January 2016 Surgeries
Comments
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No chemo for me
I did convince the MO to order the Oncotype dx test though. He said he would - just for my peace of mind, but even if it came back intermediate, he would not recommend chemo.
I had my second fill today. No pain this time - I was prepared with ice packs but did not need them. I also met with the BS to discuss nipple removal and she said she could do it at the beginning of March. I have to hold off on getting more fills so that my skin doesn't get too tight.
StellaMaris- I hope you are recovering well from surgery today. Sending healing thoughts. -
Grandma3x - thank you for your healing thoughts. I sincerely believe in the power of our thoughts and the positive effect they have for all of us. The surgery today went well, and i have very little residual pain. Cuddled up with my better half all afternoon watching The Matrix Reloaded, lol. I will know on Feb 26th if this procedure cleared the margins. I am okay with either outcome, because I know i have taken the bull by the horns, and what is meant to be will be. Bless you all
this site has been such a comfort to me, and I appreciate from the bottom of my heart your well wishes and support. It is so easy to get lost in the stress and anxiety that this dx generates, and having this outlet in which to share and receive comfort is truly a blessing. whatever happens, you guys have been my lifeline. Thank you.
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Thank you Grandma3x and Moondust.
Been an exciting few days. An artery at the edge of my wound burst and I nearly hemorrhaged to death. Long, long story short: I started randomly bleeding on Saturday. Gushing. Called the ambulance, got sent to one hospital to stop the bleeding then transferred to where I had the lumpectomy done. Stayed overnight for monitoring. Got sent home Sunday, and when I changed to gauze (wet to dry wound care), it opened up again. I ended up having surgery to repair the artery. Was in the hospital 3 nights, received 3 units of blood to replace the 2.5 liters I lost. I am so tired right now! I feel like the cancer was the least of my problems. The docs all say they've never seen this happen. No problems since the surgery, but boy am I ever careful during gauze changes
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grandma3x: what wonderful news!
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Merymete, that is a SCARY story!!! I am so glad you were able to get to a hospital in time. There is always a risk to surgery, but you don't expect something like that to happen after 3 weeks! I hope all goes well from here on out.
Stellamaris, I'm happy to hear you did fine with the surgery. You are an old hand at it now. Sorry you have to wait so long to get the results of the margins, but I guess they are being extra thorough with the tissue they took out.
Grandma3X, glad to hear you won't be having chemo. I just got my Oncotype score today, and it was a little higher than I had hoped - a 26. I know a lot of people have chosen chemo with that score, and I was ready to say I'd have it, but my MO ran some other calculations on the OncoType website. There are tools available only to doctors that are fairly new and being finalized in clinical trials. She explained that the OncoType people realize what a hard decision it leaves patients with to have a score in the "gray zone" so they are developing new tools using statistics based on the thousands of women who have had the test. The new calculation took into account the score of 26, my age, size and grade of tumor, and AI hormone treatment instead of Tamoxifen. My risk of recurrence was calculated at 7% instead of the 17% based on just the score. I can live with the 7% and have decided not to do the chemo. My DH totally agrees and said he would make the same choice. Of course I'll brood about it all weekend and can still change my mind.
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Edited to provide accurate information based on what I think is correct about rin risk reduction
Grandma3x, yay, no chemo!!!
Moondust, yay, no chemo!!! I hope you enjoy your weekend. I don't think you can get much lower than 7 percent, although Tamoxifen or aromatase inhibitors for your hormone positive cancer can reduce the risk by about another 50 percent. Your love for vigorous exercise can lower your risk by as much as 30 percent my cancer surgeon told me. Someone correct me if I am wrong if any of these assumptions. Let's say I have 14.4 percent chance of recurrence with lumpectomy alone, and I had neg path for cancer that probably lowers my risk even more, I will lower my risk with breast reduction equivalent to Tamoxifen to 50 to 60 (maybe), so I will go for 50 percent which gets me down to 7 percent. If I can take AI drugs for five years, that probably lowers my risk by another 50 percent to about 3.5 percent.That is low risk, but if I cannot take AI drugs, I will have around 7 percent risk of recurrence. I can lower that risk by 30 percent with vigorous exercise may down to 5 percent without the AI drugs.
merymete, your story made me gasp. Take good care of yourself. I hope the rest of your recovery is smooth sailing and calm waters.
