Lumpectomy Lounge....let's talk!
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I agree with CeliaC...very emotional day- I too am a strong woman and the emotions were somewhat unexpected. I had to wait for a while for the wire localization because I had two biopsy markers and only one was cancer. They wanted to make sure they had the right one of course, and my doctor was in surgery..so waiting in between procedures caused me to melt down. When BS got to where I was in hospital to clarify with radiologist I was in tears- so my recollections may be somewhat skewed by my emotional state.
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I was so scared when I found out I have BC , now I looked back I felt like I just followed what the doctor advices and did what he asked. I had three MRI and three biopsy. One bad experience of MRI which I will never go back to that place. All I can say I was a tough woman this journey is more than tough for me to handle. I broke down cried so many times and I still do.
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Liz, you are not weak. This is SO overwhelming!! I try so hard to feel so grateful that my cancer was found so early and that there is so much research to help cure it. BUT.... I am having such a hard time with the uncertainty and the constant waiting.... I keep telling myself "if I just get to X date I will be okay". This has happened so many times and then I learn there is another test of something that pauses things.... I have really lost it a few times, it is hard and we understand. Let yourself be upset, it is okay, this IS hard!! I am finally at a place where I have made a decision on my next step and will be starting radiation next week. Such a weight lifted.
My advice is ask questions and be the squeaky wheel!! They immediately ran the estrogen/progesterone HER2 tests and set up the genetic mutation (BRCA 1/2 plus 18 others) consult. What they did not tell me was that they would want to run an oncotype test that also took 2 weeks. That was a sucker punch for me because I thought chemo was off the table based on my other results. That test took more than 2 weeks with insurance balking and causing delays. Ask for all of those tests to be done immediately. You need all of the information to make decision about the next step.
I so wished there was a "I found a lump and these are the questions I wish I aksed or this is what I should have done" manual. I should have pushed a biopsy, it took 3 surgeries to get clear margins because of course 80% of these things are benign and I am 39 so it should not be cancer. Well it is cancer. I should have PUSHED the biopsy and the 48 hour promise my cancer center gives to meet an oncologist upon diagnosis. I felt that it would be weeks before I could start treatment so no rush but the 4 week post surgery oncologist advice to get yet another test that would take two weeks was crushing.
We are here for you. We understand and it is so okay to be scared and upset. HUGS!!
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Liz, It is perfectly normal to cry and have anxiety thru all of this. I just wanted you to know it is all very doable in my last post. That being said, it is a very high anxiety time in your life. I am 4 years out since diagnosis but still get anxiety before every mammogram, whole body scans, ultra sound, blood work etc. So very afraid cancer is going to rear its ugly head again. So you are having very normal reactions. You can cry, scream, curse cancer here and we will all understand. (((Hugs)))
Jo
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I had a excisional biopsy done just about 3 weeks ago. I had wire localization with Mamo done in the morning and then i went to surgery. They took out 8.6x5.2x2cm tissue. The scar is about 2"and a bit. First of all, a week after surgery, BS told me to come in and he ripped the steristirps that were inside the incision. It hurt like Hell. Prior to that i was watching nicely over the scar. I took off the bandages a few days later and was actually waiting to have the steristrips dissolve, i thought that's how it happens.
After 2 days of the visit, i returned because i was in a lot of pain and BS draw fluid from the lump that was hurting a lot above the scar. Four days after that, I returned once more for fluid to be drawn. I mentioned to BS my nipple hurting, he did not think was interesting enough. But I kid you not, it's exremely painful. The incision, is to the left of the areola, so how does that work. I am using a pad in the bra ( you gotta do what you gotta do) to protect it from touching a/t. But I am aware of IT all the time. I am also feeling terrible knifing pain towards the nipple.
