Bilateral hydronephrosis-Lobular

KBL
KBL Member Posts: 2,521
edited April 2021 in Stage IV/Metastatic Breast Cancer ONLY

Here I am again, feeling like I'm on a lonely ship sailing all by myself. I've searched through the forums and cannot find a specific case of lobular that has spread to the ureters, the retroperitoneum, causing bilateral hydronephrosis.

I, of course, don't have that diagnosis, and like many of us know too well, may be jumping the gun. The pain is horrible right now. I'm waiting to see my doc for my monthly visit tomorrow. I will be making an appointment with a urologist tomorrow to see what needs to happen to get the pain to stop. I do not want to mask the pain, I want to fix it.

I also have fuzziness and pressure in my head. This may be something else, but I've slept most of the day. I have no meds in me, so it's not any kind of medical sleep.

If anyone knows someone who has lobular to their retroperitoneum and/or bilateral hydronephrosis, I'd love to talk to them. I don't know how the doctor visits will progress.

Edited to say I’m on Zometa, and am realizing maybe that’s what has caused my issue. We shall see. Have urology appointment tomorrow.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited April 2021

    KBL, so sorry that you’re in pain. That kind of spread to those parts of the body does sound like a more rare form of metastases. I don’t think I’ve read about anyone on here who’s experienced that. I hope you get some answers with further testing. Keep us posting. Thinking of you.


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  • KBL
    KBL Member Posts: 2,521
    edited April 2021

    Thank you, Divine. I guess I am jumping the gun. Hopefully it’s something minor and fixable.

    Doc did say Zometa will not cause this kind of problem.

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  • KBL
    KBL Member Posts: 2,521
    edited April 2021

    I am in so much pain right now. My urinary flow is slowing, and I can almost feel it building up inside me. It was flowing at a decent rate throughout the day. I’m trying not to get a bladder infection from it sitting in my kidneys. I absolutely despise bladder infections. I think they are the worst pain known to man. 11 hours to my appointment. I hope he can do something to ease my pain.

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  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited April 2021

    KBL, I am so sorry to hear about your pain. Is any line you can call, a nurse or a doctor on call to prescribe a pain killer?

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  • KBL
    KBL Member Posts: 2,521
    edited April 2021

    LillyIsHere, thank you. I know this may sound dumb, but I don’t want to mask the pain when I see the doctor this morning. I need to feel every ounce of it so I can tell him it hurts. If he gives the okay for a pain med after, I may take him up on it. I did take some Tylenol, and after a few hours it has relieved a bit. I never know when the awful pain is going to strike.

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  • KBL
    KBL Member Posts: 2,521
    edited April 2021

    Sitting in the waiting room and shaking at what I might find out. Kidneys are so important, and we sure do take them for granted.

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2021

    KBL, we're sorry you are going though this and in pain. Let us know what you learn at your appointment today!

    We wanted to give you a tip to help you find other members under similar circumstances than yours. If you go to the Search function in the left menu and type in "hydronephrosis" (without the quotes) as your search term, you'll see every time the word is mentioned in a post, and can then check out the thread and contact that member via private message if you want. You'll see some of your posts, but also others like this: Anyone with Retroperitoneal Fibrosis associated with BC

    .Hope this helps! Wishing you well!

    The Mods

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  • KBL
    KBL Member Posts: 2,521
    edited April 2021

    Thank you, Mods. I appreciate it. The appointment went okay. He wants a Mag3 renogram on Thursday, visit with him on Thursday, cystoscopy and stents on Friday.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited April 2021

    KBL, was your pain issue addressed by the doctor?


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  • KBL
    KBL Member Posts: 2,521
    edited April 2021

    Hi, Divine. My visit was very quick, and my pain has been doable so far today. I’m not allowed to take any meds for 72 hours before test, so I probably wouldn’t be able to take anything anyway.

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited April 2021

    KBL,

    i hope that your tests and procedures go smoothly. I was glad to hear that things are moving along quickly. My circumstances were different than yours, but I have had the Mag3 a couple of times and had cystoscopy and ureteral stents as well.

