Tuesday. I don't want to sit on this all weekend but I don't know what else to do. Ugh!

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Ugh, ladies I could use some prayers please! Yesterday my lower right side of my abdomen started hurting off and on, mostly when I stand up and/or when I walk. So I am going to try to call the gynocologist office where I had my biopsy and tell them what's going on and I guess ask for an ultrasound? I don't know what else to do. I have all kinds of scary stuff going thru my head, like any kind of mets from liver to ovarian or pelvis mets, cysts, or some kind of bad infection, although I don't feel bad or have fever! Anyway just venting because the hubby is getting frustrated. Hope all of you are doing well! XOXO!

  • bevin
    bevin Member Posts: 1,902
    edited September 2014

    Lower right  side can be appendicitis...do you still have your appendix?

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    I do have my appendix. The pain was on the left the other day and now on the right mostly. I mentioned appendicitis to the docs as a possibility because I know everything isn't always textbook, but both my PCP and the gyno didn't think it was my appendix. I don't have rebound pain or fever. I still have irritation or burning feeling down there but THREE urinalysis' have come back clean. I did a search on this site for appendicitis and read too much. I read some posts that said liver mets presented as lower abdominal pain. YIKES!!! My hubby is like you don't have appendicitis or liver mets! Didn't know he was a doctor!  Ugh... If I have to I'll take myself to the ER. He's just frustrated because I've been whining about what I'm afraid this is. 

  • wallan
    wallan Member Posts: 1,275
    edited September 2014

    Hey there:

      Many years ago, before BC, I had burning when I went pee, but after three separate urinalysis, I was told i did not have a UTI, just irritation. So, okay. Within a few weeks, I started to have blood when I wiped myself you know... again, I thought "irritation".  Until a few days later, I went pee, and the whole toilet was filled with blood and clots. I started having to pee urgently after that and lots of blood. I went to the ER.  They put a scope up into my bladder and found out I had a raging infection even though urinalysis showed no infection. Heavy duty antibiotics for about two months cleared it up.

    It was very frightening. 

      Have you had a scope into your bladder yet?

    Wendy

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Wendy, I haven't had a scope of my bladder but haven't had any bleeding in a few days. I'm thinking that was actually a period. Now I really don't know what to do!   I'm scared! Should I ask for a urine culture instead of just relying on a regular urinalysis? I know cultures can take awhile for results. I'm also terrified of antibiotics due to C Diff! Should I wait to be referred to a urologist? Go to the gyno for ultrasounds? Go to ER and get everything done there? I'm also nervous about germs so don't want to go there unless it's a must but part of me says go because who knows when I could see a urologist. Hmmm... 

    Wendy are you talking about a cystoscope? Do you have to take antibiotics to get that done? My sister had one done awhile back and they gave her an antibiotic shot before the scope. I will take antibiotics if it's a must because my infectious disease doc and my PCP both said not to unless it is. Anyway thanks for any info! 

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Ok I called and got an appointment for this afternoon at 1:40 eastern time. I am going to the same place (UNC Hospital) that did my biopsy but have to see a different doctor. The one who did the biopsy is out until Oct. I thought about seeing my PCP but she just doesn't have the equipment like ultrasounds in her office and I don't want to wait for a referral. Plus if she does labs she will have to send them off and wait. At UNC they have the lab right there so hopefully I can at least get ultrasounds and I'm going to ask them to send a urine sample to be cultured. 

  • wallan
    wallan Member Posts: 1,275
    edited September 2014

    Glad you have an appointment! You will get to the bottom of it.

    I guess I was talking about a cytoscope - they put a scope up my urethra to look into my bladder at the ER. No antibiotics given for it. 

     HUGS to you and let us know whats going on.