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Hello, Januaury sisters.
Mertmete, holy cow. I'm glad you are on the other side of that, how awful and scary. I'm so sorry you had to go through that, ugh.
Moondust, that is so interesting, that your docs were able to dissect out the oncotype score to make it more meaningful and specific for you. That's really good to hear, and I'm glad for all the no-chemo people!
I had a second RO opinion, and this one was also extremely thorough and thoughtful. He consulted with a pathologist in some other state who is an expert in post-mastectomy margins, calling him before even entering the room with me. His pathologist reviewed my slides, and he looked at my records and the (scarce) research that could be applicable. Bottom line is that after much investigation, both ROs think the potential risks of rads likely outweigh potential benefits for me. The last puzzle piece will be the MO who is see on the 23rd. She could still weigh in with an opinion that changes this recommendation. But for now, the enormous pressure and angst of decision-making seems to be easing some. The MO will decide if oncotyping is necessary also.
I saw an OT yesterday and she was SO helpful. She gave me a Swell Spot for compression under the arm, and started me on some stretches, measured my arm for baseline measurements, and will be working manually as well. I will be seeing her regularly in the coming weeks, and I'm so glad I have started therapy.
Happy healing everyone, and hope you are staying warm.
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Balthus, if you're concerned, I think either Nurse Practictioner or Physician Assistant would be able to help you. My BS uses PAs, my PS uses NPs. I've had to ask questions of both PA and NP along the way, and all have been helpful. I guess whomever you could see sooner.
Stellamaris: check in when you can. Sending you best wishes and prayers.
I had my last dose of antibiotics yesterday. I'm feeling pretty good. No more redness nor constant dull ache in my right breast. Although I think there may be a pocket of fluid at the site of the infection. It feels funny only when I move the right certain ways.
At 3.5 weeks from exchange surgery, and 2 weeks from infection, I still can't quite sleep on either side yet. So things are still settling and healing. I didn't do any of the shoveling this winter. I am building up my ROM and the weights of things I carry.
Despite my infection and pocket work, the exchange surgery is still an easier recovery then the MX. I hope that is encouraging for those who are doing reconstruction.
Grandma3x: I enjoyed the story of your dog and the car. Today is my dog's 4th birthday. His name is S'more. He'll get extra cuddles all day long and a few pictures on Facebook. He's a good little pal.
Mominator
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Hi all,
It has been a liitle over a month since my lumpx and sentimal biopsy. The lump divot hsd filled in and now is kind of hard and I still have weird bruising working its way out right around the aereola where they injected all the dye. Chemo begins next week, so that is a new set of challenges and lesrning curves.
Just saying hello! Stay strong ladies!
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Nearly forgot to mention, DecisionFreak, Grandma3x, and Balthus: I had reported the lost/disappearing post problem back on February 8, and just revisited the tech board again today to ask the moderators if there's been any progress. They have sent the info to the tech team.
I'll keep you posted on their progress.
https://community.breastcancer.org/forum/93/topics/787232?page=68#post_4639471
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Merymete - Goodness gracious, that is a very scary story!! What a good reminder to all of us who are trying so hard to get back to normal activity. We have had major surgery and need to be careful! I had surgery "glue" put over both of my incisions, and two weeks later it is still there and I am trying not to peel it off. It will start to come off soon, but I will be sure to let it stay as long as possible.
Blue Heron - Nice to hear you may not need radiation. That seems to be the only silver lining for those of you who had to endure mastectomies, so I am glad you get your silver lining. I am dreading the every day trip for 6 1/2 weeks, but it is a small complaint since I am not having to do chemo.
