Lost in Space - waiting for a Liver Biopsy

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Scwilly
Scwilly Member Posts: 489
edited November 2016 in Not Diagnosed With a Recurrence or Metastases but Concerned

So its was days from it being 3 years since my original DX, and I was starting to feel a little safer. However, two weeks ago on Sunday lunchtime, I was working on my Computer and I started to become very uncomfortable and sore on under my right rib. (SORRY: in my original post I put left rib) After resting in bed all afternoon, and night, the pain didn't go away, and was actually quite strong and unbearable. So I went to ER. A CT scan found nothing (I was wondering if it was a kidney stone - but none were found) I did have some evidence of an infection in the urine test, so I went home with a script for antibiotics, and some Percocet for the pain. My instruction were if it got worse, come back to ER, if it goes away - Happy Days, if its still the same in 7 days - see my primary care doctor.

I ended up spending much of the next week lounging around in bed, without much energy or inclination due to the pain. ON th eMOnday morning I was still in the same pain, so I booked a same day appointment with my doctor, who sent me for a CT scan with contrast. The results of this were that there were numerous spots that lit up on my liver! Everything else seems clear. Eek!

I was put in touch with my Oncologist to take things further (who I was actually meant to see next week for my 4 monthly checkup) I'm now booked in for a liver biopsy next week (Thursday - but I hope to get it sooner) and I am just waiting with a heavy heart. Though I know its not over until I'm diagnosed - I don't have any great expectations of anything else but a recurrence.

Now I have typed it out - I do feel better and I don't really have any questions - but I do feel lost in space, waiting for my number to be called!


Edited to put right rib not left rib.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2016

    Shoot - I am so sorry to hear this, but hoping the biopsy results are benign. Hang in there.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    I can relate, if the cancer doesn't kill us this constant threat of recurrence will. Please let us know about your biopsy results. Why can't we get any relief. A damn cure would be nice.

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  • KBeee
    KBeee Member Posts: 5,109
    edited November 2016

    sorry you are dealing with this. Keep us posted

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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    Thank you all for you words of support. I felt I was floating anonymously and n limbo, but know that this is a wonderful group who wouldn't let me feel alone. I'm going to call in Monday to see if there is anyway to be seen earlier, but otherwise will wait it out 'til Thursday.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    scwilly, I sure hope they can see you asap. Wishing you the best.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2016

    Hope you get in soon for your biopsy! There's nothing like THE WAIT. Take care of yourself, and let us know how it turns out!

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Aw what a horrid place to be right now. The bloody fear that hangs over us with every new issue. You know we get it. Our minds go there too. I'm surprised they're going right to biopsy. You must be scared. You are not alone sweetie. Please let us know how you do.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    It is horrible the "terror anxiety" I call it. Sometimes I wish if the cancer is back I just don't want to know. But of course catching it is key to survival. Hang in, we're here for you.

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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    Thanks again all, your thoughts for me keep me going.

    Meow - that terror is so hard and very real. I found my worst time was after I finished active treatment. I felt so vulnerable. In reading around BCO I came across a post from someone on a thread on this board. She was stage 4, and she said that worrying before any new DX is not good and wastes time. She said when you get a stage IV dx you will never wish you spent more time worrying. I found this such sound advice.

    So until now, I've actually been quite calm. My regular meetings with my Oncologist didn't feel scary. Though, I am always concious of new symptoms. So I am trying to get through these days without the initial dread I had last Thursday, when I found out they had found something on the CT scan. I need to remember it's not it until it is!

    Best wishes to all.

    Sarah


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  • librarychick64
    librarychick64 Member Posts: 14
    edited November 2016

    I am going through something a bit similar (spot found on CT scan, don't know what it is yet). This community is very helpful in making you feel better. I really, really, hope it is nothing! Hang in there; you have read some good advice. Sometimes I think it is better knowing and doing something than the waiting. It is the WORST!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    I can't seem to manage the terror anxiety. My mind knows that fretting is a waste of time and doesn't help at all but I still am struck down by terror.

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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    LibraryChick: I hear you about the not knowing. I have been thinking the worst for the last two weeks since my pain cropped up. But have now decided - $#£# it - and I have started to distract myself. I even went to mygym this morning having not gone there for 2 weeks. I usually do a Bodypump (weights) class on a Sunday morning, but went for a v slow swim instead. Feeling quite proud of myself. What's your next steps after you CT scan results?

    Meow: Have you tried anti-anxiety med s- I haven't but I know some on this board have found them useful. Try not to make it your every thought. So hard I know. Distraction is your best friend. But don't suffer too much, things won't change but it's your experience of each day that will be effected.

    Sarah

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited November 2016

    Scwilly, I hope your biopsy is negative! Do you mind me asking if they think your pain on the left side is due to whatever is on your liver? If you don't feel comfortable telling me you don't have to. I just didn't know it would cause pain on the left side.

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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    Yep, the pain is thought to be coming from my liver. I've just realised I put left - when it's actually my right side. Sorry for any confusion. It's just under my right ribs, and also hurts when I breathe deeply.

    Sarah

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  • JudyGG
    JudyGG Member Posts: 8
    edited November 2016

    scwilly-

    sorry this is why you are posting but glad it made you feel a bit better.  The waiting is never fun- keep your chin up

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2016

    Well now that I know I don't have spine mets I'm ok. But it will probably hit again after my mammogram next month. Earlier this year my breast MRI lit up a suspicious area. Well brand new MRI machine and it didn't look anything like my cancer tumor when first diagnosed. They did a biopsy on my DIEP it was nothing. But now after the biopsy my mammogram will look different. I have extremely dense breast so any change seen they will say biopsy. It is a vicious circle. And there is no right answer, but when I have my mammo I will push to not have biopsy atleast not until they do US or MRI. Sometimes I think all this checking is madness.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Sarah did they do blood work on you?

