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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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Today I had my follow up visit with the surgical oncologist and his PA.
He told me that my Atypical diagnosis from my biopsy of the lymph node was not conclusive enough for him to make a diagnosis. That the lymph node is one of several they are concerned about. The one they biopsied is the largest. (about 1 inch long). Therefore they did not want to rush into any unnecessary surgery so they are scheduling me for another biopsy same as before to see if they can get a more definitive result. If the next one comes back Atypical he said it is of enough concern that they would want to do a surgical biopsy in order to completely remove the lymph node. He also called the Dr who had done the biopsy and questioned if the pancreas was involved and he said it was not.
He did not seem to push surgery yet but stated that this is concerning to him because of the SUV uptake of 7.2 on my pet scan of this area.
He did not think it was prudent or a good idea to take a watch and see approach with future scans because we need a definite answer as to what is going on so they can decide what if any treatment is needed. He did not think it was related to my breast cancer.
This is exhausting! In a way I was glad to comply with the biopsy do over because it felt like I was letting someone else look out for me instead of me trying to figure out what to do.
So I am waiting on a call now to reschedule the biopsy.
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6 ReactionsSorry...I am thinking about you.
I’ll be thinking about you. Keep your positive attitude going as it’s still a question. 💕
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1 ReactionSo I had a second biopsy this week and waiting on results. I do have the written report from the Dr who did the biopsy-same one as before which he wrote immediately after the procedure. In the report he states the lymph node is suggestive of an intraductal papillary mucinous neoplasm or IPMN for short. The report also states the head, middle, neck and tail of pancreas are clear.
I am confused! If the pancreas is clear and clean how do they think this is an IPMN which is associated with the pancreas?
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1 ReactionI just received the results from my second biopsy… Malignant in Portahepatic area. I am not totally sure where this area is but I believe it is near the liver. It also states a metastatic breast primary is favored however liver origin is in the differentials. Additional stains are ordered. I still have no symptoms.
I do not know where to go from here in my thinking. At some odd level I am relieved to have a diagnosis but also scared. Do they do surgery to remove the lymph node? Chemo? What are survival rates? So many questions. I have a follow up appt on Sept 20th with the surgical oncologist.
Worst fear come true!
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5 ReactionsMy second biopsy came back as malignant. But they do not know if it is metastatic breast primary or liver origin or possibly lymphoma since it is a malignant lymph node.
Today I received an addendum to my specimen with the following:
Glypican-3 (marker for liver origin) Negative
Arginase-1 (marker for liver origin) Negative
The earlier biopsy report said:
CK7, GATA3, Mammaglobin, Hep par 1 we’re all positive
ER was negative
Can anyone explain what this means?
Thank you for any insight. My next follow up with surgical oncologist is on 9/20.
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5 ReactionsHi meme5. I have no knowledge that can further your understanding but it’s ludicrous that you receive such information without an opportunity for an explanation!
I’m sorry that you have to wait so long.
I’ll be thinking of you and hoping for the best possible outcome. 🌸
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6 Reactions@anjalima I totally agree with your post. The dr should have had the oncologist surgeon lined up for an immediate appointment for explanation etc. I know in this day and time sometimes it’s not possible but for @meme5 schedules could be shifted I would thinking. For peace of mine immediate contact should be scheduled. Prayers & blessings to you @meme5
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5 ReactionsExactly!
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3 ReactionsI can give a little translation of terms but it won’t replace a doctor consultation because it doesn’t explain what you are reading.
The top two are pretty self explanatory. Two markers for liver cancer origin negative.
Your previous biopsy it is a little more confusing.
It says it was positive for breast and liver markers.
Also it was estrogen receptor negative. Meaning not driven by estrogen.
As we have discussed in other conversations. Markers aren’t always an answer. They are just little clues that lead our doctors to a diagnosis and treatment plan.
Try not to make yourself crazy while waiting. I know that is easier said than done. Most of us here have played the waiting game, and it is never easy.
I read an article today about a research study that showed a one hour walk in nature can reduce stress and fear. I agree! If you can get out of your head for a period of time, it might help with this. I will be waiting with you and crossing all my fingers and toes.
Do you have stress coping skills you like to employ?
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