Long story but I would like your opinions please
I'm trying very hard to keep myself calm but I'm starting to get very anxious with difficulty sleeping. Here's my story - On June 26 I found a palpable mass on my left breast that seemed to appear out of nowhere. The breast was itchy and painful and felt very heavy. My gp put me on a 10-day course of Keflex 500mg 4x/day. Nothing changed with the Keflex - breast remained heavy, painful, itchy. I even had to wear a sports bra when I slept so the pain didn't wake me up.
I had two studies done on 7/1/2013:
- Mammo revealed a 2.4cm mass with partially obscured margins.
- US reports a heterogeneous hypoechoic lobulated mass measuring 1.3 x 2.4 x 0.9cm. Also, slightly more lateral there is an irregular hypoechoic lesion measuring 0.8 x 1.3 x 0.7cm. This study also states there is surrounding vascularity, however, no definite internal vascularity.
On 7/23/13, I had an US-guided bx - this time the report noted internal vascularity but the path report came back as "abscess formation in the background of inflamed cysts". The recommendation was to meet with the breast ca surgeon, with whom I already had an appointment scheduled.
8/14/13, I saw the surgeon. My expectation was simply that we would be scheduling a procedure to take care of the abscess. After the exam, however, she recommended an MRI to r/o IBC. She was not comfortable with the path findings. She was concerned that a 10-day course of Keflex didn't change anything, my left breast is still enlarged and my nipple is at times flattened. I still have a palpable lump. I don't think it is as big as it was before but the reduction in size doesn't seem to be associated with the Keflex, as it seemed to reduce after I was off of the antibiotic and one would expect that it would start working right away. Also, the breast itself hasn't decreased in size. Other personal info: 48 y.o., total hysterectomy 2009 with no HRT, non-smoker.
I have an MRI scheduled for the 26th. I am wondering if any of you have had similar symptoms and/or if you are aware of any other reason why one might have unilateral breast enlargement. Thanks !
Comments
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She didn't want to do a biopsy? My breast specialist explained to me that she had me on antibiotics to reduce inflamation so that I'd have a clearer MRI result, not just to see if my symptoms would abate (which that had already, anyway, before I began the antibiotic). The idea was that if anything suspcious came back on MRI, I would have a biopsy (punch, with extra snipping of breast skin: ouch!). She said that she didn't want to do biopsy first because it would be better to do MRI first (swelling, healing, etc..). Because of my situation, I won't be getting a biopsy, that I know of, but I see specialist again next week to wrap up my case. According to my breast specialist, she said that she has seen so many cases of unilateral breast enlargement due to infection. I even asked her, "How can it be infection without any fever or other ill-feeling symptoms? Isn't mastitis rare in non-breastfeeding women?" She said, "It's not rare. And you can absolutely have breast infection without a fever." She said many of her patients have mastitis with exactly the same symptoms as IBC. She always rules out IBC with MRI or biopsy if even one of the symptoms of IBC are present, sometimes both MRI and biopsy, depending. She also told me that some people don't respond to every antibiotic, so many doctors make the mistake of doing another course with a different one, rather than going straight to mammogram, ultrasound, MRI, and biopsy (depending on MRI). Any chance you can get in for your MRI sooner?
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Hi chikensheet. Thanks for reading my long post and sharing your experience. My surgeon just suggested the MRI at this point. She didn't suggest a skin biopsy. I'm not sure why but I would think that the MRI should give us pretty good information. I think she probably also wants to limit any additional scaring or trauma to the breast because it makes future scans difficult to read. Your post makes me more comfortable with the possibility that this could still be an infection that just wasn't responsive to Keflex. Maybe I just need a different antibiotic. The MRI is just scheduled for Monday and it'll be done and read at the breast cancer center where my surgeon is so I don't expect I'll have to wait long for the results. The core biopsy did say abscess so maybe the infection was too much and would be more responsive to another course of antibiotics. The breast feels bad and I hate this not knowing. I hope I get some answers soon. Thank you again. You gave me some rational hope.
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The MRI (after a comprehensive - not just regular screening mammogram - and sonogram) was enough for my doc to rule out IBC. Before the MRI, she was extremely concerned about IBC to the point where she had her nurse call the hospital to schedule the MRI the next day. I was sure I had IBC because of the way they were treating this. GYN said directly to me, "This is not an infection." The radiologist said, "This is an infection." Breast specialist said, "I'm very concerned about IBC." It was a roller coaster for me, but the waiting was a matter of hours here and there, as my doc rushed results so I wouldn't have to wait.