Also in the scar area, there is a slight swelling under the breast, there is still a tiny lump maybe with fluid, but what really hurts it's i think some hardness above and bellow the scar. Also there is still some redness and a tinsy dry pus. It's hard to know where the pain is coming from. If I touch the scar, i've been putting neosporin on it, it does not hurt really, but if i touch the hardness there is a lot of pain.
Biopsy came back as: Benign Intraductal Papiloma. Minute focus Atypical Lobular Hyperplasia. Fibrocystic changes, proliferative type with microcalcifications.
I've been trying to see in which thread I could get some answers.
I have a family history of BC. My DD has BC at a very young age. Having said that, how should ALH be watched. I am suppose to call radiologist tomorrow, BS thinks it's enough to have images in 1 year. I am concerned that it should be watched closer. He thinks i should pay him a visit in 6 mos and it's sufficient. But the original lesion, the papiloma was not a palpable mass, they saw something on the mamo, then I had US guided SNB. Btw it was ocult on US. So how is a visit in this case gonna help?
What is the word on ALH? ALH with my History? In the internet is full of ADH explanations but not for ALH.
And also if you guys could answer the question re: those pains after surgery, do you have it?
Thanks a lot.
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"Focus" or "focal" means a clearly visible discrete area distinct from surrounding tissue. (My abnormality on the fateful mammo was described as "focal asymmetry" which meant that there was a clearly visible spot on one breast that wasn't mirrored on the other). "Minute focus" means a small, even pinpoint, area--so the ALH was a very small part of your lesion.
Carcinoma is a malignant tumor of epithelial tissue; papilloma is a benign tumor of epithelial tissue, sometimes caused by a virus (but not in the breast).
"Intraductal" papilloma means it was confined to the duct. "Fibrocystic changes" describe tissue that apparently used to be normal (fatty & glandular). "Benign Papilloma" is a type of benign tumor that differs from carcinoma (cancer). Most breast papillomas are confined to the ducts and comprised of fibrous glandular tissue with blood vessels. They don't usually become malignant, but the presence of atypical cells slightly increases the possibility of developing a carcinoma in the future. In the case of ALH, it might become LCIS or more rarely ILC--but not usually. Most surgeons err on the side of caution and proactively remove such benign tumors, especially with atypical tissue, to lower that already small risk.
I should have mentioned that the Steri-Strips (and the surgical glue they cover) replace sutures on the skin. They do not dissolve but usually shrivel away from the skin and fall off spontaneously in time, but sometimes not soon enough for some doctors, who remove them after 2-3 wks if they haven't fallen off. There are also dissolvable internal sutures beneath, which sometimes try to work their way out through the incision. They can feel like sharp painful pimples, often develop blood blisters or even become infected (hence, the pus). It's not that the Steri-strips shouldn't have been removed at all--but rather not ripped away so violently (especially without a heads-up that it might hurt). Sounds like you might want someone on your care team with better bedside manner and people skills.
"Proliferative" type means that its cells appear to be the sort that can divide steadily, growing the tumor. All cancer cells are proliferative, but not all proliferative cells will become cancer (in fact, most won't). Absent other symptoms or sudden urgent problems, removing the tumor and (after confirming it's benign) following up every 6 months seems reasonable.
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I have had a large seroma since my lumpectomy 6 months ago...my surgeon and oncologist said my body would reabsorb it in time. It now feels like I have a much larger flattened seroma spreading out over a larger area with hardening and discomfort. My breast feels heavy and sore. Might anyone know if this is the normal progression of seromas being absorbed or is it a mixture of fluid andscar tissue? I don’t see my oncologist for another month. Hoping this isn’t a permanent condition ☹️
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Thank you ChiSandy for all your support. Yes, i do wish he would not have ripped it 7days exactly post surgery, why would he do that? and yes, that little bit of a bump could be it's some sutures. Would be nice if a nurse, or PA would explain it to the novices what these things are about. i understand he's not concerned, but there needs not always to be a fire sometimes it's just a little smoke.
Thank you so much for the explanation on the ALH - at least i'll be a bit prepared for convo.
