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Reccurrence?..Waiting on biopsy results
I had invasive lobular carcinoma stage 2B, 2.1 cm tumor with 3 positive lymph nodes in 2013 at the age of 65. Had double mastectomy with reconstruction, silicone implants, did 4 rounds of A/C and 4 rounds of taxotere. Then 5 years of Famara. Always had great reports until I wound up in the ER this year, 2022 in April for a stomach bug I caught while traveling. They did a CT scan in ER of abdomen area and said I had pancolitis. Put me on flagyl/Cipro and I recovered.
The CT also showed liver cysts which I have had and known about for at least 14 years. No problems with them at all. That led to an MRI, liver biopsy (inconclusive..not enough tissue obtained) ultrasound, endoscopy and pet scan. All my organs look fine but the pet scan had an uptake of 7.2 on a lymph node in hepa porta (not in the liver but near it). So this week I had an upper endoscopy ultrasound where they were able to obtain tissue samples of the lymph node in question. The Surgeon who performed it told me afterwards that the lymph node is not connected to any other organ. Just sitting there by itself and encased. It is both fluid filled and solid. I also had tumor markers done. Two came back normal and two came back slightly elevated. My oncologist does not do tumor markers because he says they are unreliable. They were ordered by the surgeon. The surgeons report said suspicious for adenocarcinoma from the breast!
So here I sit waiting for results. They will call me but it takes 3-5 days. I am a nervous mess.
I am trying to stay busy, read and meditate. Not knowing what is next is making my heart race and stomach hurt.
I am 74 now and in great health. Walk 5 times a week, volunteer, read , etc but am divorced and live alone near my daughter and her family.
I really don’t want to do this cancer shit again and I am scared. Have any of you had cancer scares that turned out to be nothing? Or if your cancer returned how did you deal with it?
I feel overwhelmed!
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Thank you for your comments.
Yes, I walk almost daily.. big help. Along with following medical advise I also read a lot of mindfulness stuff, do meditation and journal. I also have a great therapist. I volunteer at my local hospital as well.
My surgical oncology team at Shands in Jax explained to me recently that they have no control over reports that get released from the gastroenterology specialist or pathology that released the results to my patient portal. Maybe they should but they don’t sadly.
The surgical oncologist I see at Shands who reviews the path report, decides what steps to take next. He is highly skilled and specialized with 20 plus years experience in cancer of the liver, pancreas, esophagus, etc . My tumor or lymph node is in the porta hepatic area near the liver.
I was offered an appt tomorrow at 4:30 but declined because my daughter is out of town and I want her with me for support plus I would be driving bing interstate 95 at rush hour for an hour and a half each way. I did not want to put that additional stress on my self of going alone. So my next appt is Tues 9/20 to see where we go from here.
Every day is a day of discipline to stay focused on the moment in front of me.
Perhaps my winding up in the ER back in April was a good thing which is how this whole experience started.
It’s just with each new report it is hard not to panic but I am trying.
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6 ReactionsHi Meme5 … the new freedom of one’s own medical information act ( forget actual name) has legally required all path reports to be posted to portals as soon as they are released by pathology. Sometimes we see it before our doctors do.
I like this advance in patient information but I don’t go to the portal if it’s an area that I feel needs my health professionals to sort for me. It’s a tough discipline but it sometimes works.
I’m VERY glad to hear you were offered an early appointment and I think you made a wise decision to wait until you had the support of your daughter to help you through your medical decisions.
Best of luck and keep on visiting all those wonderful stress reducing tools you have cultivated.
I’ll be thinking of you. 🌸
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6 ReactionsI just wanted to share with you something I did yesterday. Our internet provider had our internet down all day yesterday. We are also waiting on some test results to see if my husband is going to have to go off his chemo for a while because of something on his legs. This is all pretty distressing to me. I turned on my music and started knitting a charted color work hat.
Wow, the worry just melted away for about four hours until the teenager across the street came and said it was time for her to come help with barn chores. I haven’t let myself just lose that much time in as long as I can remember.
Do you knit, or paint, or some other creative hobby?
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6 ReactionsYes, I actually make heart pillows for breast cancer survivors. I have been doing this for about 8 years . I also read a lot, play at the piano and sometimes color in coloring books for meditation with colored pencils. That in particular is calming.
I am starting to look into affirmations as well. The hardest part of my day is when I first wake up and realize I have cancer again.
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7 ReactionsSo today I again met with the surgical oncologist at Univ of Fl Shands. He said that the last biopsy is indicative of either metastisis from original lobular breast cancer, lymphoma or liver cancer. Even though they got a lot more samples and did stains of what they got it is still not clear cut. So they are scheduling me for laparoscopic surgery of the lymph node to be done by the surgical oncologist. He will take out a large enough portion (which the endoscopy could only get small samples) that pathology can determine exactly what kind of cancer this is so we can then move on to treatment after healing from surgery.
I was hoping for a definitive answer but am not surprised that they need to do surgery for complete answer. So surgery will be scheduled in the next 2-3 weeks. I will have an overnite stay in the hospital and then home to heal and wait for an answer.
I am meeting with my medical oncologist today just to touch base with what’s going on. Any follow up treatment will be done by him here at home after surgery.
How long to recover from laparoscopic surgery? I am in really good health with weight, exercise, etc.
Has anyone else had to go through multiple test, etc to determine their final diagnosis?
So ready to get a final answer so I will know treatment plan.. Ggrrrrrrrr!
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4 ReactionsGood luck with all of this. I am waiting for the other shoe to drop and reading your post is helpful, if painful for you.
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2 ReactionsI have been thinking about you. Have you gotten a date for your surgery yet?
Not yet. They said they would call me within the week.
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2 ReactionsDoes anyone know how common it is to have cancer show up in the body that is not breast related? Also on my path report from the biopsy of lymph node in liver shows negative for ER (estrogen related) and negative for liver involvement. Can the estrogen change over years from positive to negative?
So confusing. I just want to get to the bottom of this and get treatment.
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4 ReactionsMeme5, I don't have a statistic handy for you on how common it is for people to get a second (or third) cancer that is not related to the first cancer. But it does happen unfortunately.
I wonder if the liver biopsy that is ER negative is another indicator that it is not related to the ER+ breast cancer. I know it's hard to be patient. Fingers crossed that the upcoming surgery will put all the pieces of the puzzle together and you'll know what you're dealing with.
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