Mominator - S'more is adorable. Dogs are such a comfort all the time, but especially when we are not feeling well. I have a poo-chon named Griffin and he gets upset and licks my face when I cry, but I think I am done crying
Moondust and others with gray area OncoType scores - why aren't you asking for MammaPrint? There is no middle ground with that test. You are either low risk or high risk, nothing else.
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Finished my first week back to work
I have to say I love my job and it was so good to have a distraction from the 24/7 cancer channel running through my head!
Merymete - wow! It sounds like you lost a huge amount of blood! So glad you are ok!
Mominator - what a cute pupMy Buddy is getting on in years but still loves to play. He' a pound puppy so not sure of his pedigree. I tell everyone he's part dobie, part husky and mostly clown.
BlueHeron - good to hear that the radiation oncologists have agreed that you don't need radiation. What is a swell spot? I've been to 4 PT appointments and I think the stretching exercises have really helped. The last two times, though, I've had a student intern. She is very sweet but, bless her heart, every time she tries to manipulate my arm she causes pain. I ended up scheduling next week's appointment for later in the day hoping that I might get someone else. -
Grandma3x, a swell spot is a foam thing curved and formed to fit your body just where you need it. You wear it under a compression tank or bra or spanx or something. Mine fits exactly where I still have swelling, across my chest a little, under my arm and around a bit to the back.
Also, it's likely you are now on the student PTs schedule, and he or she will follow with you for the duration unless you request otherwise. Don't be afraid to speak up! It's your body. It's also how the student will learn what is too much. I would
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Wow, I go out for one night and came back to a bunch of new posts!
BlueHeron. It sounds as if your uncertainty is starting to ease. The MO in theory should defer the opinions of the ROs. And, of course, you have a say too. I hope that you give yourself a big pat on the back for going the extra mile.
Grandma3X, I am excited to hear that you are back at work! Go girl!! You have shown such grace and acceptance and intelligence throughout. As a scientist, you have brought great analytical skills to this thread.
Mominator, I am glad to hear that you are coping and that some of the post-surgery problems are easing. Recovery takes work, doesn't it? The plastic surgeon told me to eat plenty of protein to promote healing. Thank you for checking on the vanishing posts. Sometimes I hit save and then have to hit it again to submit the posts. I have lost many posts that I labored over. Adorable pet.
merymete, my heart goes out you. Please take good care of yourself.
chambo, I am wishing you well on your chemo that starts next week.
moondust, I hope you are able to feel comfortable with your decisions. You might want to ask about Tamoxifen or AI drugs as chemo prevention. I am going to add the exercise thread link because it is inspiring, and you will also be an inspiration to others.
Everybody, my second surgery was really a partial mastectomy. I guess it sounds paranoid but I will always wonder if the slides from the first excision were really my tissue samples. It is inconceivable that not one rogue cancer cell showed up in the final path report. My sutures look good with no infection that I can see. The swelling is starting to go down. I went a church event last night, and it was a blast! I didn't realize I was sitting at a table of all single women. They all seemed somewhat desperate to get married. Our church high priest, who is my mother and brother's physician, said to me in a conversation, "You need a husband." Lol, I am 61 and have made it this far without one. I told him if he would drag the candidates to my house that I would look them over. I pressed him to make sure that he wasn't thinking that a husband was the only important thing that I "need." No, he said a job, too, etc. I am permanently disabled but the breast reduction and lift could realign my neuromuscular system and the fibro might resolve. Don't think I could go back to the heavy lifting jobs of my youth. Towards the end, I had gained enough expertise to lead a company, and that frequently means going home at 5:00 pm and letting everyone else work late. It has been many years since I worked full time so I am not sure I could even get a job as a greeter at Wal-Mart. Not putting down Wal-Mart but I wish the company paid its employees better than it does and gave them benefits. Anyway, one of the married men asked me to dance. He is very sweet, but I had to say no because I was afraid he would swing me around too hard and bust open these new breasts. The women in my church are confident and strong, and they are not always looking around to see who their husband's are talking too. It has been years since someone asked me to dance. I am very blessed to have made it through with what appear to be no complications. I do pray, though I am a skeptic with the intent to believe, and I never prayed to a higher power to take away the cancer. It was the best thing that has happened to me in the last 13 years. I can stand up straight now and walk tall.
