Scares That Turned Out To Be Nothing
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Wonderful news, Carrie37! And how thoughtful and considerate you are to share. You undoubtedly are helping countless people who may be experiencing similar issues and are waiting for more information on their own case(s). Thank you so much for contributing. Bless you
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This thread gave me some comfort last week (until I read my CT report), so I thought I'd create an account and post my experience. I was scheduled to have reconstruction a couple of weeks ago and the plan was to take my port out at the same time. There is a spot on my lung that my oncologist has been watching since my initial diagnosis, so I had another chest CT the same day as my pre-op. I asked if there was any way to take a quick look at the CT just to make sure there was no reason to leave my port in. My reconstructive surgeon came in and told me that while the spot on my lung looks stable, there was an enlarged lymph node in my left armpit (cancer side), he'd spoken to my oncologist, and she'd asked him to postpone my surgery. They scheduled an u/s and bx to figure out what was going on, but needless to say, I was worried. I found this thread and it made me feel a little better. A few days later, my CT report was posted and it actually said I had an enlarged lymph node "consistent with metastases." And that was all it said, which was really discouraging because all other radiology reports I've had offer multiple possibilities for what something could be. At my u/s and bx, the "enlarged lymph node" turned out to be the seroma that I have had since my last surgery (which we all knew about). Apparently CT isn't a great way to look at lymph nodes and this is why. The radiologist jumped to a reasonable, but wrong conclusion based on my history. I keep wishing I had asked, "are you sure you aren't looking at my seroma?" They drained the fluid and took some cells and looked at it all just to make everyone 100% comfortable that there was nothing malignant, and there isn't. Of course I am relieved, but I am also frustrated. Now I'm wondering how long it will take to get my surgery rescheduled and whether it will interfere with a trip I have planned!
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KristenW-
We want to welcome you to our community! We're glad the mass turned out to be just a seroma, and that there's no metastasis, what a relief! Hopefully you can reschedule your surgery ASAP and still be able to take your trip!
The Mods
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The scares are awful, I was afraid to think positively and suddenly get the bad news.
It is a horrible way to live.
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Meow13, yes so scared. Like with my diagnostic mammo, so wanted to think positive then the nightmare began.
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Bump
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Bump
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Hi,
I just found out today that a lump I had to have biopsied was fat necrosis. That didn't stop me from panicking for a week, and I'm exhausted from that, but I am so happy to have another day without a recurrence.
I hope my story can help someone who was as worried as I was 24 hours ago.
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Wonderful news, Eschindler! And it's awesome of you to share your story. It will undoubtedly help many endure the waiting if they are worried.
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I thought I would tell you about my first real scare as well. I found a lump while applying lotion during radiation and mentioned it at my next doctors appointment. I thought they were just going to say "is is nothing to worry about" but the doctor immediately took this very serious...felt it was 1 x 1,5 cm and sent me directly for a fine needle biopsy and thereby made me completely go numb. He thought it was great of me to notice the lump as well. My lord can it come back this fast? In my head I was already planning my immediate funeral.
My onc called me back 2 days later and let me know it was just a lump of fat. In the meantime my entire family came to a total breaking point totally freaking out. Total panic all around. My doctor also said the first time is the most scary one making me think...will it be more times...? but that is why I got the results so fast, normally they would take an entire week. Anyway just wanted to share this if anyone else finds a lump please do not go into a full blown panic before the results come in.
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Relieved for you Kattis!
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Kattis894,
How wonderful that you shared your experience. You will help many with your great news
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Bump
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Bump
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Hey Colt45...I have been lurking around here since 2011 gathering info and have read many of your post since you came on the scene. I admire your commitment to your wife and wish her a long healthy life.
I just want to add to your thread. Finished my 5 years of Tamoxifen in Jan 2017 and went in for appointment to switch over to AI. MO wanted to do blood work and check my estrogen levels and liver enzymes (fatty liver so they have always ran high). Blood work came back in Feb, liver looks good and actually in normal range-weight loss had paid off...but she said my FSH level was still to high. So began a journey of several months of Zoladex injections, which didn't change my level. Then I had to have a brain MRI because she and the board determined I must have a pituitary tumor. Needless to say, having a scan of your brain is terrifying and add to that her PA didn't call me with results in a timely manner....scanxiety is real!
I finally went into office and met with the PA, who I experienced as short on information and long on millennial attitude, she told me... good news scan is clear! She just missed my report and that's is why she didn't call or upload it to my portal. UGH! She tried to give me a script for Aromasin. I told her I will not take anything until I met with MO and she explains why all the sudden it's ok to take the AI when my FSH hasn't changed. Have an appointment in the morning. Who knows what is next, I guess that's why they call it PRACTICING medicine. LOL! Best wishes to all.
