Lumpectomy Lounge....let's talk!
Comments
-
Hello ChiSandy. Did you have a mammogram that showed architectural distortion? I just had first 6 month mammo after lumpectomy and radiation that showed a well circumscribed mass adjacent to architectural distortion. Doctors notes says he believes it all very likely post surgical and that the “mass” is fluid filled. Will now have an ultrasound. Just wondering if we had similar stor
0 -
No, my every-6-month followup mammos after surgery each showed an "area of opacity likely fluid-filled," and the radiologists noted each time that area has been steadily shrinking. That corresponds to a big honkin' seroma that for awhile had been much larger than the excised. tumor cavity (courtesy of radiation, it peaked at 20cm--the size of a AA-cup breast) but is now back to about the size of the cavity (9-10cm). No mention of architectural distortion; guess my tumor had been too small to cause it. After last June I went back to annual mammos, so this June will tell.
0 -
Tappermom, I know what you mean about feeling 'confused and unsettled'. THe mamm I had 5 months (I think) after end of radiation showed that the architectural distortion originally seen on the bad mammogram persisted, even after lumpectomy. Carcinoma could not be ruled out.
I freaked out. What? You did a lumpectomy, got clean margins and now you're telling me that oops, gee, sorry, looks like we left some cancer behind, our bad? I got a second opinion on the mamm and ultrasound and the 2nd opinion said, meh, it's no biggy, typical post surgical scarring, don't worry about it.
I was left, as you say, feeling confused and unsettled. With two opinions seemingly opposite of each other I didn't feel any more certain of my medical situation than when I started!
In the past two weeks I had another mamm, 4 months after the confusing mamm. And they said the area of architectural distortion is still there, but not changing, not growing. Just sitting there. Come back again in 6 months. And I'm thinking to myself, I have had 2 mammograms in the last 4 months, in December and again now in March. And they STILL want me back in 6 months? As much as I want to feel reassured, I do not. No, no one suggested a biopsy. But no one is giving me the all clear either. They seem to be watching me closely, which is excellent, go ahead and watch. But I DO NOT FEEL SAFE. I feel unsettled and confused.
0 -
Grl06c--Great news! I'm very happy for you! Yay!
0 -
I think I've told y'all how my IDC was found. Went in for annual screening. Saw some architectural distortion in *upper outer* quadrant. Called me back for diagnostic mammogram and ultrasound. Same thing. Report was kind of vague (all the ultrasound report said was "she got an ultrasound"), so PCP recommended a second opinion. That is when they found DCIS and IDC in in the *lower inner* quadrant. First place/first radiologist never even saw it. After final Dx, I wrote a stern letter to the hospital, which made them terrified I'd sue (no such intention) and followed up with a scared phone call and wishy washy letter stating they appreciated my concerns and would "try to do better about patient education." (They need an on-site radiologist; can't afford it). But honestly, they are not the people who bug me--it's the off-site radiology center who did "telemedicine" to read the first two mammos and ultrasound--and missed the actual cancer completely. Totally.
Now, I'm not a medical professional, but at the second opinion specialty location, even *I* could see "something" on the ultrasound. (DCIS--quite a bit of it). Of course I had no idea what it was, but thought it looked odd. So, I *have* filed a complaint with the state medical board against the radiology firm who read my initial films. They manage readings for like 7 hospitals and get paid in part by how many they read. I think that's ethically unsound. I don't want to sue anyone. But the person who read my films is not a breast specialist--he's a generalist. And he missed this. My main complaint is that I was a patient with a prior history of DCIS and a strong family history. He needed to sloooowww down and take a good look and order more films (i.e. spot compressions) right then instead of it stretching it into a month-long mess. And if he saw something, anything, even if it wasn't what was eventually found, he, the radiology expert, should have been more pro-active on urging me (or telling my PCP to urge me) to go to a specialty center right away, not back to the same dinky hospital lacking updated equipment. My surgery and treatment were delayed because they wanted me to come back to the dinky hospital--radiology is a huge portion of their funding. (And look, I am glad it's there in our rural area--some screening is better than nothing for people who cannot travel).
Sigh. I know medicine is not perfect. Doctors are not perfect. But when I am not certain of something--I stop. I ask for assistance from a colleague or tell my student, "That's a good question--let me have a few hours to get you a full answer because this isn't my area of specialty." That's my gripe in this--don't be afraid to say, "Look, this is an area of concern, and because we do not have 360 equipment, we advise you to talk to your PCP about a referral to a breast specialty clinic." Nope. Never happened. And here we are....PS: Hospital threw my PCP under the bus, stating she should have referred me out right away....