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Jagger - I am guessing the hardening is some scar tissue and could be fluid. Are you seeing a LE therapist? I have some hardening and thiickening as well and my LE therapist taught me how to massage the breast to loosen things up and get the fluid draining. She also has me wearing these foam pieces in my bra so that it is like a constant massage to keep things moving. This has helped so much. I would ask to see one if you are not already seeing someone.
LIz - praying this is behind you, but the injections were not bad. As they were injecting into the areola, another nurse was giving me fentanyl and something else for pain - I don't remember a thing!!! Prayers for all to be well for you.
momallthetime - I had something similar. could even see the "fishing wire" type sutures poking thru. The NP said it was where my body was rejecting them. it eventually cleared up.
Prayers and hugs all around.
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Ml1209 yes, i saw the wire, one was starting to role up, so gently i got it going, and cut a few ml. BUT the nipple, what's with that? And about the massage, that hardness really hurts, so you think I should be massaging it and it should get better?
Liz hope you got through the injection ok. They really should give you something to relax.
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momallthetime - when did you have your LX, If recently, I would not do any massage. I just started doing the massaging and had surgery in May and finished radiation in August ..... sp didn't start that until a ways out from surgery. . Call your dr and check in maybe.
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Those foam inserts are called Swell Spots and come in various shapes & sizes, to soften fibrosis in various places. They are covered in velour and quilted in vertical or radial patterns--the ribbing that results helps to passively massage the tissue over time until the fibrosis softens. When I had a swollen seroma under fibrosed tissue, I wore a bra day and night (leisure bra for sleep) with a Swell Spot tucked inside. At first, the large round one with radial "spokes," later a smaller oval one with vertical ribs. Took about a year.
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ChiSandy - My LE was actually out of those so she put small little pieces of foam into a pantyhose for me to use until she gets those in. Seems to be working quite well though.
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Liz1985 - I had my lumpectomy Thursday. No lidocaine for the nuclear injections, and I cried. Bee stings? Angry hornets injecting caustic, exploding dye! I am not a wimp, and for me, it was horrible. I am glad other people didn’t have a bad experience, but I recommend using all numbing medications available.
I get to go back for more surgery this Friday. Lymph nodes look good, but the pathologist wants more tissue removed to achieve clear margins. Yay me! 😬
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So sorry Meowmmy65 - take care. Hugs and prayers your way for clean margins all around on Friday.
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So sorry Meow .... prayers for you!
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momallthetime: my BS drained a bunch of fluid from my SNB incision site, could yours do the same? It really helped alot and now my lump is completely gone. This was last Monday (not yesterday). I would have a doctor look at your breast, to make sure there is no infection happening.
meowmm65 - I totally feel your pain and wish you luck on Friday. Mine next surgery is the 15th of November in hopes of achieving clear margins. For me it was another tumor - 3 in my breast so far. No lymphs like you though so that's good news!
VENT: I just need a vent/cry. I know I am being a baby and I honestly don't care. Yesterday I went for my pre-admittance for my second lumpectomy. All good till I seen what time my lumpectomy is at - 1:20pm!!!! Now I am a person that gets nauseous, headaches and very hangry if I don't eat or drink. Last time my surgery was for 10, of course they were running behind and didn't happen till almost 12, by 11 I was loosing my mind. How am I going to survive not having anything, not even water for so long? I know we can do what we have to do, we are stronger than we think, bla bla bla, but right now I don't feel very strong. I called the doctor's office to see if they could change it to earlier or earlier on another date, nope. They are just squeezing me in between gallbladder surgeries and changing dates wouldn't make a difference. I cried on the phone with her, I really hope she finds some empathy and can get me an earlier time.
Vent over.
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Thanks everyone for your suggestions. I actually did massage the hardness a bit, i don't think it went well, the whole night and now i have a terribel knife pain under the scar area, im gonna try to sooth it in the shower. There are 2 very tiny pus sites, but could that be called an infection? yes, they already took out twice fluid, this is a sharp pain it feels different than the fluids sites. Thank you.
