Lumpectomy Lounge....let's talk!
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I had a lumpectomy last Sep and really it was not very hard to recover from - I was pleasantly surprised. However one margin was not clean so four weeks later I had another. This was even easier to recover from because no lymph nodes were taken out - I was fine in two days. But guess what!!!??? STILL one margin not clean! I started chemo though - my doc wanted that done. So I did six awful rounds of TAC. Then had my THIRD lumpectomy - which was nothing compared to chemo. A piece of cake. I think the nerves get cut or something b/c I didn't even have pain. However - amazingly - there's still a pos margin so now they are wondering if I need a mastectomy! My surgeon is excellent - best in the city, but cancer, and my case, is complex. I wrote a blog about it if you want more detail: http://amyjeanineadams.blogspot.com/2014/03/repor...
But I'm wondering - has anyone else had this crazy experience?
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Hi Everyone, Welcome all the new people, sorry you have to be here, but if you have to be somewhere this is a great place to be,
I have been silent still waiting for my insurance to approve the genetic testing that my new oncologist wants me to have. The doctor messed up something with the insurance the first time so starting over. WAITING is sooo hard.
I am a bit scared as I will be having my first mammo this Friday! My incision still bothers me and so I am wondering how much pain that will cause me. My cancer was found on my first ever mammo so I have not had many, so they do scare me.
Thanks everyone for always being with me in this crazy journey that I wish I could get off of..
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I will be having a lumpectomy in April. Stage 1, grade 2
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Amelia, I wish I could give you some advice but I'm just at the beginning of this journey and although I'm leaning more each day, my knowledge is very limited.
Surgery was Thursday. I finally looked at incision yesterday. I'm internally stitched and externally glued. Frankly, it looks pretty good. bit longer than I expected and closer to my nipple than expected, but I'm okay with it (like I have a choice lol!) Surprisingly There doesn't seem to be much volume taken from my breast. I know the radiation will make the most noticeable size change, but I thought I'd see more now. Maybe still swollen? I'd a bit nervous about pathology report. Worried it will change from non-invasive to invasive, worried about clear margins, worried it is in reality much worse than they originally thought. Most of my worries are far fetched, but they are there. I'm taking the rest of the week off. So very thankful I had the days to do that. I feel extremely protective of my left breast, keeping my arm bent around it almost as if it is broken, to shield my tender, healing breast. The pain has not been terrible. I've managed it all just with Tylenol. The "big" pain killers make me nervous, so I filled my script, just in case, but never took any. I was told not to take a bath. I assumed that I was just not to soak my breast in water, though a shower was permitted. I even asked the nurse, she thought that was correct, so yesterday I covered my incision with a waterproof patch to protect against splashing and popped my lower half in the tub. Felt wonderful to shave my legs and relax in hot water. I cover my incision for showers too. I was told I could get it wet, briefly, but I have this silly notion that it will heal better, and look nicer (as if anyone will ever see it!) if I keep it dry for a week or two. That is what I've always been told in the past so I'm going with it.
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motherofone, so glad you are beyond your surgery and moving on with recovery! My surgery will be on Wednesday, March 19. I share the same worries as you regarding the pathology report. So many of my other tests have indicated I should look for good results, but the mind still causes the worries for what the actual pathology report will show. So glad to hear you are managing the pain well. Also glad to hear you were able to shower so soon, that was one of my other major concerns. Be sure to take it easy and relax and let the healing begin!
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Hi Mother and Wampusi, Debz and ndgrrl.
I took off the big bandages on day 3 and had a shower. I did not keep it dry and it felt so good to get the antiseptic they had used off my breast. I started the wall walking in the shower and had no problems with it. I had a bath day 5.
My breast looked about the same to me except for the steri-strips and the scar. By day 7, my lumpy side was bigger than my other side, because all of my body was sending good stuff to help heal and it had no way to exit the area yet. This was a little scary, but my surgeon reassured me. My lumpy boob remained bigger for about 2 weeks then started to subside. The white cells and lymph system had done their work.
Motherofone I also don't like pills and didn't take them, except one at night to help me sleep. I sleep on that side so found I kept rolling on the poor thing and waking up in pain. So I propped a bunch of pillows around me, took a pill and laid on my back.
