Lumpectomy Lounge....let's talk!
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Also, how do people add their diagnoses, etc. at the end of message? I put the material into the forum but I can't see it appearing on my message?
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EdithMary, I had a small (1.2 cm) tumor removed at the end of August. I developed a thumbnail sized hematoma. As the hematoma went away, the entire lower half of my breast turned yellow. Gross to look at, but it was the blood reabsorbing. I still have some inflammation on the outside of my breast. My radiation oncologist said it was normal, and will gradually go away in a couple of months. If it still bothers you, check in with your doctor. To include your personal info at the bottom of each post, click MyProfile in the black bar at the top of your screen. Then click on the Personal Info tab. In the paragraph right under personal info, there’s a link for settings. You can then choose how much info to share. And 17 grandkids- WOW! Holidays at your house must be wonderful. Wishing you good healing!
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Thank you, GreenHarbor! I guess that if a tumor and hematoma as small as yours can do that, then mine is in the ballpark! I think that I have added my info. We'll see if it appears when I post!
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Perfectly normal, EdithMary. The culprit is our old friend, gravity. After my post-surgical seroma formed (a racquetball-sized bubble of blood under my sentinel node incision) a brilliantly grape jelly-colored stain slowly crawled down my breast and torso. Over time, it turned brown, then yellow, then slowly faded.
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I had a very rare breast cancer to the left breast called Mucinous Carcinoma. Stage 1B, grade 1, tumor was 3.6cm, margins clear, lumpectomy surgery on July 18, 2918 to remove the tumor & lines out from tumor which was total of 5.5cm, just completed16 days of whole breast & armpit radiation. Started Anastrozole hormone pills Sept1st. I'm very concerned about any damage to my heart since it was my left breast, my radiation team didn't believe in the deep inspiration breath hold technique. I understand there is a real concern of heart damage from radiation to the left breast! Also I'm very concerned about getting lyphomdema! There isn't a whole lot of information on it & the doctors don't want to give me any information about it. Then there is the horrible side effects from the hormones! I'm in a constant stage of PMS! Crying, emotional, sad, anxiety, stressed & worried constantly that I'm going to die ofthe side effects of radiation & hormones & getting cancer back! Is anyone out there feeling the same way!?
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Sounds like you need to talk to your care team about your concerns. What kind of facility did your surgery and radiation? I am surprised that a breast radiation oncology tech "wouldn't believe" in the breath hold technique--especially with hypofractionated (stronger, due to it being only 16 sessions) radiation.
As to lymphedema (swelling, aka "edema," caused by pooling of lymph fluid), all of us who had nodes removed are at risk. The fact that you say "there isn't a whole lot of information on it" and your doctors don't want to give you any information tells me they don't know about lymphedema, and therefore you might want to look elsewhere going forward (as you aren't getting chemo and your radiation is finished). How far are you from a major (at least regional) university-affiliated teaching hospital with both a breast health and cancer center? You probably will be on only an every 3-6 month schedule with your MO (medical oncologist) and surgeon, plus mammograms. It might be worth making the occasional trip. (Maybe staying overnight at a nearby motel).
All aromatase inhibitors ("AIs"), of which anastrozole is one (the other two are letrozole & exemestane) work by drastically lowering the amount of estrogen your body makes (in fat tissue and adrenals) now that you're past menopause and your ovaries have shut down. The symptoms you describe, especially the moods, are from estrogen withdrawal--it's been only a little more than a month. Your body will probably get used to estrogen deprivation. If not, ask your MO about trying one of the other two AIs. It's possible one will give you less side effects--but until you start taking a given AI it's impossible to tell which one will be better tolerated by any given patient (but they all work). Sometimes even switching generic manufacturers can do the trick.
To learn more about lymphedema, check the threads here on BCO, as well as the website stepupspeakout.org and LANA (Lymphedema Action Network). Take common sense precautions: avoid sunburns and insect bites on your arm (in your case, L). Avoid hot tubs, saunas & steam rooms. Wear long sleeves or at least gardening gloves to avoid getting stuck on thorns or burs. Make sure any jewelry on that hand is not tight. If you plan on flying, get fitted for a compression sleeve. If your doctors blow off your concerns, seek a second opinion and perhaps see a lymphedema specialist or LANA-certified lymphedema therapist (usually an OT, or occupational therapist).
It's not uncommon for internists, primary care docs and even gynecologists to have had little-to-no training about the lymph system (which usually gets only 30 minutes out of a 4-yr med school curriculum)! But oncologists and breast cancer surgeons are usually better-informed. (If your surgeon was a general surgeon, that might also explain why your doctors are clueless about lymphedema).
Please go to the "My Profile" section, create a signature, fill in the diagnosis & treatment sections, and check the option to make them public (IIRC, as it's been awhile since I set mine up, there may be an option for "add to signature"). Good luck--we're here for you and we've all been there. GreenHarbor's post above sets forth the steps.