I think your MRI will reveal quite a bit. The MRI itself lasts about 30 minutes. You might want to get a couple of valium before (I took 20 mg because I'm a chickensheet!).
Next tme I get a breast MRI, if I ever do, I won't need the valium, as I now don't feel intimidated. I've also learned that even with the major concern of IBC from my breast specialized - even then, she said the odds are very low that this is what I have, but it's her job to be concerned for me, given time is of the essence with it. Riding it out with you -- will be here to read your posts.
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It's is so kind of you to ride this out with me. I haven't told anyone of this new possibility as everyone was so relieved about the diagnosis that came back with the core biopsy I just didn't want to put them back on the roller coaster with me. I am very familiar with MRIs. I have a pituitary tumor and have been having them almost yearly for about 20 years. In fact I'm having one this morning. Nonetheless I can't seem to get used to them. I guess they have to stick you all the way in for breasts, too, huh? Ugh. Oh well, it's not the worse that can happen. My breast feels like it is bigger everyday. It is also heavy and pulls down on my bra strap to the point that it hurts my shoulder. Plus, I only have a few shirts that can camaflage it - LOL! I look forward to having this resolved.
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Yes, they stick you all the way in with the breast MRI, but at least you're facing down - and with a valium, you really won't care.
I hope this gets resolved quickly. You can't just keep being uncomfortable like this, in addition to the worrying (to put it mildly). I'll keep checking back for updates.
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DiddleyDoo, just thinking of you. Monday can't come soon enough. Everyone says to stay busy and try not to worry, but I'm the opposite. I become so anxious and have to fight my own head to be able to function through the day. I hate waiting. Like anyone - I just hate it.
If you hear anything Monday after your MRI, please post back. I will be checking, so please don't forget. I'm really riding this out with you.
Meanwhile, I'm sure you've tried everything. But here's what worked for me with my swelling (mine swelled to maybe one size bigger). I used a heating pad with those beans inside. You could also sew up your own heating pad with cottom material filled with rice. Just sew it up -- stick it in the microwave for a few minutes .... I would sit with that heating pad for hours and hours just to get relief from the swelling. I imagine you've tried everything, though ... really hope you can get answers by Monday, at least, and get the party started with the right treatment. This waiting just sucks!
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Hi Chickie... Thank you so much for being here for me and thinking of me. This virtual hand holding is really a big help, especially as I get closer to knowing. It seems that my anxiety is worsening with each passing day. I guess when the tests are far away it is easy to focus on other things, but this gets harder to do when the time draws nearer. Going and staying asleep is the most difficult, but even that can bring new insights. Last night I woke up around 2am and couldn't go back to sleep so I turned on the tv. I started to watch an episode of The Soup and in one of the clips they showed a man who was going in to have his 152lb scrotum removed! This brought to mind two thoughts: 1) whoa, things could be worse - at least my breast isn't THAT big!, and 2) at what point does someone look at their ever-expanding scrotum and say, "gee, perhaps I ought to get this thing checked out"?
Thanks for your suggestion to try heat. I have one of those heating pads that you describe but haven't tried it on my breast. It's been so dog-hot these days that even in a/c I get sweaty when I'm doing a lot of physical stuff. I think the heating pad would also make me sweaty, but I'll give it a try. Perhaps at night when it is cooler it won't be as bad. I have tried ice packs and that can give me some relief. The heat though would cause blood vessels to expand (and lymph), so that is probably better than ice. I'll give it a try. I'm happy to hear other advices or suggestions so please don't hesitate.
. And, again, thank you for the support. It is amazing how helpful it is just to not feel alone and all stuck in your head! I will definitely keep you informed of my results. -
Diddley,
I hear you on the virtual hand-holding. Even if someone responded to my initial post with, "Shit!" - and only "Shit!" - I'd feel some relief knowing I wasn't out there alone. The knowing part of not being alone is the tiniest and slightest relief from the enormous anxiety of waiting this out. I'm on the other side of things now ... MRI was on Thursday, today is Saturday. Monday, Tues, Wed, and Thursday until 7:00 am I was a goddamn wreck. I couldn't focus, breathe, sleep, eat (and I love to eat), or engage in any normal daily life stuff. I just didn't have the coping skills to face something like this where there was so much at stake for me. And as I type this, I know now, at *any* time in life I could be back in the same position. So that's a whole other thing I have to address. Probably will need to get therapy. I'm still having a hard time sleeping because my mind continues to wander. You'd think, now that I'm out of the woods, I'd sleep like a baby. So, I hear CBT therapy is where you don't have to dive head-first into all of your childhood crap and the therapist helps you cope using different thinking techniques. That ... I could do.