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pure0323, thank you for contributing. It is amazing how many different kinds of scares turn into nothing. I recall how every issue initially caused our minds to go to that "dark place". It took some time to say to ourselves "this is likely something else". We all need hope. You sharing your experience helps with that. God bless
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I haven't posted in a few years, and I really only ever posted in the cold cap forum when I was going through treatment, but after my scare over the last couple of months, I wanted to share my experience to help ease the minds of anyone who may be going through the same thing.
Out of nowhere, I started having neck pain that was bothering me more at night and keeping me from sleeping. I am 31 and hadn't been in any kind of accident that would cause this pain. Then a week and a half after that pain started, I began having tingling/pins and needles feelings in my lower arms and hands. The tingling then started in my lower legs and feet. It was a pretty constant feeling and after way too many google searches (don't do it) I was totally freaking out and was convinced that the cancer had spread to my cervical spine. It has been about 3 and a half years since I finished treatment and some of my cancer was triple negative, so that didn't help my fears. I gave it about a week to see if the symptoms would get better on their own, but they didn't. I went in and had an MRI of my neck, which only showed a small disc protrusion and all of my blood work was normal. I was so relieved that there wasn't cancer in my spine, but still unsure what was causing the weird sensations. My doctor prescribed prednisone, which helped all of my symptoms, but a few days after I finished the meds, the tingling came back. I also started having headaches and a stiff neck for a couple of weeks, so then I was scared that the symptoms were actually from brain mets. At the recommendation of my MO, I made an appointment with a neurologist who did a neurological exam, which was normal, and he also ordered a brain MRI. He told me my symptoms were probably caused from anxiety (which sounded totally crazy to me, but he explained how anxiety really does cause physical symptoms) but given my history, he still wanted to do the MRI. The brain MRI results were completely normal. I had been convinced for the last two months that I had a recurrence, was losing sleep, not being productive at work, and not excited about all of the wonderful things that are happening in my life for no reason. The tingling sensations and headaches all turned out to be anxiety. The neuro gave me some Xanax, which has completely helped all of my symptoms.
Living with the fear of a recurrence sucks, but try to remember that most of us will not have a distant recurrence and the unusual pain or sensations you are having are probably not from a recurrence, but if something doesn't seem right, don't put off going to the doctor because the stress of worrying can make everything so much worse.
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Daye, you are awesome. What a wonderful thing you did coming here and sharing your experience. Your story will undoubtedly help keep countless people more calm and hopeful. Thank you
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Hi
wondering if anyone has had a similar story. I am close to 3 years out from my last treatment and had my annual MRI for which I got a call back and just went for an ultrasound and a needle aspiration. the MRI showed a reactive lymph node that wasn't there last year and it is between my ribs and breastbone so it wasn't easy to find out and look at in the ultrasound but I saw my heart beating, pretty cool. so the doctor said that it could be an infection or recurrence. I haven't been sick but I know that node can react without being sick. I am wondering if anyone else had a similar situation and it turned out to be negative.
I see my breast surgeon next week but it seems so far away and I am hoping to have my recon soon so really really praying for a negative result.
Thanks.
Lola
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Daye.
Thank you for sharing your story. I too have suffered with various pains and symptoms that all were due to anxiety. It is amazing how much anxiety takes over your body.
Thank you again , I am sure you have helped many with your story.
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Hi Lola,
My wife had 21 nodes removed during surgery. She later had a reactive node that turned out to be all clear. It was on her "good side". The thinking was/is that her remaining nodes in the area are working OT because of the ones hat were removed and when my wife goes for lymph massage therapy that everything drains that way. I am willing to bet it's not uncommon
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Thanks Colt. Glad that it was a negative result for u our wife.
Mine is on the left side (bad) side and same quadrant I would say as it is very close to my scar. I am hoping that whatever many cells they got it would be enough to perform an analysis as the procedure was a bit uncomfortable. oh well will find out in a few days.
Thanks.
Lola
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At 9 1/2 years past ER-/PR- Her2+ diagnosis, I am on the once-a-year checkup protocol, and I am relatively calm dealing with those and the yearly diagnostic mammogram on my remaining breast. This year I was told to return in 3 months since my white blood counts were low (due, I'm sure, to a dental abscess, the flu, and a UTI from hell.) Went back - all was well - until they called to tell me that my tumor markers (Ca 27 - 29) were up from a usual high teens - twenties to 40.5. Come back in 30 days and retest.