    The Mag3 is pretty easy to take. You pretty much just lie on your back (I was in a room with the lights turned down, very relaxing). They did an injection through an IV part way through the test. I was very happy to allowed to run to the lady’s room when the test was over. (Had to pee.) The room had a screen set up where I could see it. I found it interesting to see how things flow through the kidneys and ureters. The test, as you know, will give more information about blockages.

    The cystoscopies and insertions of stents were painless and easy, mainly because I slept through them. The recovery was swift. The stents did not bother me and I did not feel them although they were beginning to be a bit irritating right before they were removed.

    There is a women who used to post to this site who had stents in both ureters due to blockages. Surgery could not be done. She had the stents replaced every several months (4-6 I think). She had no ill effects or SEs from them. She did quite well with them.She stopped posting because she needed a break from so much cancer info.

    Let me know if you have any questions. I will answer if I can although, as I said, my circumstances were different.

    Keep us informed about how you are doing.

    Hugs and prayers from, lynne


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2021

    Gosh, KBL, I'm so sorry you are going through this. It's good you are being seen now and there is a plan. I wish you could get immediate relief. I had my biliary stents for about 21 months and they worked like a charm. I hope you will feel good again, too. DId the doctor say whether he suspects ILC mets or some other cause?

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  • KBL
    KBL Member Posts: 2,521
    edited April 2021

    50sgirl, wow, what great information. Thank you so much. It always makes it easier when you know what to expect. I'm so glad it was easy for you. I hope I have the same result. I will also be knocked out, thank goodness.

    ShetlandPony, it's really weird how even though I had the stitch in my side for a few months, the severe pain came on suddenly. I hope they can figure out why it happened. I had a lady in another forum who said mets to the bladder from the breast is so rare, there's only like 50 cases reported since 1980. I would suspect it's not ILC, but I wouldn't rule anything out at this point with the way my journey has gone. I'm so appreciative my body does things that aren't the norm for me when something is wrong. This wasn't your typical back pain. This was like being kicked in the left side of the back by a horse. Before the mets were found in my stomach, I just couldn't eat more than a few bites and lost a lot of weight. I didn't have any vomiting, just nausea.

    I'll definitely come back and post my scan results and what's happening Friday.

    Thank you, again.

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  • KBL
    KBL Member Posts: 2,521
    edited April 2021

    50sgirl, I do have a few questions. Can you tell me how long the Mag3 test took? Where I’m having it done is right by the doctor’s office. It’s at 11, but my doctor’s appointment isn’t until 2:40. Wondering if I’ll have to head home for a little while after.

    Also, how long were your stents in when you said they started to irritate you? I have no idea how long mine will have to stay because I have no idea what’s causing the issue.

    Thank you

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  • KBL
    KBL Member Posts: 2,521
    edited April 2021

    I was just looking at Anne Loeser's Guide to Metastatic Breast Cancer. That is such a great resource.

    Here is what it says about other areas. I can’t tell whether it means it’s spread or it can just be a complication

    Other Areas: Sometimes breast cancer metastasis may impact or block the function of the ureters (tubes made of smooth muscle fibers that propel urine from the kidneys to the urinary bladder) and/or bile ducts (which carry bile from the liver and gallbladder through the pancreas to the small intestine and/or the duodenum (the first and shortest section of the small intestine). Patients will need to be individually assessed regarding appropriate treatment when this occurs

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited April 2021

    If I remember correctly, the Mag3 test took about an hour and a half. I was given a bottle of water to drink before the test, and Lasix was injected during the procedure. I think that the stent began to irritate my bladder after about 5 weeks. Mind you, it could all have been in my head! I did develop an easily treated infection with the second stent, so that was likely a contributing factor. The other person I told you about never felt any irritation at all even though her stents were in place for several months.

    I am sure there are all sorts of things running through your head right now. It will be good for you to get all the procedures completed so you have answers that let you know what is going on

    I agree that Anne's book includes a great deal of useful information. She is an amazing woman.


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  • KBL
    KBL Member Posts: 2,521
    edited April 2021

    Thank you, 50sgirl. I’ll hope that I’m one of the lucky ones with no issues.

    I’m in quite a bit of pain today and not able to eat much. I feel bad for my husband, as he’s having to drive me everywhere because my vision and head are not right. I’m feeling very foggy. I hope this clears with the stent placement. Two more days, a very long two more days.

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