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Taken By Surprise...

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Hello....I have not posted here for a very long time but now find myself needing support so thank you in advance for your responses.

I am a nine year BC survivor and had a double mastectomy with implants in 2013. I did 8 rounds of chemo and did Femara for five years...I was Estrogen positive with Lobular carcinoma stage 2B with 8 lymph nodes removed (3 positive) I have always had good reports and still see my oncologists now once a year. I hae been in very good health since then and am almost 75 and otherwise healthy.

Recently I went to the ER for a severe stomach bug where they did a CT which showed cysts on my liver which I know have been there for at least 13 years. But they told me to get an MRI because they did not have one on file, so I had an MRI of the abdomen last week. The results were that my liver, pancreas, gall bladder, adrenal glands, kidneys, etc were all normal. My GI DR did an endoscopy yesterday and that also was normal. But the radiology report showed 3 areas of adenopathy/masses in the porta hepatis area that were concerning and possibility of malignancy (I think this is in the liver area) so I now have an appt with my oncologist next Monday to go over the report and see what we do next.

If it were not for the stomach bug I would never have even known of this area of concern because I have had no health issues, pain, etc.

So I know that radiologists in their reports just report findings and nothing more. But this report threw me for a loop..I of course go to the what ifs and I am trying really hard not to do this but it is very hard.

Now I am going to have either a purcutaneous radiology biopsy of those areas or another endoscopy with ultrasound of the concerning areas. I do not have a schedule for that yet.

This may be a whole lot of nothing or it may be the opposite..either way I keep reminding myself that this is just a radiology report and not a diagnosis...But I am scared and this sucks!!! Have any of you had radiology reports , jumped through all these hoops and it turned out to not be a reoccurrence?

Thank you for your responses


Comments

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    Yes, I had multiple scans because of suspicious symptoms that turned out to be nothing. Cancer symptoms can mimic many other conditions. Hopefully yours turn out to be nothing.
  • meme5
    meme5 Member Posts: 43
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    thank you for your response. It really helps.

  • moderators
    moderators Posts: 7,911
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    Hi meme5, and welcome (back) to the Community! We're so very sorry for the concerns that bring you here, but we're sending good thoughts your way that this is nothing at all to worry about. We know after an initial diagnosis, it can feel like the other shoe is always about to drop, so we're sorry you're going through this. Please keep us posted with what you find out and let us know if you need anything from us at all!

    --The Mods

  • meme5
    meme5 Member Posts: 43
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    Hello again…I had my liver biopsy which thankfully showed no indication of malignancy!

    Yesterday I had a Pet scan..scull to thigh. I got the results this morning.. It did not show any malignancy wording but in the neck area showed a 0.7 cm hypermetobolic lymph node (which I had a CT scan for back in May and was normal) with an SUV of 3.6-what does that mean? Said findings are concerning for metastatic disease. But no mention that findings are definitively cancer.Not sure what to think..no mention of bone liver or brain concerns.

    I do have a follow up with my oncologist in 10 days to go over results but it is hard waiting.

    What does SUVmean on pet scan?

    Thanks.. a lot concerned and a little scared

  • specialk
    specialk Member Posts: 9,221
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    Sorry you are in a worrisome position - I have been there, but thankfully had no resulting malignancy. SUV means Standardized Uptake Value, and is a means of measurement of how much of the tracer is gathered that factors in the amount injected and the size of the patient. Creating this standardization helps remove variation in reporting. I believe there are differing SUV threshold numbers depending on which body part is being looked at. I would guess that the number noted for the lymph node on your report means that things need to be investigated but there are benign reasons that different areas of the body may have increased uptake. In my case it was multiple types of inflammation that caused an abnormal bi-lateral chest result. Wishing you the best, hang in there.

  • meme5
    meme5 Member Posts: 43
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    Thank you for your response.
    After looking at my pet report again I realized that the radiologist did not compare my pet scan to a CT scan of the neck lymph node back in April (which was normal). Not sure why. I also had an endoscopy of the stomach three weeks ago (which also caused my throat to be sore for several days) and that was also normal.

    Since posting I have read that SUV numbers are not the definitive factor to determine cancer. Since there was nothing about metastisis in liver, bone and lung I am hopeful this is a whole lot of nothing.