Wampuscat, it's not so bad. It's the waiting that is really hard. Waiting for appointments, waiting for results, waiting for everything. You get through it tho.
Debzjourney that had to be the shortest post in this site. Lol. You've come to a good place. Don't be afraid to state your opinions, fears or joys. We're in your pocket.
Ndgrrl, insurance hassles are the worst. Sorry you have to go thru that as well as a lumpy. Hope your oncotype comes back with a good number. I'm a 28, so for me it was Tamoxifen immediately, no chemo (it wouldn't help) and rads.
Well everyone, 4 boosts to go and I'm done like dinner!!!! Although a burnt dinner. I gave up half way through rads, I was so tired and I found it hard to concentrate, so I stopped working. I have been off 3 days now, I go back next Monday. Fly out to Vancouver on Tuesday for a conference, back again on Saturday! Busy first week back to work. Lol
Keep smiling and remember, we're in your pockets!
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Hi,
The genetic testing I am waiting to be approved is the oncologist feels my sister who died at age 44 of diffuse gastric stomach cancer had a rare type of cancer for someone so young and says that now it is genetically linked to stomach- colon and lobular breast cancer. If I have this gene I have an 80 percent chance of getting those types of cancer and my children and siblings will also need to be tested. This gene is called the E-Cadherin gene. If I have it they suggest I remove both my breasts as well as part of my stomach. so its very scarey and the waiting is driving me batty!! The doctor suggested I have this way back in December. grrrrr
I had an oncho score of 18 so no chemo for me- but I did have internal high dose balloon therapy radiation.
Good news is I did get a job, though part time it keeps me busy
There are still many major hard feelings over my past employer eliminating my job while I was on a month medical leave. I just wish FMLA could help the smaller business worker. I was told since there was not 50 people in my line of work within 75 miles they could not help me. That really threw me for a loop, and I do miss my old job. I worked with senior citizens and they were a lot of fun:) 0 -
Wow Red! You're an inspiration! My surgeon used NO bandages. Surprised me, but nothing! She said she didn't want any moisture there so just the internal stitches and glued outside. Sleep was tough the first night. I fall asleep on my side and end up on my back by morning but I could not sleep on either side, because me breast moved to that side and it hurt. Interesting to know about the change in size. It helps me so much to know what I might expect. What is "Wall walking"?
Wompuscat, you and I are on the same course. The surgery was MUCH better than the biopsy and the seed implanting. I was quite happy to sleep through the whole surgery thing and wake up with it all over. Seriously, I left the surgery center and headed straight to the mall with my mom and husband for lunch and some light shopping. Okay, I know that sounds nuts, but the nurses said I should do anything I wanted, and retail therapy was what I wanted! I didn't try anything on and I only lasted lunch and one store before the adrenaline wore off and I was ready for the 45 min car trip home, but I was really invincible that day (or so I felt) on the drugs they gave me at the hospital. When everything wore off around 9 that night, I was super sore, but just went to Tylenol for comfort.
One word of advice is pick a good bra for after surgery. It will be your new best friend. The thought of taking it off for a shower is frightening. I'm not big chested in the slightest 34C, but let me tell you, the support is wonderful! I got a great (but ugly and expensive) one at Soma. So glad I did. It was worth it! I was told to get something tight. A sports bra was suggested, but I find the racer backs uncomfortable and tricky to get on with the soreness.
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Thanks Red! I'll 2nd that, you are quite the inspiration to all of us! Love your sense of humor in the midst of it all too! Sounds like you are almost done with your treatment! I'm sure you will be celebrating!
Motherofone, loved hearing that you thought the surgery was better than the biopsy. Looking forward to being asleep for this one too!
Concerning the bra after surgery, were you able to handle the back closure yet without any major problems? Or do you recommend a front closure bra?
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No, actually, I'm not an inspiration. If you had any idea how often the ladies here had to hold me up and support me, you would be shocked. These people here and at home are the inspiration. They keep us from wallowing when we feel bad, they celebrate with us when we feel good.