Meowmmy65 so sorry you gotta go in again.
Vemp you could vent that's what this threads are for. How many hours before they told you not to eat? I know it's hard, but maybe you could wake up in the middle of the night and have something so you won't feel so hungry. Like a good ice cream... Also knowing you ate something might make you feel less anxious. So sorry ou have to go through it again, take care.
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vampeyes, I am the same way about food and coffee. When you check in tell the nurse and the anesthesiologist about being prone to headaches. They gave me something in my IV for it.
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Thank you Molly, I will do that for sure.
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Vamp, you MUST go in to surgery on an empty stomach (except for the tiny sip of water to take your necessary pills). Once you're "under" your esophageal sphincter muscle relaxes; and lying flat on your back, stomach contents could come back up and possibly "go down the wrong pipe" (aspiration). While conscious, you normally react by coughing it out before it gets into your lungs, but while unconscious you lose the cough & gag reflexes and definitely can't try to cough. Trust me, you will not be thinking about food--you'll be too preoccupied in the hours leading up to surgery. And you will be hydrated via an I.V.
If it makes you feel any better, I've been "NPO after midnight" many, many times--knee replacement surgeries, lumpectomy, GI endoscopies, colonoscopies. You will not starve. You will not get headachy (if you do, they'll give you something in your I.V. for that--even a little caffeine if you're a coffee junkie). When you emerge from the recovery room, they will feed you as soon as they're sure you're conscious, talking and able to sit up. They gave me a mini-bagel & schmear, OJ & coffee. I had my most recent colonoscopy at 3pm--and I was NPO after midnight the day before. Heck, once a year millions have to fast for nearly 24 hrs. (Yom Kippur). In fact, my lumpectomy was ON Yom Kippur, so it was "an easy fast" (which is what we Jews wish each other at the close of the Kol Nidre service on YK Eve).
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ChiSandy you make me laugh! Yes, you are right about that. There is such a thing as tylenol in suppositories, that could help you with the headache from the get go, ask the pharmacist for it, I've used it exactly for the reasons ChiSandy just mentioned, oh the yom kipur fast. No need to suffer. Her comment about fasting,made me remember this, it's worth a try. And good luck in getting the appointment you need. There one problem less.
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Vamp- Sandy is right. So important to have an empty stomach. My LX was was at 1:30, but I had to be at the hospital by 9AM. It truly does go so fast and they are busy doing things. My son had cancer at age 4. He has gone NPO so many times for his MRI's that I have lost count. Throughout my entire treatment I told myself if he took it like a trooper, so could I. He is my hero! And yes - they will feed you when you wake up. It is all just a blur to be honest. Hang in there.
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Vamp - I would caution you to have an "advocate" with you to ensure you are given something to drink and eat. My surgery ran very late. Was not in the "step down" surgical care area (where you are allowed to dress & stay for awhile until released) until sometime around 6:30 pm. At that point, I had nothing to eat or drink since midnight the night before. Nurse on duty not helpful (spoke to hospital rep who called me the day after surgery about this) and if my husband had not been there to press the issue, I would not have even received water. Something to eat never transpired.
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I had a reduction with my lumpectomy and still feeling pain on my cancer side. The breasts are not shaped the same. I can’t tell if the swelling is the cause of deformity or not. Does anyone here still have swelling or pain after 4 weeks post op? Any unmatched shapes?
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Blair2 yes, i have a lot of pain in my nipple. All of the time. It bothers me that i'm still busy with this. It's 3 weeks post op. Also i have a tiny little hole that does not close, it has pus in it, it's not woozing. And i just noticed a white patch with a red mark under the scar area? Did anyone ever have this? The scar itself still has a few places that have red patches, small but it's there. The area is getting a bit itchy, did you have this?