0 -
Tappermom, that's great! Thank you for the update and glad you're doing well. I do have an occasional "ping" in the lumpectomy breast too, but it goes away
0 -
astyanax66, you are ABSOLUTELY right to go elsewhere to seek a second opinion at a more experienced, more equipped hospital. I live in a rural area, but am originally from a more populated area that is about an hour away from me, so not too far to drive in order to go to the doctor. I support healthcare in my area. I "want" to support my local hospital. I go to the benefits and fundraisers. I give them money. I "want" to think they could save my life. I "want" to think they could diagnose such life-threatening diseases such as breast cancer.
But am I going to depend on them and trust them when I'm worried, to tell me it's nothing, for example, when, in your circumstances, there's a family history and there's something odd on ultrasound? HELL NO. You did the right thing. You're going to save your own life and other peoples' lives who will never think to question. (lucky fellas)
You deserve a great big THANK YOU.
Thank you!
Beth
0 -
Ugh! Here’s a question for all of you that went through radiation. Did you have ankle and feet swelling, and if so, did it go away eventually after treatment? I hate the fact I just started to have swelling at the end of day. I have two weeks left of rads. I’m wondering if this is permanent Lymphedema. I thought at first I may have had too much sodium in my diet, but realized it wasn’t that after a few days
0 -
Thank YOU, Beth! You understand the situation perfectly. I don't want to do anything to "hurt" the people who rely on the small, local hospital. But they have to start recognizing what they can and cannot do because of lack of advanced equipment and on-site personnel like a radiologist.
0 -
Blair2- completed 16 accelerated rads, no ankle or feet swelling. It may or may not be related to rads. Elevate your legs for a while, or whenever you're sitting, because it's at the end of the day it sounds like normal swelling. If it persists, let your GP know. Hugs.
0 -
Blair--totally agree with Cindy's response. I too have just completed 16 accelerated rads without ankle swelling. I do sit with my feet up whenever I'm sitting on the couch during the day and get up to walk around frequently when working at the desk. Good luck and do check with your MD if the swelling continues.
0 -
Blair my leg and ankle swelling was directly related to my chemo treatments my oncologist tells me. And i didn't suffer swelling until i was into rads. It did eventually go away but took months. I was given the same advice regarding the swelling, when seated, keep your legs elevated, try not to stand for long periods of time. All the best.
0 -
Interesting discussion about mammograms. My tumor was found on a mammogram and when I went in for the biopsy, the radiologist was almost sure that it wouldn't be cancerous. I remember that she said that most cancerous lumps have a hard edge and a certain feel to them, from the radiologist's point of view, and mine felt different. And that is also what my doctors always told me to look for in self-exams.
0 -
Thanks ladies for your replies. My ankles aren’t swelling much tonight. I’m on a very bland diet in preparation for my pet scan tomorrow (for back pain I’ve had since Dec. 8th). I think chemo caused that, but what makes me nervous about foot and ankle swelling is that it’s a sign of heart condition too. (Had a bypass three years ago, so I’m very tuned into these kinds of symptoms). I don’t need more headaches in my life
0 -
I'm glad that I found this message board. I've been overwhelmed with information on this site over the past couple of weeks. Reading the stories of brave warrior women like all of you has given me great strength. I check in to the hospital tomorrow morning at 7 to have my lumpectomy and sentinel node biopsy. The plan so far is to move to radiation a month later, but Doc said that could change pending the outcome of the lumpectomy. I told him to just do what he needs to do and I'll follow along for the ride. I will be reading more of this page tomorrow while I'm waiting for my surgery time (1 pm). Still not sure why I need to be there so darn early since the dye is being injected at 8:45. It's going to be a long wait.
0 -
BarbMac, Early arrival seems to be the name of the game. I had to be there at 6 am with the injection not until 10:30 and then did not go to surgery until 3 pm because of delays in the surgery before mine. Take whatever you need to help you pass the time-- I took reading material that did not require concentration as I knew I wouldn't be focusing on what I was "reading". Best wishes to you tomorrow.
0 -
BarbMac - In your pocket, tomorrow. I waited as long as possible for rads, about 8 weeks. Wanted plenty of time to recoup from lumpy.
0 -
Best of luck tomorrow, BarbMac. My surgery was on March 31; radiation started on May 22. They want to give you time to heal.
Here are some tips from my experience: Have a small pillow handy to keep under your treated arm. It keeps skin-to-skin contact and made it feel better. Don’t be surprised when it’s the SNB incision site that bothers you more than the lumpectomy incision - that’s something we all experienced. It will get better! I had a hard time swallowing anything solid when I got home as my throat was sore from the tube that had been put down my throat. Soup and popsicles!