About the bra though - I tried 4 or 5 before I settled on the Walmart Special. It's 3 sports bras for $15. I had to buy them bigger than I normally do. Ended up with 9 of them in 3 different sizes. It was ok though. I liked the sports bra cuz it was over the head and I was scared of LE and wanted to exercise my arm etc as much as possible.
The wall walk that I did in the shower was to place my hand in a comfy spot on the wall beside me. Then I walked the fingers up as high as was comfy then back down again. Each day I got a little higher till I had my full range back.
Hugs'n'kisses
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I must have been very lucky when the bra fairy came around. My surgeon (a woman) ordered a surgical bra and it was already on my when I work up after surgery. It was totally adjustable with velcro, and fastened in front. The nurse called ahead of surgery to ask what size I typically buy so it would be right. Wouldn't hurt to check.
Edited this to spell velcro right. Velcrum just didn't look good
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Well surgery is behind me. So very thankful! My hubby was with me throughout the day offering his support. The day went very quickly and wasn't really too bad. Just before we left home for the Women's Center where I was to go for the wire insertion procedure, received a phone call that the surgeon had a cancellation so they wanted to move mine earlier. That was fine with me. Would mean less time sitting and waiting around. The wire insertion was a piece of cake. For me it was much easier than the biopsy had been. From there we headed to the hospital for the remainder of the day. Soon as we arrived they took me back for the sentinel dye injections. Those were not the most pleasant bee stings, with no numbing, but I took a deep breath and survived them just fine. Next off to prepare for surgery. As soon as I was all prepped I was off and rolling to surgery. Next thing I remember I was in recovery. The surgeon told my husband that the tumor was a little smaller than expected and that the nodes looked good visually, but of course we will wait on the final pathology report for the official news. Have only needed 2 of my pain pills so far, none today yet. Hoping to get by with just regular Tylenol from this point. Taking it easy and letting my family pamper me. One more step on this path is behind me. Hoping and praying for a good pathology report to see what the next step will be......
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Wampuscat, I've typed two responses and frustratingly both disappeared when I absentmindedly hit return twice to move my spacer down! Uggh! Well, two days later, I'm attempting to respond again! Congratulations of surgery! I do hope your recovery goes well! So happy to hear your wire insertion went well! Bravo! Well done!
Hope the bra situation worked out. Mininiemi, wow you really did strike it rich with the bra fairy. I'm jealous! lol! How nice of your doctor! To answer your question, Wampuscat, I ended up with back closure. My lymph nodes were not biopsied which might have made a difference. I did not want a regular sports bra because I didn't want to have to pull bra over my head. I did purchase a front close (Zipper) from Victoria, but found it to be scratchy under the arms so it is going back.
I got my pathology report back. The cancer has moved (microscopically) from the ducts which has moved me from stage 0 to 1. It also mean that now I need to have my lymph nodes checked so I'm scheduled for surgery #2 next Thursday for lymph nodes. I did not realize a lymph node biopsy meant removing the whole lymph node. I thought a biopsy was just a piece. JUST when I think I'm getting more knowledgable, I'm thrown some new information I hadn't expected, but thought I understood. My surgeon does not investigate lymph nodes with DCIS regularly. She said had explained that it required a second incision and with DCIS is generally not necessary. Hence they were not checked during my surgery last week. Well, since the cancer was found by the pathology to now be outside of the ducts, the lymph node biopsy must be done. I'm scheduled for next Thursday, 2 weeks from last surgery.
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Motherofone, sorry to hear you have to undergo another surgery so soon. And yes my surgeon removed 2 or 3 of my nodes. I'm not exactly sure. But will find out when pathology reports come in. Still haven't seen my incisions. Have to leave on the bandages until tomorrow, then they can come off and I can shower! It does sound unusual that you would need to do that for DCIS, but I'm sure the doctors know what they are doing. Hoping all goes well for you next Thursday!
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Wampus, so glad your procedure is over and you are recovering. Thanks for sharing the experience. I will be having the wire insertion before as well. In fact my DX is almost identical to you.
Motherofone, sorry you have to have more surgery. I hope all goes well.
