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It’s always something isn’t it?

meme5
meme5 Member Posts: 43

Hello…I just discovered this forum and so glad I did.

I am 74 and a nine year survivor of invasive lobular BC stage 2B with three lymph nodes involved. In 2013 I had a double mastectomy with reconstruction, 8 rounds of chemo ( A/C 4 rounds/ taxotere 4 rounds) and 5 years of Famera. I have been great ever since.

Wellllllll…….in April of 2022 I wound up in the ER for a stomach bug ( gave me antibiotics and it cleared up) and they did a CT of abdomen which also showed liver cysts which I have had for many years, no problems. That led to an MRI, endoscopy, biopsy of lymph nodes near liver showing inflammation (inconclusive) pet scan showing some SUV uptake in same biopsy area. Was sent to a oncology surgeon in nearby city to have an endoscopic ultrasound to obtain tissue sample of lymph node in area of concern. Scheduled for August 22nd. They also did tumor marker blood work. Two tests were in normal range and two were slightly elevated. My main oncologist does not do tumor marker tests because he said they are unreliable. These tests were done by surgical oncology office who will do endoscopy.

I feel great overall. My weight is within normal range/ BMI good and I walk 5days a week and have not had one symptom that anything is wrong.

I will be 75 in December and until now thought all this cancer crap was behind me. I do have arthritis in knees and back but kept at bay by walking. I also meditate and read a lot.

At 74 I know stuff goes wrong but I feel like I have been thrown back into the cancer ring, lots of old triggers from treatment back in 2013. I am divorced and live alone but my daughter does live nearby which is a godsend but she stays super busy with her own family of four sons.

How do any of you cope with the what if anxiety at our age?

As Gilda Radner said “It’s always something”

Any advice or insight is welcome!

Thanks from a worried senior

Comments

  • maggie15
    maggie15 Member Posts: 754

    I'm sorry that you have to worry about cancer again. I agree that you seem very healthy and you are doing all the right things to stay that way. Even though your daughter is busy with her family, I'm sure she would be available to help if necessary.

    At 70 I'm relatively new to the breast cancer world (diagnosed at 69,) but during the last 18 months that was just one of about 8 serious medical conditions I had to deal with all of a sudden. The most painful was a burn over 20% of my body and the most serious was pulmonary fibrosis, a rare side effect of radiation that put me on oxygen and prednisone. My breast surgeon's comment at my first post surgery mammogram was that I was like a car whose warranty had expired. When my lungs stabilized my pulmonologist admitted that he hadn't thought I would see my next birthday. However, I kept teaching high school math through all of this; my students would have had no teacher, it was a great distraction, and it made me focus on what I was capable of when things were going wrong.

    Like you I walk 3 miles a day, eat well, meditate and read. I just retired on my pulmonologist's advice (covid could kill me.) Walking keeps arthritis at bay and I take gabapentin at night so nerve pain doesn't keep me awake, but I still consider my health good when compared to others my age. Thanks to everything that went wrong I had CT scans of my brain, head, neck, chest and back as well as an upper GI endoscopy. A lot of things that shouldn't be there showed up, but currently nothing is life threatening or bothering me too much so I'm going to let the doctors do their "surveillance."

    Some people take anti-anxiety meds if they need to, but I guess I just ran out of worry. Hopefully your endoscopy will not find anything serious. However, if there is something wrong, there have been many treatment advances over the past nine years. It's tough when you live alone and have nobody to talk to, but this forum gives you a place to air your concerns and find out that you are not alone. I live with my 78 year old husband, but discussing anything medical really upsets him so I don't.

    Best wishes for good results from your procedure. Let us know how it turns out.

  • meme5
    meme5 Member Posts: 43

    Wow you have had your share of ups and downs too. I hope you are getting stronger each day.

    I was just divorced about 7 months ago after 22 years of marriage. I was married at the time of my original treatment. He was very good to me during that time as far as getting me to Dr appts, etc but really did not know how to be comforting. I divorced him in Jan for emotional and verbal abuse and have not regreted it. That being said facing this new medical issue of possible cancer has thrown me a curve ball in the emotional dept because it would feel really nice to have someone sit on the couch , hug me and say that everything will be ok. So I am learning to do that for myself. I do have a wonderful therapist that I see regularly too.

    I am trying to remember that not all suspicious areas are cancer and that a reoccurrence is not a death sentence. I should learn a more definitive answer next week after my endoscopy.

    I also have read that tumor marker tests can be inaccurate sometimes or show false positives. My own oncologist does not use them.

    Hurry up and wait is a mind game when it comes to cancer results and I have to remind myself hourly that I can handle this.

    Thank you for your encouraging words and my best to you

  • meme5
    meme5 Member Posts: 43

    Hello again… I received the pathology results online from my recent biopsy. I have not yet spoken to my oncologist about this report.. that will be next week. The final diagnosis states: Atypical.. Further down the report it states under comments: The specimen examined has a rare cluster of atypical cells of nonspecific origin; resampling and clinical and imaging correlation is recommended.

    I am not sure what to make of this report. It still leaves me in the dark. It did not say malignancy was found but I think it means could become cancer in the future. I don’t have previous scans from previous years because this area in a lymph node near my liver has never been of concern, biopsied or scanned.

    I am grateful it did not specifically say malignancy found. But this report still leaves a lot of mystery which is maddening.

    Have any of you had a biopsy report that came came back with a diagnosis of Atypical? If so what kind of follow up, further testing do they do?

