Update on my chest pain. I think I'm in the Twilight Zone.

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Bluebirdgirl
Bluebirdgirl Member Posts: 115
edited October 2016 in DCIS (Ductal Carcinoma In Situ)

As I previously posted, I was having chest pain and was worried about pleurisy. It went away but came back at bedtime so bad I could not take a deep breath without a horrible, sharp pain. DH drove me to the closest ER (we live in small town rural area and my clinic I usually go to is 45 minutes away.). I didn't think I would make the longer drive. They do a chest x-Ray, negative for pleurisy, d-dimer blood test is a little high so they do a cat scan with iodine of my chest. This doctor comes back into my room and says well, the cat scan doesn't show any pulmonary embolism, but it did show a 3 cm lesion on your liver which we believe is a metastasis. I said a metastasis? But I had DCIS, a clear SNB and BMX, how could that be? He said well, it's close to the liver. I was in complete shock, as was my DH. I then said could it be something else? He said well, it could be a cyst, but we really think we are looking at a metastasis. You need to go see your surgeon and get an oncologist, good luck, and walked out. To say we were in shock and totally devastated is an understatement. We cried all night just about.

I immediately got ahold of friends and family the next morning and everyone agreed you can't say that it is cancer without a biopsy, period. And usually liver metastasis is from the colon. OH, GREAT! Now I probably have colon cancer too!!! I haven't even had my first colonoscopy yet as I am 49. Planned on getting one in the spring when I turn 50.

It was Labor Day yesterday so I was only able to speak to my surgeon's assistant, very nice young man, and he was very reassuring that most lesions are benign, come in Tuesday and we will set you up for a CT of abdomen and liver biopsy.

I am so worried and distraught right now. I have made it through all the waiting and worrying over breast biopsy, BMX, waiting for path reports, and now I get to do it all over again. I managed to get through yesterday fairly well and trying to think positive. Now every time I pass gas though I tell my husband that's a symptom of colon cancer!!!

Only positive note is many years ago my mom was told she had liver cancer and it turned out to be benign. And her side of the family tends to have a lot of internal cysts. My aunt says we are a "cyst family" lol. My mother had the autoimmune disease primary biliary cirrhosis, which attacks and destroys your liver. She died in 2011 at age 62. I get my liver bloodwork done EVERY year because of this.

Sorry this is so long. I have been so happy to find this forum where people understand what you are going through. I go see my surgeon today, I will update as it goes along. Thanks for listening

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  • Annette47
    Annette47 Member Posts: 957
    edited September 2016

    Yikes - how frightening. And how callous of the ER doctor.

    I don’t have any personal experience, but I have seen many people come through these boards (not usually on the DCIS) one with “something” found on their liver that turns out to be benign ... sure hoping you get added to that roster as well.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited September 2016

    Wow, there are so many things wrong with how you were treated I just want to scream and then send that ER doc back to school. Slow deep breaths first, then I hope you see an oncologist who actually knows a thing or two and doesn't speculate.

    Please keep us posted on how you're doing.

    I've got a long story about an ER doc jumping to the wrong conclusion about my recent visit but the bottom line he was 100% wrong AND he put me through tests which could have ended badly...all to prove his dx which was incorrect.

    ER doc's should use evidence and not speculation to find a diagnosis. Hugs to you

    Amy

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  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    Thanks Annette and Amy (my name is Amy as well!). I am seeing my surgeon this afternoon to get these tests scheduled. I am trying to keep my mind on other things....so hard. But yes, maybe I will join the roster of benign liver lesions!! Amy, sounds like your ER doctor visit was much worse than mine, glad he didn't kill you! If this is benign, I am writing ER doc a letter telling him he needs to change the way he talks to his patients! Doubt he will care, but I will feel better.

    Thanks!

    Amy

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  • Kkubsky
    Kkubsky Member Posts: 231
    edited September 2016

    I had a liver lesion years ago (before my DCIS dx) that was suspicious and needed further imaging. It was also an incidental finding on a Cat Scan for something else. Had an MRI done and it is a benign hemangioma. Years later (also before my DCIS dx) I was going through some other testing and again it showed up and dr(different one from original) wanted further imaging. I showed him the first test results and no further testing done. I imagine it is a bit more frightening after a DCIS or any cancer dx, but just wanted to share my story of benign liver lesion....

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  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    Kkubsky, thank you for sharing that! Those are the kinds of stories that make the fear lessen just a bit. So glad it was benign!!

    I had been waiting two days for insurance approval of a CT (since I can't have an MRI because of expanders.) Yesterday I'd had enough and called a family friend that worked for said insurance company. She had it approved in 10 minutes!! The nurse didn't delete MRI request, only wrote a note explaining why the change to a CT and insurance company didn't read the note. Two days waiting!! So now I have a triphasic CT of liver scheduled for this Monday, the 12th, at 9:40 am and oncology appointment that afternoon at 2:00. I feel better having a plan of action. Still scared to death but determined to have a GOOD weekend!! Screw it! Lol

    I will update with good news, hopefully, next week. Thanks again for sharing your story!