So, ladies, no woman or man with breast cancer should accept being called a victim. We are warriors, not wimps. It takes great courage to keep going through uncertainty and them to realize that life will never be the same. As they say, it will be a "new normal."
My mother is still in critical care. She is on 100 percent oxygen. Some thing destroyed her lungs but the doctor does not have a differential diagnosis. He is afraid to do surgery because if he incubated my mother he may never get her off the breathing tube again. My mother is a warrior and a fighter. She is a great woman.
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Hi Ladies! Please add me to the list...I am just stumbling upon this thread. Had lumpectomy/lymph node surgery in December and then MX on 1/29. The recovery from lumpectomy/lymph went very smooth (even with 10 nodes removed) However, MX recovery is a different story. BS took drain out 1 week post op b/c of possible infection. So unfortunately, developed a seroma that now has to be drained by needle injection weekly. Still very sore under arm (side breast area) and pec muscle keeps flexing at odd moments on its own. Sometimes, it won't relax until hours later! Very strange feeling.
I am thankful for finding all of you and wishing you all the best with yourrecovery!
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Welcome Nolagirl! I'm glad you found us! I had my MX on Jan. 13 so I'm about 4 and a half weeks out. Hang in there - I'm sorry to hear about your infection and seroma but there is light at the end of the tunnel!
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DecisionFreak, I will definitely be going on AI as soon as I'm done with my radiation. The AI is factored into my 7% distant recurrence risk, so I know I can't skip it! I read what you wrote earlier about why your team decided no AI for you. I'm the same age as you, and I will be worrying about side effects slowing me down too. But I'm pretty determined to continue with my walking, hiking and working out even if it hurts a little bit more. Time will tell. I think it is very believable that no cancer cells were found from the second surgery. I have a feeling you'll be fine! I'm very sorry your mother is not improving. We'll be here and thinking healing thoughts. Where is the exercise forum link?
Mominator, I'm glad you are feeling better. S'more is very cute!! Thanks for keeping on top of the tech issues.
Chambo, my lumpectomy site has also filled in and looks like a balloon 1 month after surgery. I'm going to ask Tuesday if it needs to be drained. I hope it does not look like that forever. Chemo will be a challenge, but you'll get through it.
Virginia, thanks for the suggestion about Mammaprint, but I'm more of a numbers and percentages type of person. Even though Mammaprint only gives a Low or High rating, it is still a sliding scale, with some women at the high end of Low and some women at the low end of High. They just don't give you that information. I looked at the Mammaprint site and they don't even factor Tamoxifen or AI therapy into the rating, which certainly affects the long term outcome for ER+ cancers. I'm comfortable with my decision to not have chemo.
Grandma3X, what do you do as a marine biologist/biochemist? I'm very interested in all that stuff! I second BlueHeron's suggestion that you speak up about the intern. The PT needs to know that she needs supervision and more training, and you should not be subjected to pain due to an inexperienced intern!! When I had PT for my knee, my PT always checked with me about how the intern was doing, whenever I had one assigned.
Welcome Nolagirl and hang in there. This stuff is not easy, but it's so great to be able to talk to others in the same boat.
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I had my BMX on 1/29. I also had TE's placed (this was a last minute decision because my PS called me the day before and thought he could squeeze me into his schedule) My BC was in left breast and 10 lymph nodes were taken. My drains were removed 4 days ago. My BS says my chest looks great (and he was excited that he put a little extra saline in during surgery.). My PS says it looks great. My problem is that I want to claw them off and throw them in the garbage! They hurt or actually feel like a pressure cooker about to explode! They are hard like bricks. I can't stand for a bra strap to touch the underside of them. They spasm. They wake me up all night. My sternum is killing me. I have pretty good range of motion with my arms.
Any suggestions that I should be doing differently? Am I just a big baby? Should I find a long fitting compression bra/cami? Does it matter? My BS didn't think so. I drink water. Right now I wish I had never agreed to the recon and gone flat.
