Scares That Turned Out To Be Nothing
Husband here. My wife was diagnosed about 2 1/2 years ago. She is doing well. But that's not to say there haven't been more than a few moments of high anxiety thinking something's wrong or just waiting for test results to rule out a recurrence or mets. I hope it's ok with the great members here that I start a thread that's only about "scares that turned out to be nothing." It might help someone waiting for test results or waiting for a follow up appointment to remain calm when they're fearing a recurrence or mets.
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The drawback to that is that most who had scares and were not diagnosed are no longer hanging out on BCO. They have gotten on with their lives.
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Are you meaning scares of recurrence or mets?
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My wife has been experiencing some symptoms on and off since December that concerned her. She had some pain in the lower rib cage area on her cancer side. It wasn't sharp, but more achy. It came, went, then came back again. She had an X-Ray done in January and nothing showed up on the ribs. Her Onc explained that you have softer tissue in the rib area that can be pulled or strained and this can cause discomfort. She's on Tamoxifen and benign pains that wax and wane don't seem to be unusual.
When the pain returned in March, she had a CT Scan of her chest. It showed nothing in the lungs----or anywhere....except, unexpectedly, there were 2 lymph nodes on the non-cancer side that were described as "prominent" in her axilla.
A core biopsy was done this past Monday, and the waiting game began again. We got the results today that there was no sign of malignancy and that everything about the nodes looked normal other than they were a little big----but we don't know if they were just always like that or if they were reactive at one time to something benign and just never got smaller again (it happens).
My wife had 21 nodes removed when she had ALND 2.5 years ago and has experienced lymphadema on her cancer side for which she gets therapy from a certified lymphadema specialist regularly. The therapist, who knows the lymphatic system A to Z told my wife that her "prominent nodes" were not really all that abnormally sized, even if larger (the bigger one was "up to" 2cm). Anyway, during her therapy, the therapist massages the lymph away from her bad side and sometimes down the chest or across the chest to the good side. It's possible that those "prominent nodes" were reacting to 'working overtime' to compensate for 21 nodes missing on the other side. I dunno.
But I just want to say that "prominent lymph nodes" CAN be free of malignancy. And pains in the ribs CAN be nothing. Do your due diligence with follow up with the appropriate doctors-----but remain calm, knowing LOTS of times, it's nothing and you're going to be OK.
God bless all of you.
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Yes, SpecialK. I meant to make that clear (and have subsequently edited the original post to specify that). I am talking about fears of recurrence or mets.
Thanks.
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So true, MelissaDallas. That's kind of why I wanted to put something together. I think many people come here for hope----and so many of their points of hope are just out there living great lives. I don't post much anymore. It took about a full year after my wife finished treatment (last April?) for us to really embrace the hope. But I feel an obligation to return periodically to share and offer encouragement. I hope we get some entries that help to calm people as they take care of business and wait for results.
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What I was trying to say is that this specific forum is for people NOT DIAGNOSED WITH BREAST CANCER ("For Members Not Diagnosed With Breast Cancer"), so they wouldn't be concerned with a recurrence or mets. I think there is a very similar forum for people who HAVE been diagnosed in the past and are worried because they are going through testing for possible recurrence or mets.
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I think that forum is titled Not Diagnosed With a Recurrence of Metastasis But Concerned, under the category Connecting With Others Who Have a Similar Diagnosis - maybe this thread could be moved by the Mods to avoid confusion.
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By all means, I hope the Mods move this thread to the right place. I apologize for any mistake I may have made.
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Awesome that you returned to the forum Colt. I hope your wife is leading a low stress life right now enjoying herself. I agree the post shold be moved as it is regarding fear of mets, hopefuly mods will follow through. Before it disappears, I want to say that I had a negative/benign biopsy but A month prior to results I'd been to ER because I woke up one day feeling like I'd been kicked in the ribs badly, but I hadn't been kicked. Due to a past blood clot I'd had, I was sent to ER as I couldn't lie down with pain, they were worried it was a clot on my lungs. They diagnosed chest wall pain, it was on same side I'd had a Breast biopsy on, and I was worried when 6 weeks in it was still there. I'm sure the anxiety over the biopsy made my muscles tense up and the muscular pain I already had worse. I think anxiety absolutely makes pain worse, the mind and body are one - Eastern medicine makes a lot of sense to me. It is worth noting that pain in the ribs /upper abdominal area can often be referred pain because there are so many organs squished in that area according to my doctor.
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Mods,
Thanks for moving this thread to the proper place!
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What was your CA 27-29 and or CEA when you were diagnosed with recurrence?
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good to see you back Colt, i have had scares too, ribs, lungs and liver, all seem fine except liver enzymes still not normal.......and I am now on my own, I left my unsupportive emotionally closed partner, your wife is a lucky lady to have a thoughtful empathic man
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Hey, Lily!
