Lumpectomy Lounge....let's talk!
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Hi to my fellow lumpies sisters,
So sorry to hear about those of you with infections and good luck to those headed on to chemo. And welcome to those of you that recently joined.
Just thought I'd send an update. As you may remember, a couple weeks ago I found out I don't need chemo after all, (funny about that, I had so geared myself up for chemo, even going so far as to research what type of headcovering I would get, and studying all about the side effects, etc, that when My MO told me I didn't need it, in some strange way it was almost a bit of a let-down. Does that sound crazy??) At the same time, I am so greatly relieved that I don't need to go through chemo. Maybe it is survivor's guilt, thinking about my fellow sisters who are moving on to chemo.
Anyway, now I am getting ready to start RADs next week. Last week I had my CT and planning session, made the pillow mold, got my tattoos (ouch!). Monday I go for my trial run-through, then on Tuesday I start my 9 to 12 weeks of radiation treatment. (6 weeks on each side, but my RO said if all goes well, he may be able to overlap the start of the 2nd side, so may be 9 weeks?) We'll see how it goes. I really like my RO and the office itself, so hopefully all will go well.
I will be wearing big pockets on Monday, so hope you jump in!0 -
Hi aviva, sry your path after surgery came back bad and you had to have a bmx. After my initial shock of my diagnosis I bought a small notebook I keep with me all the time. I couldn't keep 1 thought in my head so I wrote everything down, my feelings, things that had to be done, my hundreds of appts(that's what it felt like lol). I had lists of questions for every dr I went to bs, ps, mo, ro. I questioned every test, every procedure. I spent hours online(still do) looking things up. But even with all the research when something is about to be done or start I feel the anxiety building.
Ty for saying I'm in good shape. My bs has said this to me from day 1. I can't seem to let it sink in yet and I need to. I have a great support system and I feel blessed I do. My role model my mom had bc twice. At age 35 and 42. She is still going strong now at 62! I'm 41 and a single mom of 2 beautiful boys 15 and 12.
What will determine if you have chemo or not? My mo used my tumor size, stage, grade and the oncotype score to determine I didn't and why I'm going to rads.0 -
Hi Cindy I never thought being called a lumpie would make me smile but it does! Thank all of you for welcoming me to this group of very brave women. I write all the time in my notebook and it helps but never answers me lol
I did want to say for those getting BRACA tested I think it can help in a diagnosis or surgery procedure but the BRACA I did last year(blood test) came back negative. I had a small lump in my left that ended up being a cyst. So this year in may when I was told another lump in the left my mind just went to another cyst. Why cause my BRACA was negative. Then after the core biospy came back IDC my bs did the Bart part of BRACA which also came back negative. That's what led to lumpectomy and not mastectomy. I did the reduction as well cause bs explained better chance of clear margins and the plus of both getting a lift :)Then oncotype dx test from surgical tumor with a low risk score of reoccurrence leads me to rads and not chemo first.
My bs explained even tho BRACA/Bart negative having my mom had bc twice at 35 and 42 my sister and I still had 50% chance of getting it. I'm 41 so right in between the ages my mom had it. So even tho I see the use for it it's not 100%. I could have some other gene other then BRACA 1 or 2 which is why I still got it. Or so I feel.
My cousin also is going thru bc. Crazy both of us at the same time. She's 43 and we are related thru our dads. She had a lumpectomy 8/22 no reduction and started chemo on 9/11. I kinda feel guilty I didn't have to. She has dcis stage 1 grade 3 no nodes. Her BRACA was negative but oncotype high. Her mo wanted chemo before rads.
I watch my mom a bc survivor who's helped me with my boys since my surgery then runs over to my cousins to help with her girls, they are much younger then my kids. I know I can get thru all this!
Sry my posts are so long!0 -
KR13--
Good job sticking up for yourself! We always know our own bodies best, and we know when the answer feels wrong (or right). Glad you pushed the issue, and good for your PCP recognizing what was happening!
Fephna --
Welcome to the Lumpies! We are all on similar journeys, and this board will be a great support. I had a lumpectomy with "rearrangement" -- not exactly reduction, but the end result was similar. Since the "bas girl" was bigger to begin with, we decided to see if Te final result made them roughly even. My PS says we will check in about 6 months after rads and see if the "good girl" needs to be reduced a little to make a matched set. Keep us posted on Rads -- I will probably be having chemo first, but will move on to Rads in December sometime.