    Are there any good websites to read more about SUV in a pet scan? I probably should stay off of the internet but it is hard

  • meme5
    meme5 Member Posts: 43
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    So today I saw my oncologist again regarding my pet scan 2 weeks ago. He said he is concerned about the SUV being 7.2 on a liver lymph node. He said the liver biopsy I had three weeks ago was inconclusive (even though the Gastro P. A. told me there was no sign of malignancy). and that he now wants me to have a laparoscopic liver biopsy by an oncology surgeon who he has fast tracked me to in order to get more conclusive results. He is setting it up for me to have scheduled but am waiting for them to call me.

    He said the SUV of 7.2 on the pet scan is concerning but cannot say it is or isn’t cancer because it is not in a high range but not normal either.So now I am back to the waiting game again which is causing me a lot of anguish as might be expected. Have any of you had a laparoscopic liver biopsy? And what the heck is with these SUV pet scan numbers being inconclusive?!

    I am scared. I thought this was behind me. Now I have to go out of town for the laparoscopic procedure because I live in a small town and no one locally does them. I hate waiting and I hate cancer.

    Does anyone have any experience with this SUV stuff or laparoscopic liver biopsy

  • specialk
    specialk Member Posts: 9,221
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    Hi, me again. Sorry the waters are still muddy for you, I know this is stressful. I think because there are multiple reasons for uptake on PET scans sometimes things are not clear cut. Also, even though there was no sign of malignancy, I think your MO is doing his due diligence to be sure about this. I assume that is the reasoning behind the recommendation for the additional biopsy. My BFF has never had breast cancer, but has a history of quite elevated liver values, with no obvious underlying disease. She has had every type of liver specific imaging, an extensive panel of blood tests trying to rule out everything that could cause these elevated values. Her gastroenterologist finally decided that she needed a laparoscopic biopsy since the values persisted and there were no answers from her blood tests. I flew out to CA to help her since she is single, and will say that the procedure was easy for her - she just had to take it easy for a few days afterward - she is normally very active and participates in multiple sports each week. Hope this is helpful, and wishing you the best - I hope you have good answers soon.

  • meme5
    meme5 Member Posts: 43
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    Thank you for what feels like hope. Waiting is extremely hard.

    I am angry that three weeks ago the Gastro P.A called me to say there was no malignancy on the liver biopsy I had only to have the oncologist tell me yesterday that the report also say specimen unsatisfactory meaning they did not get enough tissue sample. That coupled with the pet scan showing a 7.2 SUV uptake which he said is concerning.. this we are moving on to a laparoscopic biopsy. I have had a laparoscopic hysterectomy 25 years ago but that took over 3 hours. I don’t think a laparoscopic liver biopsy should take long and I am hoping it is out patient because I will have to go 100 miles away to have it done. Am waiting for phone call to set up at this time.

    Do you know what is the highest to lowest number on SUV uptake on a pet scan

  • specialk
    specialk Member Posts: 9,221
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    I would only be guessing on the range of SUV for a liver PET, or looking at articles on Google, and I would not want to give you bad info. There is a thread on this site where you could possibly ask those with liver mets, I will link it. Do you have a portal where you can message your MO and ask this question? I would want that answer to come from him/her indicating what the threshold is for their concern, and what they usually see if there is a liver problem. As far as the biopsy itself - my friend was only there for a couple of hours total, and it was definitely outpatient, but she was still groggy and certainly could not drive. She came home and napped for several hours immediately afterward, but then felt fine. Just had to stay quiet for a few days afterward - which for her meant no cycling or soccer. I believe we did take a walk - several miles, and she felt fine.

    https://community.breastcancer.org/forum/8/topics/783594?page=481#post_5486729

    Edited to add - my friend has had every test under the sun, but her liver numbers have remained abnormal, although steady, for years now - no explanation. Her docs just monitor her annually. She just recently had abnormal A1C readings for the last couple of sets of labs, but normal glucose - weird, but I guess it happens. My BIL is a gastroenterologist and said some people just "run hot" and in the absence of supporting labs indicating a disease process it is what it is. I called and chatted with him before her liver biopsy because I wanted his opinion. Hoping you have a benign reason for the PET result.

  • myshadow
    myshadow Member Posts: 40
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    If you recently had a biopsy, the SUV lighting up on your PET scan could be due to inflammation from the procedure. BUT - as always with breast cancer it is best to have the necessary tests so you know for sure what you are dealing with.

    Sending good vibes your way hoping it turns out to be nothing concerning.