I am very sorry to hear of this unsupportive person. You are in my prayers. You always came to support me here when I needed a boost and I am forever grateful. I owe so much to so many great ladies here that I just feel it's my duty to return periodically to say "we're good" even though there are anxious moments.
Sending positive vibes your way
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Well, since it was my week to be scared, I'll post! I had been having bizarre pulled muscle sensation on my left lower back, below the shoulder blade. At times it felt like ants crawling on the area. Over a 3 week period, it not only persisted, but I experienced increasing pain and soreness all throughout the mid back and spinal column. Not stabbing pain, but constant, dull pain, increasing as day wore on. MO, who never wants to order imaging, ordered a PET scan. I had never had any scans other than mammo/ultrasound. Results are in today - normal PET scan! I am completely aware that this does not mean I will always be NED, but for today, I will take it! Have not spoken to MO about what it could be - sure it's related to chemo/herceptin/BC treatment, but as long as I know nothing else is going on, I can deal with it.
Wishing us all an easier road and good results.
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I had one of these recently.
I really tried to learn from the experience. It was a two month watch and wait situation.
I really embraced meditation and tried tolive a full life.
It worked for most of the, the week before I will admit I freaked out.
Here though is what I have learned, if you get bad news, you will regret the time you wasted on worrying when you could have been making the most of it.
If you will get good news you will really regret the time you gave what turned out to be nothing.
So take any steps you can to have the best quality of life you can while you are waiting.
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I have also been through this recently with rather intense hip and lower back pain that started in late October of '14. I already knew I had disk degeneration at L4/5 many years prior to diagnosis. I had a regular MO appt in December so I waited since they say if pain stays for longer than a few weeks - get it checked. My MO ordered a DEXA and bi-lat hip and lumber MRIs. I do receive Prolia injections for bone density problems related to an early hyst/ooph and loss from chemo/hormonal therapy so in addition to checking for mets he was looking for avascular necrosis from the Prolia. Since I have to get available imaging in the military hospital they do DEXA on a walk-in basis and you can't call on the phone to schedule MRIs you can only fax the orders or drop them off. I had difficulty getting the DEXA as twice I went (an hour drive, lol!) and the hospital was closed, but finally got the DEXA in late Jan. and dropped off the MRI orders. Since I wanted to do the MRIs all together they couldn't schedule it until Mar. 2 because they needed a 3 hour block of time. I waited a week for the reports - no mets, but a plethora of ortho issues! I'll take it! I am now in PT twice a week and making good progress - the intense hip pain was actually an injury I didn't even know I had - stress tears in the hip muscle. Cookie is right - worrying doesn't change anything - we all have to "play it as it lays" and preliminary fretting is a waste of time. I know, I know - easier said than done, right?
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I recently had a scare myself and wasted precious time worrying when I could have been enjoying the beautiful weather we had for all of a week lol. Want to experience all 4 seasons in one day? Move to PA! haha. Joking aside, I did come out of this with a big positive, a new and awesome MO. She ordered tests that I had never had done before to make sure there wasn't anything that "could be seen as far as testing goes" and put me on Tamoxifen. I am responding well to it so far and feeling so much better. This is a great topic and thank you, Colt45, for creating it!
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I've had a few scares in addition to the real deals listed below. I was found to have a pleural effusion when I had chemo the second time. It was too small to aspirate so I had to wait and see if it went away. It did. My RO suspects it was 'radiation recall:' where the chemo stirs up, so to speak, thee still lingering effects of radiation. Around that time I also had radiation induced pleuritis--I was sure broke a few ribs! Nope; that healed too.
Most recently I had a rice sized peely bump on my chest that was extensively radiated. I was so scared it was skin mets (my MO and Derm were scared, too!!). It turned out to be dermatitis with lichenoid features, which my RO said is not unexpected with how aggressive my radiation was. And just moisturize more.
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I think the response to this thread is wonderful. I remember when my wife had a cough during flu season----my mind went to lung mets. NO. It was bronchitis. Cleared up with antibiotics. Pain in the ribs that went away and showed nothing on imaging. Just a soft tissue pull. Benign cyst in armpit from ingrown hair. Keep moving forward. Keep living well.
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I think this kind of post is really valuable. We all need to be reminded that our bodies do weird things that have nothing to do with cancer. Most of my "scares" have been self-inflicted, but I have had one major one.
1) Shortly after beginning neoadjuvant chemo, I noticed while getting dressed that the skin on my affected breast had a pitted appearance. I rushed out of the room sobbing about how my chemo wasn't working and I now had IBC. After hyperventalating for about five minutes, I checked the breast again and the pitted skin was gone. Explanation? I had wrapped my towel too tightly around my body after showering and it had made indentations in the skin.