Lumpies friends -- thanks to all of you for your support in my disheartening Mammaprint results. I feel (at least for today) like I have gotten to a place where I have my chin up and am ready to persevere through whatever treatments are now in my near future. In no small part I owe this determination and peace to the caring support I always get from you Lumpies sisters -- thanks!!!! Love you guys!0 -
Fephna -- there is a thread on these discussion boards regarding lumpectomy with oncoplasty, which you will find helpful. I have bumped it for you so it will show up in active topics.
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fephna, those are the things I think he will use to decide chemo or not. The oncotype is the test we are waiting for, my appt with him is Tuesday, finally. Im hoping to have a low score to help keep my odds of chemo down.
I also had "rearrangement", which is oncoplasty, on lx side, and reduction to match on non cancer side, in my original surgery. They came out nice! Then once I got the path rept and knew I had to do bmx they were just there mocking me for the next week! But that is an approximation in my mind Im aiming for ultimately in reconstruction.
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Just waiting for a CT or PT scan so that my onc will remove the port. I finished chemo in January, did rads until March and have been on Arimidex since March. Clear CT in June, clear thyroid biospsy/ultrasound in Feb, clear colonoscopy in July, clear mamm/ultrasound in Aug. Now the insurance is refusing the CT scan in Oct. They say I have no symptoms to warrant it. My doctor obviously wants it so trying to decide how much to fight the insurance company. (Aetna) Have any of you had so many followups requested by your doctor?
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L2girl - I did the same thing you did - I psyched myself up for chemo and when BS said no chemo RADS and HRT it took a while to really rejoice!!I have appt w/RO tomorrow and hope to start RADS at beginning of Oct. I'll definitely be in your pocket Monday. Good luck and hope we sail thru RADS.
Fephna - welcome to lumpies, we'll all join up in RADS!
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Canuck, thank you for making me feel I am not the only one to feel that way. Also, glad to see you also joined fall rads group. And thanks for being in my pocket tomorrow:)
School mom, I too had insurance woes. After my initial dx in June, my BS ordered Pet CT scan, and bilateral breast MRI, (which then led to ultrasound and eventually to MRI guided needle biopsy and a 2nd diagnosis.) if I wouldn't have had those tests, they wouldn't have found the cancer in the other breast. Yet my insurance initially denied the claims. They said pet/ct was not medically necessary, and part of the MRI was denied for some other weird reason. Well, for 2 months I worried about it, bec. those are really expensive tests. But, after they got more paperwork submitted, they finally paid it. So, hopefully your dr. can resubmit or write a letter or something? I do not have Aetna, btw.
Fephna, you and I wound a lot alike. I too always have a thousand questions, and research incessantly. I think my BS hates me. I think he thinks I ask too many questions. Also, my RO, whom I really like and trust, told me to be careful of what you read on the Internet. It is not always accurate. I am trying to heed his advice. Like you, I too worry a lot and get so nervous before appts. Writing in a journal is a good tool. I started writing in my BC journal after first dx, and it seems to help. Also, these boards and the people on them are a Godsend!
BTW, a little earlier there was some discussion on this board about genetic testing, etc. I tested BRCA negative, yet I also have a very strong family history, most of my relatives who got BC were late 40 s to early 50 s, and I am 47. One of them also had bilateral BC like me too. So, there must be a hereditary component, but not BRCA in my case.
Healing (((hugs))) to PatAlameda and Serenamuse and KR 13 hope your infections are healing.
And a big healing (((hug))) to TeamKim. Sorry your news was not better, but you will get through it. We will be there for you.0 -
Thank you all so much for the words of encouragement! I really appreciate it. You know at a certain point you stop talking to your friends because you just start to feel like they've heard enough and must be feeling like, "aren't you done yet?". I've cut up an old towel into little squares and have been dipping them in boiling water, air dry for a minute till I can stand it, then put it in my cami. I do this every half hour or so. Tomorrow I'll find out how much longer I need to do this. Have any of you healed with an open incision? I think the reason he can't close me up again at this point is because the infected sutures have to work their way to the top. If they use glue (which I did have on top) or anything to close it up, he fears infection will build underneath again and we will just have to open me up again. I guess one never really knows how their body will react to things... I have to teach in the morning. Still trying to figure out how to keep warm and wet in front of a bunch of college freshmen! I hope all the best for you and your healing!
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Hey. Hope everyone had a nice weekend.