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Hi, Moondust, plz don't tell anybody, but the breast surgeon put out a hit and got rid of the MO that said no AI drugs for me. The old MO is buried with Jimmy Hoffa. I have a brand new MO. Long story, but AI drugs are back on the table because the breast reduction lowered my pain levels. The breast surgeon, minus the idiot MO that did a backflip on AI drugs in a unilateral decision that violated my Patient Bill of Rights, asked me at my post op if I would consider AI drugs. I asked Dr. Laura Esserman, who is known for being adamantly against over treatment of DCIS, what she thought about my taking AI drugs for 5 to 10 years. Dr. Esserman felt there was no harm in my trying the AI drugs or in taking them if I could tolerate them. I had a bone scan to see if I have osteoporosis as AI drugs can weaken bones. I have strong bones at age 61, so I am good to go. I need to work with the MO to see how much calcium and vitamin D supplementation and other nutrients I need to promotion bone health on AI drugs. My vitamin D levels tend to run very low. I will need weight bearing exercise and vigorous physical activity. I am a little concerned because I have arthritis in my feet in the toe joints and they hurt more than before the breast reduction. I have been sedentary for the past year since my mother's stage IV breast cancer diagnosis so I am sure that didn't help. One way or the other I will figure it all out.
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Melgirl...I know exactly where you are coming from. I am about 4 weeks out from my bmx with te. I can tell you that this last week I have been feeling better. During surgery they put in 180cc and I had a really hard first 2 weeks. My drains didn't come out till week 3. I just last Tuesday had my first fill up of 60cc and surprising to me it actually helped my discomfort. I go again on Tuesday for next fill up. Hopefully it is the same for you.
I wear a loose fitting cotton bra that closes in front. I had stopped taking the prescribed Valium at two weeks and was miserable. I went back to taking it night and it helped me sleep. I also did some walking before this cold snap and that helped as well. Hang in there...it has gotten better for me I hope it is the same for you.
I am just catching up on the posts. Glad to hear the good news that have been posted.
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Well that is very hopeful Jr114. Maybe I'll start my Valium at night again too. So you didn't do a compression bra? I tried a regular tight fitting sports bra and was in agony. I was walking before the cold snap too. I may go to the mall to walk. I have been terrified to even think of filling the expanders. I go to the RO next week but will be starting chemo 3/4. I just want the constant pain to stop.
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Melgirl...
I did not wear a compression bra because like you it caused too much pain. I have been trying different sports bras but have found the only one that works is by Hanes. When talking to PS he told me that the te will cause spasms but with time it will get better. I have also tried to eat more protein to help heal the muscle. I hope some of this will help you
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Hi All-
I had revision surgery on Jan 20th. I don't know where else to ask this question so I thought I'd try here. Is it normal to bleed a little, along the incisions? I can see blood underneath the steri-strips on both breasts. I'm not 100% certain, but I don't think the blood was there for the first few days after surgery. Actually, I only noticed it a couple of days ago. It may have been there all along, but I don't recall seeing it before. It doesn't appear that I'm still actively bleeding, but I'm wondering if I should be concerned. I'd ask my surgeon, but she already thinks I'm neurotic.
Thanks
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Iwannacookie - I don't know if the bleeding is normal, there was dried blood along my incision under a clear bandage. I think they used skin glue to hold the incision together. Anyway, you should definitely call your surgeon about it, especially if it looks like fresh blood!
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Melgirl - I didn't do recon yet, and my muscle spasms on its own! I hope it will dissipate in time (sooner than later)
Iwannacookie - I would mention to your Dr. Or even the nurse...just to be safe
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The pain under my shoulder blade/back rib cage is not bad enough that I feel I need to do anything, since I only feel it sometimes under certain circumstances. So, thanks BlueHeron, DecisionFreak, and Moondust, for your concern and suggestions. I don't think it was simply a muscle strain from lifting, though, since it has lingered too long. There are no visible differences on the skin, and no swelling where I feel it.