During my waiting, people suggested I breathe in a therapeutic way like while I was giving birth? What? I can't even breathe to begin with! So, anyway, I know the feeling of intense anxiety. If you can get your hands on some valium, it really helped me. My breast specialist gave me a couple of extra so I could try to sleep the night before the MRI, then enough to get through the MRI (which, I found okay). I do understand what you're saying about the time getting closer to MRI, your anxiety is worsening. My breast specialist seemed to understand this before I did, so it was nice of her to give me some extra valium so I could get through the night (still didn't sleep, but it took the edge off). I had mine done in a hospital - the third time ever being in a hospital and the first two I got to take a baby home. The third time sucked. Friggin IV in arm, walking down the hallway and reading, "cancer" here and there, and cancer brochures everywhere. It all just felt like I'm going to have to get used to cancer being my world now. Like others explained, their "new normal." Wednesday night, the night before MRI, I had already researched breast cancer support groups and had phone numbers ready to go. I'd already researched IBC specialists in the Washington DC area and could only feel like I need to be ready to go forward immediately. My GYN was convinced this was IBC. If she was convinced, then why shouldn't I be? After the MRI, I went home and looked at all my stuff. I had all of these Pinterest-y projects I wanted to do (just moved into a new apartment and was excited to get crafty). After MRI, walking in the door, this apartment went from an exciting decoration project into a feeling of, "So this is where I'm going to die." A few hours later I got the call, "Not cancer." GYN called me a couple of hours after that asking if I wanted a biopsy to be 100% sure. She said she would call in to get me scheduled that day. But with my symptoms abating and the MRI clean, I didn't want to do it. I'm going on the assumption that I'm 100% sure now, and if I develop symptoms again, I'll go from there. Breast specialist says that's wise.
Back to the waiting for you .... I'm certain you have this handled, but I've got to say it. I told the radiology records department to expect a call from my doctor right away asking for the results to be read to her over the phone, so don't put my chart at the bottom of the pile. The guy at the records department was a sweetheart and gave me the phone number and said she could call whenever she wanted. I even had it in mind that I'd call myself and pretend to be the doctor, but realized that would sound all Beavis & Butthead: "uhhhh, yeahhhh, uhhhhh, you know that lady from earlier? Is her boob okay?" Waiting, waiting.... ugh. Still riding it out with you.
P.S. 152 lb scrotum. I mean, even a 5 lb scrotum would have me in the ER. 152 lbs? WTF?! Did you read the thread here somewhere about the radiologist having a cartoon on the wall of an MRI machine, where there's the donut hole, only the guy's whole body doesn't go in, just his penis. I laughed about that when I was in the machine.
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LOL. I didn't see that one but I did see a cartoon once that hat a man with all of his junk smashed between two plates and underneath it said, 'manogram'.
I am doing relaxing things and will get a massage later to help me stay relaxed. I have some Ativan if I need it too. I had a difficult time after I got the first "all clear". Maybe it'll get better for you, too. It was weird. I think it reminds you how vulnerable you are to things that you generally only think 'other people' get.
I wish I could get my answers on Monday. It'll be more waiting though! -
Will be thinking of you tomorrow. The waiting.... ugh.
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Wishing you the best of luck tomorrow! I will be thinking of you. Let me know how it goes.
Sending positive thoughts with negative findings
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Thanks so much! I really appreciate all of the support and well wishes! I'm looking forward to sending you both good news very soon.
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Been thinking of you today. Hope all went well.
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Thank you for your thoughts. It was very easy. You're face down with 'the girls' hanging down but it is surprisingly comfortable. Since you're lying face down you can't really see anything which helps with the claustrophobia. With the added socks and blanket, I was so comfy I fell asleep! Now I just have to wait for the results.... That's gonna be the hard part.
Your scan is Wednesday, right? I hope it all goes well. You'll be in my thoughts. -
I'm glad you got some sleep in the MRI machine. Still waiting with you....
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I'm so glad it went well! Glad that step is over. How soon will you get your results? Hopefully by the end of the week! Hope you can rest your mind while you wait.