    Wendy

  • raffomimi
    raffomimi Member Posts: 96
    edited September 2014

    Luvmydobies

    You are doing the right thing. The waiting and the not knowing is horrible and the worst part is the unknown. Hopefully soon you will know what you are dealing with. I went to my GP this morning, urinalysis showing microscopic haematuria again, that's nearly a month. Well D day is a week after the 8th October, in the mean time, I got the nurse to send a sample to the lab and do a batch of bloods.Got painkillers,not gonna be a martyr until the 8th October in discomfort, got paracetamol and codeine. I'm like a walking pharmacy!

    Praying for you 

    Hugs

    https://www.youtube.com/watch?v=nSXs6f2LMvk

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Thanks ladies!  Sorry for not replying sooner. I was at the doberman rescue where I do volunteer work all day today. Anyway yesterday they did another urinalysis and it came back clean, no trace of blood or bacteria. The gyno didn't think it was my appendix or gynecological so she wouldn't do an ultrasound but I'm still having pain and some burning. I have an appointment Monday with my PCP who knows my situation better, and I guess she will refer me to a specialist. I don't even know what to ask her at this point. Something is going on and I'm still terrified that this is mets! If it's not an infection, is it something worse like cancer? Maybe just cystitis? But who the heck knows. I'm NOT asking for a diagnosis on BCO, just venting. 

    Raffomimi thanks so much for the prayers. I'm praying for you and thinking about you too. Glad you got some meds to make you more comfortable! Wendy thanks for the hugs and info about the scope. I'll keep y'all posted! 

    Edit to add: From what I've read online it says Cystitis is characterized by multiple trips to the bathroom and during the night, which I'm not having, and it says pelvic pain increases when the bladder is full. I am peeing more during the day and have been for awhile but I'm drinking a lot of water due to slight truncal lymphedema. The pain kind of comes and goes whether I need to pee or not. It doesn't really hurt much when I'm sitting or laying down. It hurts mostly like when I walk. It's weird. Again not asking for a diagnosis here, but if you have any ideas please let me know. Thanks again!

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    I'm having the bloody discharge again. Ugh!  I have an appointment with my PCP in the morning. This probably sounds dumb but do any of you know if it could just be my period trying to come back? I'm 38. I just hate thinking mets all the time! I'm still having some very slight burning but more like a very a light irritation/itchy feeling as well but the blood is mixed with discharge. I'd assume if it was blood from the bladder it wouldn't look like discharge, is that right? I've also felt bloated some late afternoons/evenings as well. My husband thinks that's due to over eating of carbs and junk. I've been stress eating lately because if this crap! So being bloated I'm still worried it could be ovarian, uterine, vaginal or vulva mets. I'm really ticked off now since they didn't even do the endometrial biopsy correctly!! Is it common for BC to spread to the uterus if you don't take Tamoxifen and were Triple Negative??

     I'm also kicking myself for not insisting on a urine culture instead if relying on the dip test alone, even though four have come back negative for infection! Also kicking myself for not demanding an ultrasound Monday. The one in April was normal. Hopefully that's a good sign but things can change anytime too! Ugh. Any tips, or other advice is appreciated. 

  • april485
    april485 Member Posts: 3,257
    edited September 2014

    Hi luvmydobies-As to the burning and your doc telling you that you may have low estrogen, that can easily thin out your skin in your vaginal area which causes the pain/buring on urination. That is what happened to me after I began taking Armoasin and it got rid of all of my estrogen. The bleeding, if it is slight, can be from a tear in the skin inside if you knick it with a nail or something when you wipe yourself. Or, it could be your menstrual cycle I guess. Just wanted to tell you that low estrogen can cause burning down there! There is nothing you can really do about that either which sucks but...anyway, best to you and hope you find out what is going on soon!

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited September 2014

    Thanks April! I just got back from the doctor and she said she really thinks it's just my period trying to come back. She said the pelvic pain sounded like a functional cyst and then the bleeding that started and the bloating all point to menstrual stuff. She said with the pelvic exams I've had recently being normal that she really doesn't suspect cancer BUT we are monitoring closely. I have to trust her and just try to move on. The nurse navigator told me before that if I came out if chemopause to expect the unexpected so I have to keep that in mind as well.

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