Breast cancer spread to liver, skull, spine, ribs, hips etc.

Posted by susane1121 @susane1121, Nov 23, 2022

Anyone experience similar?Seeking any advice that can help us get through this. She started with an injection called fulvestrant. I will be getting another injection starting next month I’m taking a ribociclib.
Thank you

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@windyshores

@meme5 this sounds hard. If you don't mind me asking, how did you discover the metastasis? I am 8+ years out from diagnosis and my oncologist doesn't even see me anymore. I am wondering how I will ever know!

Good luck with the Enhertu. I hope you will continue volunteering. I can imagine being scared.

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My metastisis was discovered in April of 2022 when I went to the ER for a stomach bug I caught while traveling. That turned out to be pancolitis (colon) and it cleared up with antibiotics. But the CT scan also showed enlarged lymph nodes in the portahypatic area (near liver but not in it). Then I had multiple scans, tests, MRI and finally had the lymph nodes removed by a surgical oncologist at Univ of Florida Shands in Jax,Fl They identified that it was coming from my original breast cancer. My oncologist put me on letrozole and Kisqali and I wound up back in the hospital for right side pain, nausea, etc They then did a CT of abdomen and found tumors in my gallbladder. They cannot remove the gallbladder because everything is so entertwined with blood vessels etc . So I will be starting IV chemo Enhertu next week. I was hesitant because I am 75 and don’t have anyone dependent on me. But if I don’t try Enhertu I don’t have many other options.

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@windyshores

@meme5 this sounds hard. If you don't mind me asking, how did you discover the metastasis? I am 8+ years out from diagnosis and my oncologist doesn't even see me anymore. I am wondering how I will ever know!

Good luck with the Enhertu. I hope you will continue volunteering. I can imagine being scared.

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That is the problem. I was 23 years cancer free and got no further medical attention except mammograms every few years and none since Covid. I insisted on tumour markers done annually but that also was stopped at Covid. Then last august I was diagnosed with stage 4, mets in bones and liver. Had I known what I know now, I would have insisted on regular scans and on more specific tumour markers. Do put your foot down re getting regular checkups, properly. Somehow over the years we are kind of lulled into believing that we are as good as ‘cured’, specially after such a long time since initial cancer. I would have been aware that I might at some stage get cancer again, being genetically prone, but being told that one is suddenly stage 4 is hard to comprehend. So don’t take the eyes of the ball!!

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I do not consider myself cured whatsoever. I do not have breasts (went flat) so there is nothing much to check and nothing to scan. My docs do not do tumor markers at all- they say they are unreliable. I got 4 opinions on the first go round and am going to go see that 4th doc who takes things seriously.

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@windyshores

I do not consider myself cured whatsoever. I do not have breasts (went flat) so there is nothing much to check and nothing to scan. My docs do not do tumor markers at all- they say they are unreliable. I got 4 opinions on the first go round and am going to go see that 4th doc who takes things seriously.

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Tumour markers can be unreliable, that is true. But a polish lab nurse did a CA15-3 test on me ( here in Ireland you don’t usually get them as they are deemed unreliable) and it was 285 last April ( under 30 is normal). By June it was 365. So I’d say in my case it was prudent to take it further. I had no other symptoms. As you had a double mastectomy you probably didn’t get Radiotherapy which is good. One of the common causes for bone cancer that was mentioned is previous radiotherapy for instance. ( which i had in 1999). I didn’t consider myself as ‘cured’ either as I am aware that cancer reoccurrence is likely when you have had it before. But when 23 years go by and you feel in the best of health - I’m 72 and still work 2 jobs - you do stop thinking of it daily. For me it was like knowing that I’ll die someday, as we all do, being aware it could be today or tomorrow even but in my everyday life the survival instinct makes you experience it more on the rational level. Just saying, better be safe and ask for regular check ups.

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I just found out I have breast cancer in my lungs. Prayers needed and I am in great spirits. I do not know if I will be healed or not. It doesn’t matter because I handed it over to God, so now it doesn’t scare me, sadden me, make me feel sorry for me or depresse me. Either way it goes I’m a born again Christian and I will win. Praise the Lord 🤚🤚🤚

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Hi everyone, first time posting. Grateful for this forum. I had stage 2B invasive ductile carcinoma in 2013. Just diagnosed this March 2023, with stage 4 breast cancer, metastatic adenocarcinoma, spread to bones, liver, lungs.
The pleural effusion, and subsequent thoracentesis, is the most uncomfortable, scary part (and how I was diagnosed, I had never heard of it before, and especially never knew it was a thing related to breast cancer). Doctor has me on letrozole and Ibrance.
The worst side effects are the fatigue and the headaches.
Any suggestions for relieving side effects most welcome!!!

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@karendl

Hi everyone, first time posting. Grateful for this forum. I had stage 2B invasive ductile carcinoma in 2013. Just diagnosed this March 2023, with stage 4 breast cancer, metastatic adenocarcinoma, spread to bones, liver, lungs.
The pleural effusion, and subsequent thoracentesis, is the most uncomfortable, scary part (and how I was diagnosed, I had never heard of it before, and especially never knew it was a thing related to breast cancer). Doctor has me on letrozole and Ibrance.
The worst side effects are the fatigue and the headaches.
Any suggestions for relieving side effects most welcome!!!

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I only have it in the lungs and it's sore when I breathe, but not enough for me to take anything. It does hurt more when I sneeze, but it goes away quickly. The doctor said I can use my Albuterol if needed. I will put you on my prayer list.

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@karendl

Hi everyone, first time posting. Grateful for this forum. I had stage 2B invasive ductile carcinoma in 2013. Just diagnosed this March 2023, with stage 4 breast cancer, metastatic adenocarcinoma, spread to bones, liver, lungs.
The pleural effusion, and subsequent thoracentesis, is the most uncomfortable, scary part (and how I was diagnosed, I had never heard of it before, and especially never knew it was a thing related to breast cancer). Doctor has me on letrozole and Ibrance.
The worst side effects are the fatigue and the headaches.
Any suggestions for relieving side effects most welcome!!!

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I would recommend exercise, whatever you can do. In a counterintuitive way, the more active you are the less fatigued you feel. I try to do daily walks, vacuuming the kitchen everyday 😁, cooking and gardening.

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@littlebit71

I only have it in the lungs and it's sore when I breathe, but not enough for me to take anything. It does hurt more when I sneeze, but it goes away quickly. The doctor said I can use my Albuterol if needed. I will put you on my prayer list.

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Thank you so much for your reply. Yes, I use Albuterol when needed as well.
Had the pleural effusion removed from my lungs yesterday. That procedure kicks my butt, but feeling better today.
Thanks for your prayers 🙏

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@eku

I would recommend exercise, whatever you can do. In a counterintuitive way, the more active you are the less fatigued you feel. I try to do daily walks, vacuuming the kitchen everyday 😁, cooking and gardening.

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Thank you so much for your reply. Def need the encouragement! That's probably one of the hardest parts, because I have been so active. Those are all great suggestions, going on a walk this morning 🌄
Thanks again!

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