Just received my Pet Scan results

Hi everyone, I have unfortunately been on this site for 9 years now. Diagnosed with early stage in 2015. Then had a recurrence in 2022. Yesterday I had a follow up Pet scan and the indication says "New hypermetabolic abdominal, pelvic, and thoracic lymphadenopathy, presumably reflecting metastatic disease." I briefly spoke to my oncologist and he said there are several lymph nodes that are lighting up as well as some fluid around my lung. They are scheduling a node biopsy and going to drain the fluid and test that as well. I am kind of freaking out here just reading that. Has anyone had scan results like this and have it not turn out to be MBC?
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@mvspaulding, we're so sorry you’re going through this. The wait for results can be truly terrible, but only the biopsy and fluid testing can confirm whether it’s metastatic disease. Until then, we're thinking of you, and keeping our fingers crossed for benign results.
Sincerely,
The Mods
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@mvspaulding The testing phase is a very scary ride, and nobody can't know yet, but we're here for you.
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Thank you - maybe the part that is the worst for me is telling my kids once again news like this.
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Hi, all these tests and pathology reports are scary as heck. I had cancer in 2011 ER+PR+Her2- and the only tests I had were a mammo, biopsy and MRI. This time, 13 years later, my surgeon started with an MRI and then my oncologist moved on to Bone scan, CT scan, PET scan, Tumor Markers, Genetic Testing and another MRI. The CT showed enlarged lymph nodes in my abdomen. Those results got me a trip to the PET scan and the Pet scan showed activity in those lymph nodes. I then had to wait almost 5 weeks for a biopsy which in turn showed nothing of interest. No cancer. Perhaps those nodes were doing their job the same time the test was taken. So yes, it can be nothing. I'm guessing when we have had a recurrence they are hypervigilant. I think I was told or read their was a greater chance of mets then a local recurrence. I'm curious, how can you have a left lumpectomy if you already had a left mastectomy? Wishing you well on the tests and hopefully they are simply working nodes.
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hi I pray that you are right and the nodes aren’t cancer. I think that the fluid in lung could also be a lasting side effect of radiation. I did have a double mastectomy first time around. There is about 5-6% breast tissue leftover after that. I’m the lucky one who got a new recurrence in that little bit of breast tissue in my left armpit. They already got me scheduled for this Friday for node biopsy and thoracentesis. Thanks so much for your response.
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I hope your biopsy and treatment went well last Friday. Having this crap come back is awful. I wish they had some better stats on recurrence so we would be better prepared. So many posts I read talk about recurrence rates and they really don't realize they are talking about distant recurrence, not local or regional. I often hesitate to bring up this information since they are dealing with cancer for the first time and sometimes it feel wrong to correct someone. Who knows.
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@mvspaulding thinking of you during this time, keep us posted!
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hi all. Unfortunately the biopsy on lymph node came back positive for cancer. So I am now considered stage 4. Met with my Dr yesterday trying to understand how this happened when I was on Verzenio/exemesthane. He said that the cells can mutate and become resistant to the drugs you are on. So he is testing me for the ESR1 mutation and if that’s positive I will move to taking a drug called Orserdu. Im just so mad and upset, just feel like no matter what I do this is going to get me. I’m trying to stay positive that this test and new drug will work for me. As we did catch it really early. But I just saw my CA27-29 marker test came back and it’s really high. So that’s scary.
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Mvspaulding, I'm sorry you have joined us in stage IV but you have caught it early . I was dx stage IV 11 years after stage 1 node negative bc cancer (oncotype 23 so completed chemo , rads , surgery and 6-7 yrs on femara.
Your onc is on top of it - also should test you for the pik3ca mutation along with the ERS1 mutation.
I've been on ibrance / fulvestrant for 5 years now and doing fine . I have a new, 9 mm spot lighting up but the oncologists don't consider it progression yet, scans next week. We understand that it's overwhelming . Better treatment is always in trials and coming up for us .We are here for you ! I've learned so much from the stage IV boards. No one understands our reality like those of us with the dx .
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thank you. It’s so scary right now but I like hearing stories like yours where you are doing well.
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I was diagnosed in 2006 with stage 2b, 3 tumors largest 2.5 cm, 4 positive nodes. Mastectomy, chemo, rads, tamoxifen 1 year, AI one year, could not tolerate so another 4 years of tamoxifen. 17 years cancer free.
Now I have a recurrence in the chest wall, large (6.9 cm) encircles the 2nd rib which is involved. Inoperable. The rib may e mets, may be from direct contact with the tumor. PET April 21.