I am in a real dilema with bras. I am overweight and wear a large size.(DDD) the plus size store I shop at no longer carries snap front leasure bras. Any ideas?
Also curious if anyone had doplar done on their legs before surgery. I have bad varicose veins and am afraid of blood clots.
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Hi Lumpies
Motherofone - sorry you need more surgery...ugh:(. We will be in your pocket with fingers&toes crossed...sending confident thoughts&prayers.
Wampum - yippee! Done...healing thoughts...happy dance shoes are on! Enjoy that first shower...ah
Debzjourney14 - do you sew? Creative? Tonight work the underwire out...than sew a zipper in the front of your bra...modify...and if possible purchase a larger yes larger and have seamstress at cleaners alter...have you asked your BS? They may have surgery bra...ask! Your insurance should provide a fitting for a bra so pre visit fitter. No idea on doplar.. Hope the gra fairy finds you!
Ndgrrl - yippee! A job
)) congrats!TGIF
(((Hugs)))
Cindy
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thanks for the suggestions. I do sew a little. I probably could modify.
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Debzjourney, After reading the post about Walmart bras, I ran to Walmart to see if I could find one cheaper than the $50 type. I was pleased that I did find a couple of possibilities. I'm not large chested (34C) but noticed that the larger sizes (DD ...) had some nice options. In fact there was one there JUST like my Soma one, but I couldn't find it in the smaller sizes. With that being said, I'd give Walmart a try. I have to go to a function with my husband tonight and will need to wear strapless. I'm so nervous! I found a possible bra at Walmart for the function, but I'm not looking forward to it. I really need the support of my straps! My surgery breast is also now a little larger than my other side. It was good for me to read posts on here about it so that I could expect it.
I'm thinking that I'm no longer DCIS since the cancer was found outside of the ducts. Yet another question for my Breast Surgeon. Isn't that basically the difference between level 0 and 1? Does anyone know the common amount of nodes taken? I'm thinking she is taking just the Seminal Node (another specific question for my Tues. appoint) but perhaps she will take more. My head is just buzzing.
I'm really worried about Lymphedema. I asked my surgeon, she told me about 5% of women experience it after lymph node surgery. Thoughts?
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hi motherofone! (I'm also a mother of an only child :-)
Your doc is right that your risk for lymphedema is low, but it's still a possibility. Ask your breast surgeon to refer you to a physical therapist who specializes in lymphedema. I saw one for a few months -- she took measurements and showed me massages to use (that I fully admit that I don't do much!) and also signs to be aware of. So far so good.
I could be wrong about this, but I think they take the amount on sentinel nodes that light up when they inject the radioactive dye. From what I see in the profiles here of those with early stage BC, it seems the number is between one and three.
Yes your Dx likely changed from stage 0 to stage 1. Was it ER+? If so, Probably the only difference will be that your MO will strongly recommend tamoxifen or an AI (depending on where you are in relation to menopause). It seems sometimes women with DCIS can skip the tamoxifen.
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Lymphedema can occur after ANY surgery or trauma. It does not require any nodes to be removed but the more removed the more likely often. Unfortunately, even today, many Drs who deal with all the forms of BC, do not really know about LE.
Ask for a referral (all should be given one shortly after surgery) for a Certified LymphEdema Therapist. Not just some PT who claims they 'know all about LE'. A CLET can be either a PT or an OT but either needs the Certification/education to safely deal with LE. (My Guy is an OT.)
Come to the Lymphedema section to ask your questions. There are many well versed women there who are very diverse and are ready/willing to reply.
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Wampuscat so glad your surgery went well. I felt much like you after surgery. And, I, too, thought the bee stings were the hardest part of my surgery day. Use your pain meds when you feel the need, there are no medals for totally skipping them. Pain does not help overall healing.
Motherofone - so sorry you are headed back for the node biopsy. Hope it has great pathology news for you. I'll hope it does since the invasion out of the ducts was microscopic.
Those genie bras or a similar one by Just My Size for larger "girls" worked pretty well for me right after surgery. Then I went free boobing during radiation. There is a $50 front close called Hannah by Amoena that has pockets to insert prothesis in if one has them. I wear it without anything in the pockets. The straps are also hooked in the front and can be opened as in a nursing bra. It's pricey, but I mention it in case someone is interested. I was hopelessly lost searching for a new bra and the nice sales clerk got the idea instantly and pointed me in that direction. I still like the surgical bra the bra fairy put on me during surgery before I woke up!