    Bluebirdgirl

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  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    UPDATE:

    Had triphasic liver CT on 9-12, it showed "washout," suspicious for metastasis to liver. Onc said his gut feeling is this is a hemangioma and they can have washout as well. So he ordered a pet scan, had it on 9-15. It did not show anything, did not light up the liver lesion. He said my scan was "basically" normal. I said why the qualifier? "It was normal, ma'am." When I got home I read the pet report. It says,"Liver uptake is heterogeneous, but there is no definite focal abnormal hyper metabolic uptake in the area of the lesion seen on CT." I don't know if what that means!!

    He then says he wants to put me on tamoxifen for five years and for me to see him every 3 - 6 months for the first 3 years. My estrogen on path report was like 98% or close to that. Then when my expanders are out he wants me to have an mri of the liver. He will not consider a biopsy of liver, says it is too risky for hemorrhage. Hmmmmm. SO, I am going to get a second opinion on all of this. I am so glad the pet scan was basically normal, but it isn't the same as having a biopsy IMO. Anybody have any thoughts or stories to share?

    Thanks

    Bluebird

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  • Momine
    Momine Member Posts: 7,859
    edited September 2016

    My dh had cancer and ALSO had a large hemangioma on his liver. They absolutely refused to biopsy the hemangioma, because of the bleeding risk. Hemangiomas are quite common, but because they rarely cause symptoms, they are typically only found when you are being scanned for other reasons. I understand that it is worrisome, but chances are that it is, indeed a hemangioma

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  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited September 2016

    Thank you, Momine, for sharing your story. I like those kind!!

    My anxiety has lessened after pet scan, that's for sure, but doubt lingers. I'm not a pessimist, I'm a realist lol. The tamoxifen scares me, also. I may start a new thread on that. I have spoken to two friends who have taken it, one had no side effects, the other had all kinds of side effects.

    Thanks again. Hoping it's a hemangioma!!!

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  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited October 2016

    Another update:

    I had my second opinion appointment last Friday. I REALLY liked this onc!! The office staff was wonderful also. He agreed with the tamoxifen prescription. He also suggested I get an ultrasound of ovaries and uterus. The main concern I had was the two previous liver ct scans I had that were reported as suspicious for malignancy. He reviewed them with a radiologist at the hospital and they both agree that it is a hemangioma. I haven't talked to onc since I received that info from his office, as I am curious why they think it is a hemangioma. My pet scan was normal and I had DCIS, grade 3, no invasiveness. So perhaps I have an atypical hemangioma that gives appearance of malignant tumor? I don't know.

    So I am "firing" my previous onc and keeping this new one. He was so much more professional and kind and seemed to know his sh**! The previous one told me I didn't have breast cancer and shouldn't have had a BMX. He also told me I was "sensitive." If he had taken the time to look at my records and talk to me like a human being he might have seen why I chose BMX. I have two beautiful daughters, 18 and 16. Their father died of multiple myeloma when he was 42. So I am doing everything in my power to stay alive and I realize how lucky I am to have caught this early.

    Just wanted to vent and share!! Hope everyone has a good week!

    Bluebirdgirl

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  • Dizzybee
    Dizzybee Member Posts: 142
    edited October 2016

    Bluebirdgirl, this is so frightening for you, I'm so happy for you that this is a hemangioma not a met. Like you, I have grade 3 DCIS and it scares me that I have a tiger, not a pussycat. I can understand why you opted for a bmx. They tell us that DCIS is the good diagnosis, as if it's nothing to worry about, but when it's high grade it's completely different from a grade 1 which might never become invasive anyway.

    Tbh I'm a bit tired of hearing that DCIS isn't really cancer, I have the same fear of recurrence as if this was stage 1 not stage 0. And I still don't have clear margins and may have to have a mx anyway.

    So I really hope you don't have any more scares like this one, you and your daughter's don't need this on top of everything else. Good luck!


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  • Bluebirdgirl
    Bluebirdgirl Member Posts: 115
    edited October 2016

    Dizzybee, thanks for the support and kind words! I am sorry you are going through this as well and I hope you get clear margins. And I agree with you, DCIS is cancer, it's a pre-invasive cancer. And especially grade 3 with comedo necrosis, that's the last step before it breaks out of the ducts basically. We all have the right to choose our own treatment. What's right for one may not be right for another. But for an oncologist to tell me I shouldn't have had a BMX is just abusive IMO. I can't glue them back on, doc!! They are gone and I don't regret it one bit, so don't add insult to injury. That is just the poor practice of medicine to talk to a patient like that. But anyway, he is out of my life and I like the new onc. I will be so glad when I turn 50 next year!!!! Never complaining about getting old again LOL.

    Thanks again, dizzybee, and good luck to you!!

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