Also, the whole breast is really painful. I delayed calling the doc for a few reasons, believe it or not, i did not have when to come in, and 2nd i wanted to see if it goes away on it's own. I had gone back twice for a very painful something, it turned out he took out fluid, it was bloody i don't know what does that mean. But there is one little tiny like pimple at the beginning of the scar. The scar is about 2" . it's not red but it hurts if i touch it.
Blair2 are you going back to BS? Everyone seems to have different ways how to heal, so I still don't know if he's gonna pooh pooh it away...
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Momathleti - about my second week on the non cancerous side, while taking a waterproof bandage off after shower, a hunk of the waxy stuff they cover the stitches with, came off and it exposed a pink tiny 3mm hole, but seems to have healed over. It looked very raw and scared me that I ruined the stitching. Apparently not as my ps has examined me since. I would in your case, watch it closely for any oozing and just point it out to your ps next time you see him. I see mine every two weeks. I brought up the fact my left nipple was more “pointy" than the right to him, and all he said was that I was pretty beat up (where the tumor was) under there, and I took his comment that I needed to heal more. However, it's not settling down flat like the other nipple. This one was completely removed. Because it's pointy, it faces downward. There was a question prior to surgery of not being able to save it, but he did. Tumor was close behind nipple that made it questionable.
My nipples both hurt still, but the beat up pointy one is the worst. I always ask if it's still alive, and he says it's pink under there. I do have feeling under it, so nerveswere saved. That waxy stuff (I'm not Medical savvy on materials), is gray black and makes it rather ugly to look at with the combination of red, bruised skin. It's flaking off in spots. Now, I'm old, so my skin doesn't heal as fast - especially on blood thinners. However, no infections so far. I do have a 1" spot just close under the breast that doesn't hurt, but is puffed up like it may have fluid in it. Will question that next week. It might be irritated by the bottom of my sports bras. Isn't this just fun? Ugh!
Oh, I’m through with the breast surgeon, but still seeing the plastic surgeon. Next oncologist
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I recently read a book written by a breast cancer surgeon and she had some insight into this disease.
A long while ago, researchers found a mouse mammary tumor virus that causes breast cancer in mice. Since then, researchers have found a lot of similarities between the virus in mice and a human virus. If scientists can determine that a virus causes breast cancer in humans, they could create a preventive vaccine and save a lot of lives.
The book I read is called "The End of Breast Cancer: A Virus and the Hope for a Vaccine" by Dr. Kathleen Ruddy. The breast cancer surgeon also talks about her patients and how we need to prevent this disease. Check out Amazon if you want to get a copy of the book!
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Girl, I feel you and vent all you want. My lumpectomy was scheduled at noon, but they were putting the wire in at nine, so I had to be there at seven! Then, of course, there was a previous surgery that ran long so I wasn't really in the OR until 2:30. Still bugs me. My advice would be to go ahead and have coffee if that helps you (ok as long as it's four hours before surgery) and bring a good book to read. You can do it!
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I won't eat or drink. I will think of all the young, middle and old dealing with some kind of treatment and being strong. I will do my best to be strong too. Appreciate all the responses to my vent. I look forward to being in the treatment part of this life curve.
Sometimes I feel like because there are so many cases of BC empathy has been lost. I get my BC is not as bad as someone else's or may be nothing compared to what other people are going through, but damn it's still a lot to process and go through. I don't want to feel bad for being honest and saying something hurt like heck or for having a melt down over something that seems petty. Sometimes I don't want to be as strong or as positive like everyone thinks I should be just because someone else has it worse than I do. Is that what people are telling those people, "toughen up princess there are others that have it worse than you!" How about I am so sorry your going through this or a non judgemental ear, a hug, a shoulder to cry on, compassion, empathy. How about some answers or information from the medical staff instead of just asking me my birthday like I am a number in a long line of "customers"!
Sorry, feeling emotional this afternoon.
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