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Wanted to drop in an say I'm on the other side of surgery. Wire local without emla cream is fine. As long as ur doctor is good at numbing u up. I didnt have any pain with wire local and cldnt use emla cream it's part of hospital portal call. Then they wheeled me to surgery and by 4pm(guessing) I was in the recover room..I did have all level 1 and 2 nodes removed plus my surgeon took a few from level 3. I took gauze dressings off today. It doesnt look bad. Slight burse on breast but under arm looks ok. Now let's talk pain, that's difficult. I feel buring running up the back of my arm as soon as medication wears off. Plus a buring or pulling sensation as I reach down or across.. the medication takes a lot of the edge of but holy cow. That pain will make me sit down and cry. I notice even texting or simple things can be a little difficult but I'm only at day 2.
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urdrago71- I had a burning sensation that ran from my elbow up the back of my arm for quite sometime. It did go away, but it felt like rug burn. Yours too will probaly disappear over time. I believe it is from nerves being cut to get to nodes. Take your meds, rest and heal up. Gentle HUGS to you, you've got this.
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CindyNY, thank you for sharing. I will be dancing the day that pain subsides. Cyber Hugs back at ya!
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urdrago, the good news is that the burning sensation is due to a healing nerve; the bad news is that it takes a good while for that healing to be completed. However, it will become less intense and not continuously present as time passes. Just over 8 months since my surgery, I still have the sensation at times but I was prepared for that to happen after having post herpetic neuralgia following a case of shingles (doesn't mean I liked having it, just that I recognized what it was and that it would get better over time). Hang in, you will be dancing sooner than it seems like now.
Keep us posted!
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The sentinal node area felt like I was wearing a Brillo pad for the first few weeks, then it faded to mild annoyance, then nothing in recent weeks. I hope it doesn't reactivate when I have radiation, because that was really unpleasant! It took me a while to figure out that a soft cotton sock against that area helped -- and one folded in my hard-shell sports bra was comforting against the main incision, and the pressure prevented swelling.
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Did anyone start excerise or stretching the arm right after surgery or was it after drains come out?
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urdrago71- I didn't have any drains from lumpectomy. I was given stretching exercises to do for that arm soon after the followup visit with my surgeon. Wait for your surgeon to tell you its ok.
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I had a lumpectomy followed by radiation, no lymph nodes removed and I do have lyphedemia. It's not in my arm so much, but in my breast and up toward the armpit. Just wanted to put it out there that it's possible to get it even with you keep your nodes. 5 weeks of physical therapy and an inframammary pad under a sports bra to try to ease it - so far, not really helping.
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I'm 8 months plus post surgery. Taking Anastrozole, had radiation. Now i have osteopenia. Last month, I had a severe case of bronchitis. I was experiencing a lot of pain that I described to my pcp as starting at the breast incision area and radiating to my rib just under the breast. I was in quite a bit of pain, so she ordered an xray. Turns out, the rib was fractured/healing, so the pain was radiating up, not down. Apparently, I broke it from hard coughing. That was a month ago. It gets better, then small things re-aggravate it and I'm in excruciating pain again. (Yesterday it was holding my grandbaby. Before that, sneezing.) Has anyone else experienced this? Will this intense pain go away???
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Ribs take awhile to heal (Bob's broken them twice), and unfortunately there aren't really any support braces other than "rib belts," which are of questionable efficacy. Taping might help, though (ask for a PT referral, for instructions on how to do it).
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urdrago,
I had a lumpectomy and six lymph nodes removed. Like CindyNY said, wait until your surgeon clears you to exercise. Once I was cleared, I did do stretching exercises and then returned to using some 2 lb weights and also using the machines at my gym, both of which helped a lot.
You might ask if you can get a referral to some physical therapy, especially if your medical facility has someone knowledgable in lymphadema. I try to learn all I can and not do things that might harm me down the road.
Wishing you continued healing
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Thanks for information I appericate all the experience. I will follow up with doctor to see when I can start any mobility exercises. I've noticed today I can move my arm further away from my body, with my hand supported . which I believe is a good sign. Dont have strength to lift arm or move arm independent with muscles and tendons. Also the numbness extends to the back side of arm in the crease.
Do other also experience on going numbness after axillary lymphnode removal? What precentage of the area comes back alive?
Another question , how long did it take for pathology to come back after surgery?
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For me it was just under a week for pathology to come back after surgery, I think a week is average. I would also wait at least 2-3 weeks before arm exercises - double check with the surgeon. They gave me a pamphlet with instructions and that said 2 weeks for a lumpectomy and I was feeling better a week in and carried a few too heavy things on my surgery side and made the incision, which was all fine before, bleed - so don’t do that. Luckily it reheated but that took a few days. I’m 3 weeks post surgery now and was able to take a yoga class with some arm stretching and weight
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Urdrago, my BS told me that whatever numbness I had a year after surgery for the SLNB is what I would have forever. However, at 13 months, I regained nearly all feeling under my arm! Don't give up hope. I got my path report 3 days after surgery.
