Connect
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!
Like
Helpful
HugInterested in more discussions like this? Go to the Breast Cancer Support Group.
Connect
@meme5 Can you call the doctor tomorrow who ordered biopsy? Is that your oncologist? It could help you to feel better before your appointment next week if your doctor could interpret the pathology report for you.
-
Like -
Helpful -
Hug
1 ReactionI can try. He is a surgical oncologist that I was sent to by my oncologist here at home. The procedure I had was not done in my hometown of Brunswick, Ga. I needed a larger hospital . I was sent to Univ of Florida Shands in Jacksonville. I have only seen his PA once who told me the surgical oncologist wanted the ultrasound biopsy done as opposed to a laparoscopic biopsy because it was less invasive and they could get the same tissue samples without the surgery. I am going to send a message to the surgical oncologist for clarification.
-
Like -
Helpful -
Hug
3 ReactionsHi @meme5, it is a double-edged sword to receive a pathology report in advance of meeting with your doctor. A biopsy report is only one piece of the diagnostic process. The results must be put together with the other diagnostic testing (medical history, imaging like a CT scan, blood tests) to get the complete picture.
Focusing on individual terms in the pathology report doesn't consider the whole picture. So I offer this information as information only, not specific to your report or diagnosis. The following article from Cancer.net by the American Society of Clinical Oncology (ASCO) helps to understand terms used in biopsy reports.
- After a Biopsy: Making the Diagnosis https://www.cancer.net/navigating-cancer-care/diagnosing-cancer/reports-and-results/after-biopsy-making-diagnosis
In the article, atypical is defined as:
"Atypical: Cells that are not normal but are not cancerous. Atypical cells could become a cancer over time or may increase a person's risk of cancer."
This underlines the need for interpretation. Furthermore, you mention that the liver issue may have been there for a long time. The biopsy and further imaging studies will help rule out other liver-related issues and know what you're actually dealing with.
Heading into a weekend is a hard time to have to wait for the appointment with your oncologist. Do you have a patient portal where you can ask about your tests or ask to talk with a nurse navigator or social worker?
-
Like -
Helpful -
Hug
6 ReactionsI just sent a message to my oncologist who ordered the biopsy and asked for clarification about the report. Hopefully I will hear back tomorrow.
Thank you for the other info from the ASCO..
I have had multiple liver cysts for at least 15 years that I have been aware of and never had issues. And by the way also have a rather large lipoma in my lower colon for 15 years. no problems there either. Regular colonoscopies all fine.
Anyway I am sure my oncologist here at home will review everything thoroughly. I see the oncologist at Shands on Sept 1st for FU consult to the biopsy and my oncologist here at home on Sept 7th for whatever comes next.
-
Like -
Helpful -
Hug
6 ReactionsI am glad you sent a message and if you haven’t heard tomorrow, I might suggest a call to ask for a call from a nurse or the doctor for some clarification of the report. This is a difficult report because of the “rare” and “non specific origin”. It states that resampling and imaging correlation are recommended, to me this says there is more testing to be sure about what this is.
Try not to make yourself crazy with what ifs and maybe’s. I know from experience this is easier said than done. This is usually when I find a complicated knitting pattern or take on cleaning projects. I also try to push worry time into a 30 minute a day box. Then I can say nope I have to put that aside until that time. This is how I got through a few scares that turned out well and how I dealt with the return.
I took 6 rounds of TAC, the same drugs as you just in an all in one format, and I can tell you nothing has ever been as hard as that. Sooooooo…….you got through that, and you got this.❣️
Please feel free to contact me here or in a message if you just need a pep talk. 😊
-
Like -
Helpful -
Hug
7 ReactionsThank you for your words of wisdom. They are so helpful!
I am trying really hard to stop thinking about the what ifs. I do spend my time volunteering at our local hospital and making heart pillows for breast cancer patients. But I am divorced and live alone ( usually I am happy living alone) so when I am home is when the what if thoughts start. I am trying to do some breath work as well.