I always celebrated my cancer anniversary. After 17 years I thought I beat it. Hopefully it is stage 3 not 4. Can’t seem to find folks in this situation. Just celebrated my 70 th birthday.
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@owensgrandma As a grandma myself, I am just putting up my greatest hope that you have many more years. Keep us posted.
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@owensgrandma - We are so sorry you're facing this recurrence after 17 years. Wishing you the very best with your PET scan on the 21st. We know the waiting can be tough, so in the meantime, we encourage you to stop by often and connect with this wonderful community. We’re all here for you!
Warmly,
The Mods
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Like @tougholdcrow , I'm another grandma. Only 2.5 years of stage 2A before I jumped to stage IV. We're with you 💟
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Thank you for your support. I learned my first grandchild was due a month before my first diagnosis. He was born in the month after I finished chemotherapy and a before radiation. Anticipating him kept me going through it all. I didn’t expect to live long enough for him to remember me, so I had formal pictures taken of us every year. He will be 18 in July. And granddaughter is 12. Grandkids are the best
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pet scan is Monday. I am so scared, but better to know. The uncertainty is almost unbearable
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We're here if you need us @owensgrandma. A lot of us here have been through it.
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PET scan tonight, oncology tomorrow. I’m very anxious, can barely think. Not very patient with folks who ask me for anything. Not myself. I’ll post again when I have digested the news
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my Caring Bridge post today
Best possible bad news
It’s been a difficult couple of days with the Pet scan last night and the oncologist this morning, but we have some answers and a plan.
The PET found that I have a large tumor in the chest wall, and cancer in one internal lymph node.
Good news the rib is not involved, and there are no indications that it has spread to lungs, brain, bone or liver. Still, he considers it a stage 4 cancer because of the size and other characteristics. That means it will be a chronic disease and I will probably be on medication for the rest of my life.
No chemotherapy as the tumor shows characteristics indicating it would be resistant and because I have neuropathy from my previous treatment. The risk of worsening neuropathy vs the benefit just isn’t worth it at this time, but might be later if it is not responding to other treatments.
So, tomorrow I will start an estrogen blocker (aromatace inhibitor). Soon I will see a radiation oncologist and probably start targeted radiation. After that I will continue the estrogen blocker and add a CDK inhibitor, another way to stop the cancer from growing.
These medications have side effects, but everyone is different, so hopefully I will tolerate them. Time will tell. They are expensive, but the hospital has funds to help with the cost.
If the tumor responds I have the possibility of a long life, with treatment. And if they don’t, there are many other drugs to try. I am very encouraged and hopeful. No one cried today, a good sign, lol.
Thank you all for your support and prayers. Special thanks to Paddy for being there, taking notes, asking good questions, and giving me hugs. And once again, I couldn’t do this without John. He is by my side for the entire journey and keeps me going with his love and support and all the small things (and not so small) that he does every day to make my life easier and show he cares.
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@owensgrandma I'm glad it was not worse, and is sounds like you have an excellent plan in place. And hugs are always good!
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Thank you
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Here is to many more years of no tears and yay to no ribs involvement or other organs involvement 🥰
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Next step in treatment starts tomorrow, when I will have the tattoos and positioning for radiation. 6-7 weeks of daily radiation treatment 5x a week. Goal is to shrink the tumor, but unlikely to eliminate it. Is a grind, with the drive about 2 hours out of my day, but I am taking a leave from work until mid July. Fingers crossed.
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I hope you have smooth sailing through this new treatment, @owensgrandma
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@owensgrandma I hope the radiation goes smoothly. I haven’t updated my situation in a while. So after that pet scan I went on a drug called Lynparza because they found that I had a somatic BRCA2 mutation. Thought it was working well because my tumor markers were going down. However my follow up scan on 3/31 showed progression. So now I started a new drug called Enhertu which is an infusion every 3 weeks. They also did a tissue biopsy of a few of the lymph nodes in my chest to check for any other mutations. So far the Enhertu isn’t an easy treatment. Hopefully it will get better as I go and hopefully it will kick the cancer in these nasty little nodes of mine.
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Went for my radiation set up yesterday. Not too bad, no new tattoos, they can use my old ones. Have to do the breath hold, which I find difficult and anxiety provoking. I’ll practice as instructed.
decided to make one treatment a week an “outing” with friends. Drive together then do lunch, cocktails, a walk, shopping, sit at the beach—whatever, something fun. Plenty of volunteers. Grateful to have so many friends2