But now a new thing. Yesterday, just over 3 weeks after lump surgery, a dermatitis type of rash has developed over about a third of breast, from a little above the incision to well below it. There is also tad up under my arm near the SNB incision, but not much. And it itches. I did wear a different bra that I had not worn in a long time, so I don't know if I has some sensitivity to the material, and it was a less supportive bra too. Well, I hope this rash goes away before I start radiation in 2 weeks.
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Katja23 keep a close watch on that rash. Make sure you don't develop a fever and it doesn't feel warm to the touch. It it does make sure to contact the dr immediately.
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Moondust - thank you for the suggestion about PT. I have not seen any of the other therapists since the intern took over. She was working with me and one other person at the same time on Fri. I was going at 7:30 am last week and changed my appointments to 5:00 pm next week, so we'll see if she also changes her schedule. When they set my schedule, they assign me to a therapist, and she was not on the list I got for next week. As for my job, I research red tides (harmful algal blooms), but I collaborate with people in other fields and sometimes get to go on some cool research expeditions (camping in Antarctica, and diving to the bottom of the ocean in Alvin for example).
DecisionFreak - I'm glad you are going to give the AI a chance- my MO said that most patients have no side effects. I was told that Vitamin D helps (but be sure to ask the Dr. Before taking supplements.)
Melgirl - ugh! Sorry about your expanders! It seems every PS has a different set of rules and expectations. Mine said no bra after my surgery, so I just wore a camisole for several weeks. Hope you feel better soon! -
Wow, so many posts! And silly me wrote my last few posts while refreshing the screen while on the previous page.
Merymete: that is so scary! Prayers that never happens again. You're one tough cookie!
BlueHeron: between your RO/MO, it looks like you're closer to a decision. Best wishes on your treatment going forward.
stellamaris: good to see you on the other side. Wishing you a smooth recovery.
Grandma3X and moondust: yeah no chemo for you both!
Chambo: I hope chemo treats you gently.
DecisionFreak: glad you got out to your church function. Sounds like an interesting time. Saying prayers for your mom. We had a similar situation with our pastor and a ventilator. He was on the ventilator, and he wasn't able to wean off of it. That is a very tough situation.
Iwannacookie: please call Monday to report what you told us, and please call immediately if there is any fresh blood.
Nolagirl: welcome. I'm sorry to hear of your infection and seroma. My mom had her seroma drained several times. I hope yours clears up soon.
katja: I second Gardengirl's advice about calling immediately, and want to add please call Monday anyway about the rash. Your surgeon should be kept up to date on that.
Melgirl: you may be still swollen, and it sounds like your muscles are stretching and/or spasing. My muscles still have spasms when I am very cold (like the shivers). It does get better. Also, you can ask to have your fills smaller and more spaced out in time. You may want to come visit TEs - a Beginner's Primer https://community.breastcancer.org/forum/44/topics/819027?page=71#idx_2119 and Exchange City https://community.breastcancer.org/forum/44/topics/728266?page=1265#idx_37941
I haven't seen SVGsurvive here recently, so I sent her a message with our newbies and dates
Iwannacookie - revision surgery on 1/20
Nolagirl1126 - MX on 1/29
Melgirl - BMX with TEs on 1/29
Apologies if I missed anyone.
love to all,
Mominator
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Come to think of it, I had also had a much smaller dermatitis inflammation after my core need biopsy appearing only several days later, after I removed the band-aid. I thought it might have been irritation from the band-aid. but the area was a little larger and not exactly matching where the band-aid stuck. (It went away.) This dermatitis is similar in appearance, lots of little pink dots that merge together in middle of the area.
Fever? No, why would a fever accompany dermatitis? Warm to the touch? My breasts are always warm. I cannot tell if it's any warmer.
I'm pretty confident that I can tell the difference between dermatitis and an infection. I've had dermatitis before, and I once long ago I had a breast infection when I was nursing (swollen, firm, evenly red, warm, fever).I'm not really worried, but I was wondering if anyone else who is prone to dermatitis experienced the same thing post-lumpectomy.
OK, if it does not improve, I'll send a message to my BS.
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