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lots and lots of bras on amazon and with speedy "drone" delivery you can have it in no time. For those who worry about getting the sporty bra all "rolled up" while putting it on or difficulty maneuvering and back closure I offer this "trick"- any of the bras that have a lot of stretch can be stepped into and pulled up. Much easier on those first post-op days
As far as sentinel node bx- once you have either dye or radio-isotope injected it circulates in your system. They use a machine to detect the nuclear medicine or observe the lymph node(s) that are stained blue and remove them. Personally I had 3 lymph nodes removed during my node biopsy- still have some residual numbness around the area of incision.
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Day 3 following surgery and am feeling pretty good. Removed the bandages yesterday and showered! Yeah! What a relief that was. No real pain to speak of, just some soreness and itchy sensations around the incisions. Numbness under the armpit area. Feels like my chin does after leaving the dentist when numbed for a filling. Started a few arm exercises yesterday and they are going very well. Almost full range of motion! Just taking it easy though, don't want to overdue and have a setback. Will see the oncologist this week on Wednesday for the pathology report. Another time of patient waiting.
I found a post surgical bra on makemeheal.com. It hooks in the front and covers both of my incisions nicely. I'm very happy with the fit, almost feels like a sports bra.
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Wampuscat, Full range of motion! That is terrific! Hope that is me next week 3 days after my node(s) are removed. Wishing you all the best on your pathology report on Wednesday. I am currently at a convention with my husband and daughter. I'm limited to what I can do, so no swimming at the lovely pool. But the rest has been good. I was going to cancel, but my dr. said to go and relax which is what I have been doing. Well, today my husband and daughter are horseback riding, which I can not do yet, so I opted for the hot air balloon. I thought I was good to go, but then the guy mentioned that once a guy had gone right after surgery and if the landing was rough it would not be safe. I swallowed hard and never mentioned that I had just had surgery. I'm afraid he would have kicked me off! There was NO wind so we had no problems at all. The ride was as gentle as an elevator! Check off hot air balloon from bucket list!
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O Motherofone, that's on my bucket list too. Funny how much I've been thinking of what I want to do in my immediate future. I have always want ed to see Italy and there is a tour that is going in June. I'm seriously thinking I'll go.
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That's wonderful motherofone! Hoping all will go well for you this week when you have your sentinel node surgery. Sounds like you had a wonderful and relaxing weekend. Good for you! You deserve it! A hot air balloon ride sounds wonderful!
Red, hope your first week back to work went well for you and you are healing from the last of your rads.
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momofone, how cool! Just think, if you hadn't had stupid breast cancer and surgery, you night not have taken the hot air balloon ride! Gotta put a positive spin on things
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Hi, mammogram went well, no cancer found! Yea! I had never had one before they found that lump last summer so it was really scarey. The affected girl did well
.. I also had an ultra sound of her as there is a cyst they are watching in her, it is right next to where the cancer was and why they didn't take it out at the same time, I have no idea! My new oncologist wants a mammo and ultra sound in another 6 months. He promised me that after the next ultra sound if I if having it is still bothering me he would recommend me for a MRI or a biopsy at that time. I really do like my new oncologist. I can talk to him and he listens and answers. I finally did get my blood work taken for the genetic testing they want me to have because of my sister passing away at 44 with gastric diffuse stomach cancer. Now I wait again for the results.. Waiting is soooo hard.
I was dreading my first mammo after my lumpectomy, afraid of the pain. I took some advil before I went and it was not bad at all.
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Terrific news, ndgrl!! So happy for you and so glad it all went well.
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Wampuscat, just finished rads Thursday so I don't actually go back till Monday. Then Tuesday I fly to the west coast for a conference so it's going to be a strange first week back. But thanks for the happy wishes.
Ndgrrl, glad the mammo went ok. Sorry you are still awaiting results tho, that's always so tough.
BigD, how's it going?
Nite all.
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