July was hell! I totally relate to Daye's anxiety-caused physical symptoms - I developed a burning in my head above my right ear and a shooting pain in my hip/lower back. Since my tumor markers have always been pretty stable, I just knew, of course, that horrible things were going on inside my body. Google was terrifying
and waiting for the phone call after I retested was agonizing. Good news - markers dropped to 27 - see you in a year! Hmmm, pain has gone away since then!
Sometimes scares DO turn out well. Everyone going through a period of anxiety and waiting to test or see a doctor is in my thoughts. Wishing all of you well!
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Hi,
met with the breast surgeon she said that it's unusual that the node would be cancerous but then she said that we don't know what it is. will repeat the MRI in November.
I got a copy of the MRI and ultrasound and biopsy. The U/S was rated as Birad 4 and the node had thickened cortex at 2.8mm and as I fear there was not enough cellular material from the biopsy to make a clear diagnosis. I have come across stories that had a FNA biopsy that turned out to be "false negative" and from what I read from the report it appears that a diagnosis can't be done. the report has me confused as it says "diagnosis is unusual" what does that even mean!!!
Anyway, have to wait till November/December to find out.
Thanks for sharing your stories.
Lola
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Lola, sorry that the results haven't been more clear for you. In my wife's journey, her mammogram failed to detect her tumor, but she felt a lump and pushed for more testing. She had an ultrasound that came back as "suspicious", so she went for a fine needle biopsy, but that came back negative. She still felt the lump so she pushed for an excisional / surgical biopsy and only then was the cancer confirmed. Can you have a surgical biopsy of that node? If it were possible, it might help clear things up more definitively
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Thanks Colt. I didn't ask for a surgical biopsy, I don't want to remove any more nodes if possible. at the time of my surgery the bs removed a node on my chest and now I have a bit of lymphodema in that area.
I will wait for November, not that far away and see what happens. Thanks for sharing your wife's experience.
Lola
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Lola,
It sounds like you've made a well thought out decision. The best any of us can do! Prayers and warm wishes to you. It sounds like your breast surgeon feels strongly that the news will be good. And that's a great sign.
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Dear Colt and Readers
In case this helps, in the five years since I was diagnosed with Her2+ breast cancer I have had various lumps and bumps leading to tests. All turned out to be lypoma, sarcoidosis, breast cysts, sciatica, a droopy lacrimal gland and natural bone repair. Not cancer.
It can be so scary waiting for the results of tests so I hope this gives hope to you.
Alice
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Alice, how wonderful of you to share your experience with the rest of the board. It's selfless for you to reach out and offer hope and comfort to folks who are maybe waiting for results or a follow up appointment. God bless you
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I hope this is okay to be posting here...
I am writing for my mother, who after they did a CT scan found tiny nodes scattered through her lungs. Her breast surgeon who found the nodes in the scan, believes that they do NOT look like metastic bc, but wanted her to go to a pulmanoligist just to check it out. She said it could be a disease called "Sarcoidosis". My mom went on Thursday to see a pulmanoligist......
While in the appointment with the pulmanoligist, My mom brought up the fact that her doctor, the breast surgeon, said it could be sarcoiodis, which is known to mimic breast cancer mets. The pulmonolist said, you don't live in the midwest (we live in Idaho) so that can't be it. (She has spent alot of time in the midwest as well as North Carolina, Louisiana and was born in Peurto Rico, which are also areas sarcoidiosis is know to be found). But my mom does have some of the symptoms of sarcoidosis, such as, achy hands and ankles (which she was scared for her bone scan to come back because she has been having a lot of joint pain lately). It came back clean. She also has the symptom of tiny scab like figures on her hands and one on her wrist, which the pulmonoligist just said, thats a scratch.. It is not a scratch because my mother has been watching it grow and has been worried about it since her bc diagnosis 8/03/2017. The achey hands and ankles has been a thing she noticed about a year ago. Which she has also read rheumatoid arthritis can lead to these nodes in your lungs as well. The pulmanologist pretty much just said, well, you have breast cancer, so it is probably cancer and sent her on her way.
After hearing that we did a lot of research. We have found granulomas can form from many things, such as scaring from past infections.
As of yesterday, we got a call from the breast surgeon who had showed 2 of the radiologist in her office, whom also said, it doesn't look like breast cancer mets. She then showed it to an all body radiologist, who also agreed it didn't look like mets, but it needed to be checked out because they can't factor bc mets out without totally knowing. At this point we know we have to be realistic that it could be lung mets, but we also just dont know who's answer e]we should be more confident in. We are trying to stay hopeful. My mom didn't feel extremely comfortable with the pulmanolist and the way she pretty much layed it out there without even testing it first.
We are heading down to MD Anderson on Monday, where they got her in for a lung biopsy and she will hopefully know as soon as she gets out of the biopsy.
Has anyone else had any problems like this?
Thanks in advance!
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