I am already writing down my questions for my follow up on Thursday with the surgeon who did the biopsy. My biggest fear is they will want to do surgery to take the node out when they do not have a clear answer if it is or is not cancer. I don’t think they know. Other tests periodically I am willing but my head swirls just thinking about being cut on because the last surgery I had for the breast implants I wound up with blood clots in my lungs and in the hospital on warfarin and almost dying. So surgery scares me.
I also was sent by my medical oncologist to this large teaching hospital for the biopsy procedure (Shands in Jax) because it isn’t done at my local hospital. My medical oncologist has a personal relationship with the surgical oncologist he referred me to and spoke with him personally about me. So I consider the surgical oncologist as a second opinion. After seeing the second oncologist this Thursday I will go back to my medical oncologists here at home (very experienced and trustworthy) to decide where we go from here based on the surgical oncologist recommendation.
Am I doing everything right? I keep wondering if I should be lining up yet another oncologists to speak to or not. But in my heart I know what I am looking for is an oncologist to say “ stop worrying this is nothing”. Right now that’s not possible. I keep second guessing myself. I don’t really have anyone to bounce this off of. My daughter and son are so supportive as well as my sister who lives in another state. No one has answers ..just words of encouragement while being patient with myself is exhausting. Thank you for letting me rant!
-
Like -
Helpful -
Hug
4 ReactionsRant away!! Sometimes that is just what we need, and this is a safe place for that.
I can certainly understand your fear of surgery after what you went through, but if they need to take it…………………I know it would be scary, but I would find it preferable to remaining in “what if” mode.. I find it a lot scarier, constantly wondering if it is growing again. Relate these fears to your surgeon, I found my surgeon to be pretty understanding about fear. I would also also think they would want to avoid terrible surgical complications.
I think you have covered your bases for second opinion. I am waiting with you for some more understanding of this report, and I have all my fingers and toes crossed for some good news. 💕
Did you put that call in or are you patiently waiting?
-
Like -
Helpful -
Hug
2 ReactionsI called and left message as well as sent an email to the surgeons office. They say give 48 hours for a response. I did that yesterday morning and I saw where my email was read but I have not had a response yet so still waiting.
-
Like -
Helpful -
Hug
3 ReactionsI have spent the weekend talking with two long time close friends, both breast cancer survivors, my therapist and calming myself down enough to listen to my intuition (gut) and my feelings after reviewing all my medical info. ( I still have not heard from the surgeons office at Shands.. maybe tomorrow)
I have realized that the decisions I make regarding moving forward with the not knowing (Atypical diagnosis) have to come from a place that brings me peace about taking care of my body and doing the right thing for me and my emotional and physical well being.
I will go to my follow up appt on Thursday with the surgeons office and then my medical oncologist here at home on Sept 7th to discuss results and where we go from here. But I have realized that given my history of pulmonary embolisms in the past with surgery, the fear of being opened up surgically to remove something that they do not even have a name for, disrupting the small lymph node that may be nothing and other surgical complications that could arise from something that has never given me problems whatsoever is not a risk I am willing to take. I am more than willing to do scans and clinical follow ups and possibly another biopsy if deemed necessary to keep an eye on what is going on.
I could not continue going over all the what ifs of surgery. If that is even something they suggest. Making this decision has calmed my mind and feels right for me. I found a stone at a local gift shop this weekend that had the word PEACE engraved on it. I bought it and put it on a table in my home where I can see it all the time. Peace comes, I believe, from a place inside us when we know we are following our best instincts and coming to decisions that feels right for us.
Today has been a better day than I have had in quite a while.
-
Like -
Helpful -
Hug
7 ReactionsI'm glad that you've found a perspective that's of comfort. Please remember though that your decision is subject to review (by you) in the light of any new data, change in viewpoint, sudden inspiration or other input. My 'decisions' with respect to breast cancer treatment, while each felt correct at the time, did evolve further and each was an improvement. Decisions are time-sensitive, similar to snapshots at a point in time, and can be fine-tuned and still "the right" decision. Enjoy the peace of finding a place from which to move forward as it can make all the difference.
-
Like -
Helpful -
Hug
4 Reactions