Yup.....Wednesday. I'm sure it's nothing. I'm really not too worried. Lol
Sweetest of dreams everyone. -
Thank you ladies - you are awesome!
Yes, I certainly hope I'll know something soon and will certainly let you know. I've got a crazy busy week so hopefully the time will go by quickly. I hope you are doing ok with your waiting Cls1. Tom Petty sang it best ... "the way..ay...ayting is the hardest part"!
You both have been and continue to be such a big help to me. I really can't thank you enough! {{{HUGS}}}
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Lololol. Tom Petty!
Yes indeed, waiting is the hardest part.
You are a sweetie.
{{{HUGS}}} from the other side of the country. -
Hi DiddleyDoo: I have been checking in to see how you are. I pray for benign results for you and also for the other gals waiting too. I love that Tom Petty song.
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Checking in to see if you've updated. I know it's early, but thought I'd try. Still riding it out ...
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Thank you Petitegal ... I really appreciate your well wishes!
Hi Chickie ... No news yet. I did call but the report isn't in. My surgeon's secretary said she would look for it tomorrow. Maybe I'll learn something tomorrow. I'm sure that I am going to so happy that I'll want to post right away!!!
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Wait!! I could have had a valium during the MRI?? Dang!! (kidding, I would have refused it anyway)
Had MRI yesterday. PET/CT tomorrow morning followed by Port placement later in the morning.
I'm still trying to figure out how two weeks ago my life was near perfect and now this detour. Sure glad I trust the Guy who has the game plan.
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Amen!!!
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Hi Cls1 - I hope all goes well today. I'll be thinking of you and sending postive, b9 energies to you!
KJ - wow, girl - it is amazing how your life can change in a NY minute, even when you're out in WA! You have a great attitude, which I believe is definately going to have a positive effect on your journey ahead. I will be thinking of you and hoping for "No mets!" with your PET/CT. God bless and I hope the best for you during this difficult time. We're always here for you, too ... even those who have had b9 results. It's really something how they all continue to give support. The ladies on this board are very special, indeed!
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Going in for my mri. Here goes nothing. Lol
Any word on tests yet?
Ttfn.
Thx again. -
Best wishes to you!!!
No news yet ... perhaps that means good news!
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Thinking of you, Cls1! And you, too Diddley.
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Thx chicky!
It was a long day. Lol
Glad that is over. 1 1/2 hrs in that silly mri machine. Should've taken Valium. Lol.
Patiently waiting on Diddley to get the B9 report so that we may party.
How are you doing chicky?
Sweet dreams to all!!! -
Thank you Chickie! Cls1, thinking of your 1 1/2 hours in the tube makes ME want to take a valium! Ugh! Will post as soon as I know - I've got the party hats and streamers for the B9 Party! We'll have to wait for your B9 results, too, Cls1. KJ - you're invited too, b/c you are truly rockin' that tough diagnosis. Don't think you'll be able to play in the ball pit, though, what with the port placement and all, but we'll come up with something. I hope the scans are the begining of a long and wonderful relationship with NED.
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You all are too funny! You can't keep me out of the ball pit that easy!!
Port went in just fine. In fact, I was able to be driven to an important evening meeting afterwards and didn't feel bad at all. However, about 9pm, I was ready to sleep it all off. Didn't realize it would be so sore today, but was able to go remote into work late and only worked half the day (thanks, Boss!), so I could take some pain medication. The PET Scan was an hour long and I had to drink that gross Barium liquid. The CT scan was 5 minutes. The high contrast injection felt really really really weird, though!Oh, and bonus, I knew I was headed to the hospital, so I asked them to just tape up my IV port so they didn't have to start a new one at the hospital. They said YES!! Awesome! One less stick.
One side benefit of yesterday was that it helped Team Simpson bond a bit more. The kids (18 and 21) were my chauffeurs for the day and I think it helped them feel useful and alleviated their fears some. This experience is not just mine. They are as affected by this detour just as much as I am.
MRI results were back. Apparently there is some activity on the right side too. That was disappointing. But, chemo is a systemic treatment, so it can't hide. Still waiting to hear about the PET/CT results. The "tumor board" discusses my case today. I was told they will have the PET/CT results as part of the discussion and the Doc will call me afterwards.
I'm hoping to be a few months into NED by this time next year. In the mean time, Life is Good and good prevails.
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