Teamkim Ty for the welcome. I'm sry your mammaprint came back high. I only did a little research on that test incase I had to do it. Did mo give you the score or just said it was high? If you have to do chemo first it will be just one added step in this fight! Ty also for the bump on the other thread. Doesn't look like anyone posted there in a while so I will. There has to be others that had this surgery to.
Aviva5675 I will be sending good thoughts for tues when you get your results. For me it was agony waiting for every test. But your wait is almost over.
Canuck46 Ty for the welcome. I will be over in rads to. I still have a week before I start and I look forward to see how everyone is moving along.
Hope those with infections heal fast. You are all in my thoughts
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When my daughters c-section burst open from infection, they let it heal from the inside out. It was packed each day with seaweed as well as being flushed.
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Hello! New here - I'm four days post-surgery with bilateral lumpectomies and sentinel node dissections. I was beginning to think I was the only one who chose lumpectomies when faced with bilateral breast cancer, but I'm glad to see there are others here on the board, and that I'm not alone! I'm wondering about the dressings on my incisions. Since I had a very hard time coming out of anesthesia, I don't remember anything of what the post-op nurse told me, but I think I'm supposed to leave the dressings alone until Friday when I go back for the path report. Does this sound correct? In addition to the gauze bandages on both breasts and under armpits, there is a clear, saran-wrap type of covering over everything. I guess that's to prevent water from showers, etc. ?? I don't think I could get it off if I tried! On another note, are any of you completely amazed at your ability to "talk breast cancer" now? I never thought I'd ever know so much about one subject, and yet I know, still, so very little. Thanks for providing this board - wishing everyone a peaceful day!
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Hi Summergal -- I would call your surgeon's office and ask -- they should be able to tell you.
I didn't have the saran wrap type dressing -- just sticky white gauze covering non sticky gauze covering steri-strips. I was told I could take the outside dressing (everything except the steri strips) off after 48 hours and have a shower (I waiting 49 hours:) -- found it itchy). Then I had to wait 10 days to take the steri strips off unless they fell off by themselves (only one of the strips on the SNB fell off before day 10.)
I too am amazed at my basic fluency in breast cancer speak!
Best of luck on your final pathology -- I have IDC and ILC, but in the same side -- same hormone receptor status as you too.
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Welcome Summergal to the lumpiesX2!
Congrats on 4 days post lx&snd. Whew, there is so much to learn...catch your breathe, you are doing good. There is some comfort relief after surgery...the tumors are out and soon you will have path results soon. Fingers&toes crossed for clear nodes and margins.
Review your release info...Ridley sums up well what I was told...main dressing off 48 hours then BS will remove the steri strips 1 week out and then stitches 2 weeks out. Watch the arms...no overhead...careful on the hair and bow drying...I cut mine very short...no way DH could tame my wave baby fine hair. Hide the razor...especially if that is your mo in the shower each day...hid mine...used electric for legs...not as great but stopped me from saving my steri strips out. Oh the little things...SND will bother you the most give it time...watch the arms and clothing:(
Pamper yourself and take it easy...really you had double the insult...rest and recoup...we are in your pocket
(((Hugs)))
Cindy0 -
Hi Lumpies
Check Monday as done! Pockets are full with crossed fingers&toes for a week of healing, solid game plans, and peace of mind:)
Aviva - thinking of you...for tomorrow's appointment
Sernamuse - hope you are healing and next appointment is better
Fingers&toes crossed that all have healed...no more infections!
Yippee for those beginning Fall Rads! Hydrate! hydrate! And free boobing...emu oil, jeans cream, my girls, remember show and ask Monday and Friday calm happy skin:)
For those in chemo land we got your back check your pockets:)
Breathe, don't over think anything and don't get ahead of yourself...focus on today!
(((Hugs)))
Cindy0 -
Welcome summergal! we are a great group of supporters, so lean on us!
By all means call your surgeon's office on the post op instructions. I had to wait 48 hrs than could take off the bandages and take a shower. I didn't have the Saran Wrap stuff with my surgery (but did with one of my biopsies, and they said to leave that on for a week). I had a drain with my surgery, so had to figure out a way to shower with the drain bulb hanging from a hanger hooked over the shower head. I didn't have stiches externally, there were self-dissolving stitches internally and glue on the outside. I was told the glue would come off on its own, which it did after about 3.5 weeks -- by then incisions were healed.
Fephna and L2girl, thanks for the encouragement. Like Serenamuse I teach college students, so it is going to be an adventure working chemo and rads around my schedule, but my medical team is great so I know they will work with me to make it possible.