    Still worried and concerned

  • maggie15
    maggie15 Member Posts: 754

    Meme5, it's too bad you did not get a straightforward benign report. Sometimes, a biopsy does not show enough to classify what is atypical. It sounds like they have recommended another biopsy so that they can get a better sample and figure out what the atypical cells are.

    I have radial scars left near the site of my tumor (they were on the margins.) My breast surgeon said that they are precancerous lesions but are still benign. Therefore, they leave them alone until they become malignant ( if they ever do.)

    As you said, it's always something! Hopefully your oncologist can give you more information.

  • meme5
    meme5 Member Posts: 43

    Well I saw the surgical oncologist today as well as his PA. Also the nurse navigator and social worker were in the room. Not sure why?

    Bottom line: He said the Atypical diagnosis was too uncertain for him to just do scans as follow ups. He said there are several lymph nodes involved but the biopsied one they did was the largest. The pancreas is clean. He said rather than rush into surgery he wants to do another biopsy, same as before, same Dr (although he said if I wanted a different Dr to do the biopsy he could send me to Gainesville.. I said no). So he wants another endoscopic ultrasound biopsy to see what results we could get. If it comes back Atypical again then we need to think about surgery to remove the lymph node to see what we are dealing with. He does not know what this is and is concerned enough from the SUV uptake of 7.2 on my pet scan to not just watch it with future scans. So I will have another biopsy hoping for a clearer result.

    It is scheduled for the 7th but trying to get it moved to the 2nd, this Friday.

    He did say he did not think it is related to my previous breast . He did say the tumor marker tests were very subjective.

    Sooooo... I am tired of dealing with this and in a way was glad to have someone else tell me (Dr) what is the next thing to do to get to the bottom of this.

  • maggie15
    maggie15 Member Posts: 754

    Meme5, I'm glad you got some kind of answer even though it is not definitive. Hopefully the second biopsy will give you good news. I hope your appointment gets moved up so you can find out what's going on sooner.

  • meme5
    meme5 Member Posts: 43

    My second biopsy came back today…

    Malignant in portahepatic area with rare group of malignant cells present. It also states in the comments “ a metastatic breast primary is favored but due to scant nature of cells and location and hepa positivity the liver origin is also in differentials”.

    I do not know where I go from here but I do have a follow up appt with my surgical oncologist on Sept 20th.

    Do they stage Mets to liver? Surgically remove? Treat with chemo? I really do feel physically fine with no symptoms.

    I don’t know what to think or where to look for answers

  • maggie15
    maggie15 Member Posts: 754

    I’m so sorry about the second biopsy results. There is a thread in the stage iv section called “How are people with liver mets doing?” If you post there someone would probably be able to answer your questions.

    It's a good sign that you are feeling well. Hopefully your oncologist will have helpful treatments for you. Stay in touch.

    Maggie


  • lw422
    lw422 Member Posts: 1,372

    Hello Meme5 and sorry about your new diagnosis. I'm certainly no expert, but staging will depend on a lot of factors, including whether or not the cancer is a metastasis of your original BC or simply cancer of the liver. There is a long-running thread in the Stage 4 section of the forum about liver cancer from metastasis. That thread is here... https://community.breastcancer.org/forum/8/topics/809420?page=1

    If your new cancer is not a metastasis, then the info in that discussion may not pertain to your situation. I hope all your questions can be answered to your satisfaction and treatment will be tolerable for you. My best wishes to you.

  • meme5
    meme5 Member Posts: 43

    I received an Addendum to my path report today stating 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?

  • meme5
    meme5 Member Posts: 43

    So 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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  • maggie15
    maggie15 Member Posts: 754

    Meme5, Better to do another biopsy and get the diagnosis right so the treatment is correct. My local hospital did not get my tumor markers right on my biopsy. The cancer center redid them and found that their pathology was correct. I live in the boonies so I travel if I need more than simple care.

    I have never had laparoscopic surgery but my daughter has. It took her about a week and a half to recover. She thought it was easier than opensurgery. Good luck with the procedure.

  • meme5
    meme5 Member Posts: 43

    Thank you for responding. I had laparoscopic hysterectomy 25 years ago and recovery was easier than open surgery. I just want them to get a definite diagnosis this time as it has been four months of tests, scans, etc and 2 Gastro ultrasound biopsies with no clear answer. I am so tired of the testing and waiting for answers

  • alicebastable
    alicebastable Member Posts: 1,932

    I had a laparoscopic nephrectomy four years ago for kidney cancer, same year as breast cancer. I was in the hospital for just one night. It hurt like hell for about a day and a half, then gradually felt better. Walking and hydration really helped.

  • meme5
    meme5 Member Posts: 43

    I just received my path report
    In porta hepatic lymph node: Positive for metastatic carcinoma with aprocrine features
    Tumor cells are positive for GATA3 and CK7 and negative for PAX8, GCDFP and mammoglobin. Although breast origin is favored, GATA3 is not specific for breast primary.
    Liver wedge is benign hepatic parenchyma with no metastatic carcinoma
    I am not surprised at these results but don't understand the GATA3, CK7, etc or what it means for outcomes or what treatment I will need.
    Any ideas?

  • maggie15
    maggie15 Member Posts: 754

    Meme5, I'm sorry the path report was not good. At least you have some answers now and will be able to begin treatment to slow things down. GATA3 and CK7 are markers which will help your oncologist decide the best course of action. I don't know how liver mets are treated, but I'm sure there is a thread in the metastatic disease section where you can ask others who are dealing with this. I hope things work out as well as possible.Virtual hugs for you. Maggie