HUGS!
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pontiacpeggy, that's good news thank you for responding. I didnt realize til today that some ppl dont know what I'm talking about when I say level 1 and 2 lyphmnodes. So I'm attaching a diagram.
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Urdrago,
This is a nice illustration, thank you for sharing it.
Again, wait a few weeks, get some specific exercise advice.
I received my pathology report about five days after my surgery.
I did not have continuous numbing, but what I experienced was directly in the lymph node incision line. As I continued to heal and exercise my arm, the numbness faded away. So, as Peggy says, give yourself time, don’t get discouraged.
Continued good wishes to you.
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Healing enuff to get my Drain out on Monday. Got pathology back today clean margins tumor was 1.3 cm and 2/18 lymphnodes with cancer. So no surprises with results. Seems like a lot of nodes taken. Which I know they want to be on the safe side. Monday will be a check up, and then figure out the radiation. PT plan and I will be measure for sleeve. Then tuesday MO office for 2 month check up. I feel like this month will be a lot of office visits.
Sending everyone good vibes as we head into the weekend!
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Hi Urdrago71,
Our surgery is quite similar, though mine is on the right. I had a drain from the axilla for two weeks, it was so good to get that out. I had a fabric shoulder bag that held all the plumbing, and actually even went to work with it one day.
I was given stretching exercises to start the day after surgery. Flexing my arm, and stretching forward. Not above the shoulder until the drain was out. The nerve pain was pretty uncomfortable and weird, but after only two months I have regained a lot of normal sensation. That area at the back and inside of the upper arm was the worst, and there’s still some numbness there. My underarm is quite numb.
Just today I’ve been to a Lymphedema Physio. So glad I did! This has been a really big concern for me as I so love being active and able, of course. She has been really helpful and informative. Did baseline measurements to monitor any changes (especially as I’m scheduled for taxol followed by radiation to the breast) did lymphatic drainage massage and gave me heaps of exercise and management info. Exercise is really important for preventing Lymphedema, so I’ll be a good girl sticking to these exercises.
Hope you’re soon feeling more comfortable!
Xx
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hi SuefromSydney
I agree I cannot do much til i get this drain out. Monday is the day. But Im going to ask if I have Axially Webbing syndrome. I read complications of the surgery and for webbing or cording sounds exactly what im going thru. Cannot wait to get answers and take actions to release my right arm from pain.
For anyone not fimialr with cording see the link:
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yes the cording feels awful, Urdrago. I was able to stretch gently and also massage gently to release it, using plenty of moisturizer. I’ve got hardly any restriction now, two months out, so am grateful I had that advice. Roll on Monday
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This is my first post (just signed up) and I was so happy to stumble upon this topic as I was just diagnosed in August after calcifications were found on my routine annual mammo. Calcifications span 5 cm.I'm 42. Biopsy found DCIS, Stage 0- ER+ PR+. MRI found another area of enhancement they were concerned about but the biopsy thankfully was benign. Genetic testing shows BRcA negative. I decided, after a 2nd opinion, to move forward with lumpectomy and radiation. I had the radioactive seed localization done on Thursday- wow! My lumpectomy is scheduled for Wednesday 10/17. Anyone else feel a bit weird/nauseous after the seed localization? I had 3 markers placed. I felt fine the day after but last 2 days a bit off. Its been a crazy 2 months since I was first told my mammo was abnormal. The strangest thing I've found is how I swing from feeling overwhelmingly positive and "in control" to feeling overwhelmed by it all Did I make the right decision by going lumpectomy vs mastectomy??? Both surgeons I saw didn't plan to take a node- is that the right call?? I went through 6 unsuccessful rounds of IVF a few years ago and although multiple Drs have told me there is no literature supporting any connection- did I somehow do this to myself???? Anxiously awaiting Wednesday and praying that they get clean margins and that what they find is in fact Stage 0. For any who made it through this long rambling post ... Thanks for listening
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Kick0830, Sorry you are having to join the rest of us on this unchosen journey. Your reactions over the last two months are perfectly normal. Most, if not all, of us have had very similar swings of mood and thought. As you will find in comments in multiple threads on this site, NO you did not cause this. Also, a mastectomy cannot be undone but a lumpectomy will provide a lot of information you don't have certainty about just now.
Praying with you for the best of outcomes on Wednesday..
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Hello everyone, Just wanted to wish everyone here all the best. What incredibly strong women you all are! I'm not feeling so strong. Tomorrow I'll have lumpectomy for DCIS close to chest wall with sentinel node biopsy. I'm shaking right now and can't imagine getting through this. Ugh! The procedure scares me, the effect it's having on my elderly parents kills me and then the wait on biopsy results again will be terrible. Tomorrow the first give me 4 injections - a dye for a sentinel node biopsy -the BS says these will hurt - great! Then they insert a wire- lovely! Then I go to sleep for the surgery. I just have a lot of anxiety but will get thru it somehow
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