Give yourself permission to take it easy for a few days. This may be outpatient surgery but it’s still major surgery.
Let us know how you fare tomorrow!
MJ
0 -
BarbMac, Ugh to your exceptionally long day. Mine was not. There at 7 and home before 2. The SNB for me was the most annoying thing. And as TapperMom said, please take it easy. Your body needs all its resources to help you heal from this major surgery. Outpatient doesn't equal minor! Sleep when you are sleepy and rest. If you feel like walking, do so. Just don't lift anything heavier than a gallon of milk with your "bad" arm! Good luck!
HUGS!
0 -
Good luck, BarbMac. I hope your lumpectomy goes well. As others have said of the two incisions the one for the sentinel nodes was more tender.
Here's a link to a video of arm exercises that my hospital prescribes. It really helped me to keep stretched and regain my range of motion quickly. Maybe they'll work for you, too:
Sloan Kettering Breast Surgery Exercises - No reconstruction
0 -
BarbMac, best wishes for a successful surgery and a complete recovery
0 -
I had my lumpectomy with SLNB on Thursday. Same thing, had to be there at 6am and surgery not till 11:30. I am home and doing quite well. Just waiting for results. May God be with you and all involved tomorrow. You are strong and a warrior!!!
0 -
BarbMac- You'll get through this with the support of all of us that came before you. I took my Kindle and played mindless games, couldn't focus to read. Best wishes for a great recovery.
Bauer4- congrats on getting thru your surgery. Recooperate and take it slow. The worst part is the waiting on results.
0 -
Blair, hmm. I'm kind of convinced my ankle swelling was related to my breast cancer. I had ankle swelling for a few years before I was diagnosed. It was more on my left ankle, but a little on my right too. My breast cancer was on my right side. I hadn't had a mammogram in 15 years when I found my lump. ::::I've learned my lesson:::
When I was younger, I was kind of a tomboy. I had endless untreated, barely-noticed ankle injuries when I was a kid/teenager. For example, ice skating, playing ball, cheerleading, brush-off-type injuries. Maybe more on my left ankle, I'm not sure.
My ankle swelling went away about the time I completed my final treatment, which was radiation. However, I was also taking Juice Plus, the berry formula, which is supposed to reduce inflammation, which my daughter swears by, but I'm not taking it now and my ankles are fine.
Just throwing this all out there in case it helps anybody....
0 -
Blair, most often foot & ankle swelling is edema (water retention), which can be caused by excess sodium intake and inadequate water consumption, long periods standing on your feet (especially in hot weather)--both of which explained my swollen feet upon my return from a trip to Italy in 100-degree heat; not moving enough (poor circulation); but also it can be the initial symptom of impending congestive heart failure (which despite the scary name is a chronic disease survivable for decades). What it is NOT a sign of--unless you had nodes removed from your groin--is lymphedema. If you did not have radiation below the waist, then it wasn't caused by your breast radiation. Talk to your cardiologist (and make sure (s)he touches bases with your oncology team).
Sometimes many of us don't realize what a precious resource it can be to have ready access to a major regional teaching hospital with a breast health and cancer center, including full on-site radiology and pathology services.
0 -
Congrats, Bauer4 - glad to hear you are recuperating well. Be careful not to do too much too soon! We all have a tendency to want to get back at it. Sending good thoughts for your results.
MJ
0 -
Hi Bauer4 - I hope the wait for results isn't too long for you. Make sure you're doing your gentle post op stretching & going for walks. It really helps.
BarbMac - we're cheering you on.0 -
How is BarbMac doing? Any news?
Dee
0 -
I had my lumpectomy six weeks ago and still have a lot of nipple sensitivity, like my nipple feels sunburned and is sensitive to the touch. It was hypersensitive in the weeks after surgery, but I'd say I've gone from a 9/10 (I wanted to jump out of my skin if anything brushed against it) to a 3/10 in sensitivity. I know it will resolve eventually, but I was wondering if any of you have experienced this. I have a vascular condition in the nipples (Raynaud's) and wonder if this explains the hypersensitivity, or if this is a normal part of post-lumpectomy. I am still waiting to hear about radiation but I dread starting it because my breast feels so sensitive and uncomfortable already, and I'm concerned about how it will react to radiation. [and I have been interrupted no less than 35 times by students while trying to type this during my planning period at school, LOL]
0 -
ReadyAbout - if the nerves which enervate the nipple were touched or nicked during the surgery, then yes, you can have sensitivity for some time. Are you doing physio exercises and stretching?
I'd also consider massage. As odd as it can be to have your breast massaged, I think it could help. The nipple is enervated by the 3rd, 4th & 5th intercostal nerves. Some massage therapy on that area of the spine might also help....0