2) *MAJOR TMI GROSS ALERT* After round 3 of AC, I noticed that I had a small lump below the belt. My first thought was OBVIOUSLY metastasized cancer in the groin lymph node. So I kept poking and prodding the little bump and caused a massive infection that swelled into a huge abscess that was so painful it kept me from walking before it finally started draining blood and pus. (My husband was my fiancee at the time and I knew nothing could drive him away when he checked for me and kept me updated on how the draining process was going.) Turned out it was an infected hair follicle.
3) I have a tiny bump on the top of my head. After flipping out about skull/scalp/skin mets, a dermatologist declared it was a cyst.
4) I had non-itchy, red bumps that came on suddenly and spread all over my stomach, lower back, buttocks and thighs. I was extremely concerned about skin mets. They eventually resolved themselves. Bug bites or an allergic reaction to Zoladex are possibilities but to this day, I don't know what caused it.
5) (This was the bad one. )Found a hard lump on my mast scar under my arm. Ended up having a scary ultrasound and core biopsy. Result: B9 fragments of lymph nodes.
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I think this is a great idea-- there are so many scares and our minds do crazy things-it is important to remember that almost always, it is nothing.
I was sick last year-- coughing, coughing-- from January to April. Felt fine otherwise, but could barely finish a sentence without coughing. My doc finally ordered a ct scan--- we had done several other things first. Lo and behold- nodules on my thyroid and a small nodule on my lung. I was totally freaked out by the lung nodule. The thyroid turned out to be a small malignancy and we dealt with that--but boy, that lung nodule nearly took me down.
They found it in May and told me the protocol was to come back every 3 months to be scanned. Even though the pulmonologist told me that it was very likely benign, and the research supports that, I just could not let it go. I negotiated for every 6 months, went back in August, no change. Went back this past February--and guess what--it completely disappeared and I was released from the pulmonologist. What a relief.....
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I had a scalp infection on a weekend that drained into my nodes. I was convinced I had scalp mets for a few hours
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Hi! I actually kept a small notebook at my bedside initially to write symptoms that all ended up being nothing! I learned from this site to wait
a few weeks then get it checked out. I had terrible tail bone pain after chemo that ended up being from snowmobile bouncing and not cancer....actually looked up tail bone pain on this site & found common issues. Lately had some arm twitching & a friend thought I was getting Parkinsons...talked to the Onc & was relieved to hear others on Arimidex et "twitches"....they have now resolved. Keep looking forward with your wife & if stuff does occur you'll deal with it then. Time does help all of this too!!
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Great thread. I have added to my favorites.
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I had a few weeks where I would get a major muscle twitch in my thigh. You know like an eyelid twitch?, but you could see this through my pants!
I told my doctor (GP) I was concerned about it, and he did order thyroid function tests, which were normal. Eventually the twitching stopped. Shrug.
I have twice had lumps on my mastectomy side investigated. Once biopsied - just scar tissue the first time, and MRI the second time showed no evidence of malignancy. Recent path results following my 2nd (prophylactic) mastectomy and bilateral reconstruction surgery, all came back as no evidence of malignancy.
Despite 2 breast cancer deaths in my social circle in the past month, I THINK I am finally starting to worry less about recurrence/mets!!
At least I don't check for lumps EVERY day in the shower now!!
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Colt, this is a GREAT thread, thanks for starting it. I know we all freak out at every little twinge and it has been great reading all the above posts of some things I have been experiencing myself that turned out to be nothing. (I think the rib pain is pretty common even years after mastectomy, even though my breast surgeon keeps saying that it isn't).
This thread has made me feel so much better, less worrying
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What a tremendous job you awesome women are doing contributing to this thread! You are undoubtedly helping so many who might feel anxious wondering "what the heck is my body doing NOW!??"
I know I was looking for stories like these when we finished treatment-----still am.
Thank you SO much for pitching in. I know there are more stories out there----heck, I'm impressed with the ones we have so far! Amazing.0 -
Bump
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Hello Colt45...thanks for starting this thread... Probably one of the toughest things for me is the fear of being blindsided again by this beast so it is hard not to go to "worst case scenarios" when a new ache or pain starts. Great to know iI'm not alone in this:-) last year I developed back pain and was limping around. Finally told my MO so she ordered a bone scan...I never thought I'd be so happy to hear I have arthritis! Fingers crossed that we all keep getting "good news"... Take care, we are all in this together:)
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Maureen,
Thanks for contributing. You've supplied another great example. Arthritis never sounded so wonderful! And it's just one of the many relatively innocuous things the disconcerting pain can be
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