I’m not generally a worrier but I have been worreting on for the last 3 days since my oncology consultant phoned me at around 8pm. He said they found something on my liver, ? a cyst, at the radiotherapy prep CT scan and want to investigate further asap. I had CPR from wide excision lumpectomy following chemo and a couple of nodes were downgraded (which I can’t get an adequate explanation for even though I have my histopathology report and am a trained nurse). He was obviously non committal when I asked if it might be malignant. (Diagnosed Dec 2023, HER2pos, hormone neg, 5 rounds chemo, surgery and continuing phesgo.) Has anyone else experienced anything similar and what was your outcome?
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I have a different cancer so treatment options are different, but my story shows there can be hope despite what is obviously a devastating and unexpected diagnosis. Wishing you all the best.
I had what was thought to be early stage TNBC. No lymph nodes involved. WLE followed by 4 EC and 12 weeks Paclitaxel. Part way through this I was hospitalised with diverticulitis. CT scan done, confirmed the diverticulitis with an incidental finding of a cancerous deposit on my liver. It was confirmed to be a TNBC secondary, assumed to have travelled there through the blood (I had vascular invasion at the breast tumour site).
Initial treatment was microwave ablation. That was unsuccessful. I then went on Pembrolizumab plus NAB-Paclitaxel and got a good response but had to stop due to a serious immunotherapy related adverse event that caused kidney, thyroid and lung damage. I then had another ablation procedure and have been in remission since February.
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Hi,
Yes I had a similar experience, although my BC had spread onto my lungs through lymph nodes at the start. During one of my many routine CT scans I noted on the copy of the report sent to me that I quote “a lesion was noted on my liver” when I confronted my team they were very non committal and I could never get to the bottom of it. Eventually after getting more scans with the same they told me that it could be fatty tissue. My problem was that by calling it a lesion this made me think the worst. I completely understand your worries I would be the same, however, there are other things that it could be rather than the worst, fatty tissue whilst not great is better than a BC met. I really wish they would be clearer on this, it’s so unnecessary to put us through such worry. My oncologist didn’t want to put me through a biopsy and tbh I didn’t really want to have one. My own story is long and hard but please take heart I’m here 15 yrs later living with BC on my miracle drug herceptin for life. Hope you get some answers soon. Xxx
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That must have been difficult to deal with, having that news over the phone. With regards to cysts, I’ll briefly share my experience. They found cysts on my pancreas - apparently a lot of people have cysts and don’t know about them. We have so many scans don’t we, that all these things are discovered but may not be a problem. Mine aren’t bothering me. I also have stones in gallbladder. I imagine your Dr wanted you to be prepared for further tests - for me it’s meant ultrasound and different blood tests. It doesn’t mean that cysts are cancerous but they want to be thorough and rule this out. Why not write down all your questions and concerns and get answers at your next consultant appointment…then try not to think about it till then- easier said than done, I know. Hope all goes well! Ruth x
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I’m sorry for what you’ve had to go through but very reassured you are still with us. Herceptin is amazing - I’ve just read a book called “Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer” by Robert Bazell which documents the very many struggles Dr Denny Sloman went through to get the drug through clinical trials and the brave women who took part in them. It makes me feel so lucky to benefit from treatment.
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Wow. What a lot to go through. Hope it stays in remission for you Thank you for replying.
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Thank you Ruth. I’m hoping it’s a simple cyst but awaiting a CT scan. I got the impression it was urgent but here I am 6 days later and heard nothing so feel less worried. I have my next Phesgo appt tomorrow so will ask them to check if a scan is on the horizon.
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I have cysts on my liver that are mentioned in every ct scan and another lesion that they note as fatty infiltration. I have had four PET scans and they are never noted on them so they are just left alone. My oncologist says many people have liver cysts and when I questioned him about mine, he was 95% sure they were just cysts.
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Hi Sarah Louise, 15 years is wonderful, what happened to your lung nodules, did they disappear with treatment?
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Hi Deb,
Thank you and yes it is miraculous. I am still on Herceptin for life and should still be on Tamoxifen but due to side effects came off of it years ago. Quality or quantity of life for me. No mets showing on continued CT scans to date, however my oncologist told me they are probably still there but just not showing up on scans. My lungs lit up like a Xmas tree initially, not my words but a registrar’s words. The herceptin has been keeping me stable all these years and works beautifully. I pray it keeps working for as long as possible.
By sharing my story I wish to bring hope and the truth that cancer can be treated as a chronic condition. Xxx
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Just to update you I was in the hospital yesterday so went to the xray dept to check if they’d received the referral and I was given an appt for next Tuesday - CT scan Thorax, abdomen and pelvis. I was initially shocked but I’ve come round to thinking the scans are having a good look round my innards to identify any mets that may be there. Hopefully not! Might as well have a look at the whole lot!
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Hi,
Just hoping you got on all right with the scans. Got everything crossed for you. X