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  • librarychick64
    librarychick64 Member Posts: 14
    edited November 2016

    Scwilly: Next step is a PET scan. They wanted to wait until my 6 month checkup in January, do another CT scan to see if the spot grew, but I am too anxious, so I called back and asked them to do PET scan. Go for that on the 18th. I'm preparing for the worst; I don't want to be caught off-guard when (if) they tell me the cancer has returned.

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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    Judy: Thankyou

    Meow: goodness no wonder you are anxious, you have been through the wringer. I hope things settle down for you

    Barbie: yes, at ER they did. Numerous tests. My liver function tests ast/alt were raised since earlier in the year, so it llooks like something is going on.

    LibraryChick: no wonder you wanted you have more investigations, I am wishing for a good result of no recurrence for you.

    I'm feeling a bit better, but it's hard to tell give the pain relief I'm taking. It's still sore but not as bad. Managed a trip to the cinema a Sunday night, and thankfully didn't fall asleep like I usually do (I've been known to snore out loud, once in the only 30 second quiet spot of the latest James Bond movie!)

    Sarah

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Sarah are you taking any stomach meds like Nexium?

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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    Barbie: was taking Levothyroxine and an antidepressant before the pain started, Now in additionPercocet for pain and an antibiotic (my doc found I had a bladder infection so on ano anti-B)

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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    Just to let everyone know. I had the liver biopsy today and I expect the pathology results next week.

    However, I had a meeting with my MO just before ( was actually booked for ages as my 4 months followup) I decided I wanted to understand the CT results and hear her opinion. As I feared and expected, it does look like there is cancer there. I have a big area and also some other spots. My MO feels this is the most likely outcome, but it will all be confirmed by the biopsy. So I'm booked up to see her next Friday. If it is then I'll be on Xeloda, and no longer in limbo.she's also ordered a bone scan, but my gut feeling is this will be ok

    So I am no longer in lost in space, but lined up for docking into this new reality. I am determined that there will be no portly lady gargling in the background ready to sing! No end for me!

    Thank you all for being in my pocket during this limbo time. I'll update you all once I know definite results.

    Sarah

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    I guess I'm joining you. I do have mets but the liver would be a new site. A routine CT found some hypodense areas. I had to find out through my patient portal and put a call into my onc ASAP. Waiting for her. Funny thing was, my enzymes were the high end of normal a few months ago and I was worried but then wen down so I thought I was ok..

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2016
    Sarah, there are no words for how sorry I am to hear the way this is looking. IF you do end up on Xeloda I hope it will be extremely effective without being to hard on you.

    Bad At User Names - Very sorry to hear about your situation as well, and, again, I hope Xeloda does well by you.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Praying for you both. Please keep us posted.

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  • TLB140
    TLB140 Member Posts: 8
    edited November 2016

    Scwilly... this is happening to me as well. I was diagnosed in 2011 and had a double mastectomy. Was on Tamoxifin for a year then switched to Femara. I hit my 5 year mark but I wasnt excited because my lymph nodes were positive and I figured it was a matter of time before something else occured. My doctor teaches other doctors at colleges so I was good to go with my onco. She is making me take Femara for 10 years because studies were showing too many women having recurrences. Swallowing that pill for 5 more years in no problem for me if it means no cancer. In 2016 I retired and we moved to Florida. Before moving I had an Endo and Colonoscopy. Doc told me to follow up with a new doctor in Florida because he saw an enlarged vein in my esophagus which is indicative of a problem with the liver. So I did a follow up and with a gastro in Florida and he ultrasounds my liver and confirms it is a diseased liver, he called it inflamed. Now I have an appointment with Shands in December. They are going down my throat with an ultrasound to look around and then while in there they are going through my stomach and take some liver biopsies. The doctor told me he was 99.% sure it was not cancer. He said he suspects Tamoxifin is the culprit. I have been off Tamoxifin for many years. WTH. Since we are lost in space maybe we will bump into each other.
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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    TLB: most likely bump into each other in this limbo void, perhaps we'll find a nice space bar to have a few drinks whilst we wait! Looks like you have been through the wringer and wait like me for answers. Have you had blood test to check you live markers?I wish you all the best.

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  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    I got back my liver biopsy results today - and it is breast cancer. However, to my complete surprise it highly ER+, 95%. This is a massive surprise as I had the DX of triple negative IBC in November 2013 and had absolutely expected it to be this. In Jan 2015, I was DX with a small ER+ DCIS in my right breast, but with no sign of anything invasive in the pathology report for my subsequent mx.

    So this means I'm not to go on chemo, but am to take anti-hormone treatment, Anastrozole (Arimidex). I've already picked up my prescription and will start today.

    Goodness its been a rollercoaster both today and for the last few weeks. I feel so much better to know what tx I am to have and what I am up against.

    I wish everyone else a benign dx and send lots of support.

    Sarah

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  • stephincanada
    stephincanada Member Posts: 228
    edited November 2016

    Hi Sarah,

    It is a relief to know thatthere is targeted treatment for you. I am so sorry you have had to go through this and wish you lots of strength.

    Stephanie

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2016

    Sarah that's as good a bad news you can get. My recurrence is being treated with Arimidex as well. Hold judgement on the side effects. I stopped for a bit during rads and when I went back on it was better. If you get joint pain use Loratidine which is the active ingredient in Claritin. Good luck sweetie. You are not alone.

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