Have a good week all -- infected Lumpies, you are in my thoughts and prayers....healing hugs!0 -
Hi everyone, I just had my lumpectomy 3 weeks ago, they also removed 1 lymph node, which came back negative. I still have the steri strips, the stitches are self dissolving, the strips are still stuck on there pretty good. Is it normal for them to be on this long?
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One radiation treatment done...32 to go! I feel like I can see a light at the end if this tunnel!
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Welcome blessed sue! Congrats on lx&snd...yippee clear margins&nodes
but those steri strip...my BS removed them after a week. When do you see your BS? Call and ask the RN. Mine itched so...good luck and happy healing
Ooo who teachersc! 1 down...it does get easier and there will be a twinkle in your eyes when more days behind than ahead! Hydrate!
Go TeamKim! We're with you...hope your students are cool...so many are in their win worlds others are the greatest for moral support...:)0 -
Thanks RMlulu for the reply I don't see the doctor for another week. This morning the strips have started coming loose in a few places so hopefully they will be off by my appointment.
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Teachersbc123, that's great. I should be starting my radiation in a week or two. My first visit to the radiologist is on Sept 23rd. Do they do the treatment on the 1st appointment or is the 1st appointment for just figuring out the details? I'm new at all of this, I really appreciate all of the people on this site, it's been so helpful knowing others are on this journey with us.
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Blessedsue
My experience was the first time was a 'dry run' to be sure everything was positioned correctly. That was with internal brachytherapy rads.
From what I understand with external rads it too is for marking where they want the 'beams' to go.
Good luck with your treatements.
Another step forward to beating the beast..
Vickie
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Good Morning Lumpies!
Blessedsue - 1st rad appointment will be set up, films, marking you. Your tech will answer many if your questions at that time. The table us hard and it will take time with your arms up. Your RO may give you tiny tiny freckkes...tatts:)
The actual rads is fast...go in put on gown, lay down on table, tech check all measurements, they leave room, then beam on zip zap...about 30 secs each zap...with time as it turns off ad rotates into next field area. Breathe you will rock rads0 -
RMlulu- you always make me giggle so thx. Great description of what happens at mapping appt. When I put my hands over head and had my tush placed between two bumps on very hard table I asked if this was something out of 50 shades of grey - everyone cracked up! Also got my first "tatts" so I can tell my grandkids I got inked!!! (but they better not!!). Simulation scheduled for 9/30 and first RAD on 10/1!!! Hugs to all, M
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cunuck46 and RMlulu, I love your sense of humor. That's what will get us thru this. I told my friends that before the surgery I had my surgical team in stitches, then after that they had me in stitches. I really appreciate all the info, I love my surgeon, he's the best, but they didn't give me very much info as to what to expect.
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Hi Lumpies
I had good news my Oncho test came back at 18 so no chemo for me!! wow was that a long wait to get those results- whewww... I did have internal radiation last week and ended up nauseas and puking and my steri stips fell off so went to the ER and stayed a couple days in the hospital for dehydration and pain control and antinausea meds. I am slowly feeling better and next step on to the hormone drug Tamoixfen(SP)
Best of luck to everyone
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I'm a week past my lumpectomy and almost exactly a month from diagnosis. Doing the happy dance today after the surgeon called to tell me it was small, stage one and the margins are clean!!! Seeing MO next week to discuss next steps but current plan is experimental protocol that condenses 6 weeks of RAD 1x/day to 5 days of RAD 2x day. And they radiate a small area where the tumor was, not the whole breast. Does anyone have any experience with this?
Also, MO, RO and surgeon all recommending Tamoxifen. Side effects seem pretty awful (to say the least) compared to the risk. Anyone with an early stage lumectomy on Tamoxifen? I just turned 50 and peri-menopausal. Thoughts?
BC not a club I wanted to join but this community is amazing!!!
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Funny you say that blessedsue...Loved my surgeon (great sense of humor and VERY attractive!!) but also didn't have complete information. Nurse was horrified I had no idea about the needle loc, etc. Guess I should have asked more questions instead of staring into his big brown eyes ha!
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Hello B.C. Ladies,
I just finished chemo and continue Herceptin for 12 more cycles. RT begins mid October. How long does it take the radiated breast to settle into it's new "form"? I will likely have an "adjustment" so I'm better matched but am unsure of timing. I've heard everything from 3 weeks to 6 months. Any others out there who have had their good breast modified to match the CA breast? I have really small breasts to begin with, and just want to even them up.
Best to you all,
Catherine0
