Lumpectomy Lounge....let's talk!
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I wanted to pop in and say hi to all!!!! Haven't been on here for a while, but glad to see everyone. No way I could catch up on everything but hope you are all well!!!! I'm doing good. Just had my 1 year follow up mammogram post rads on Wednesday and haven't gotten any calls, so I take it as great news!!!! Guess I will get findings in the mail. Last time they had me wait while radiologist read the results the same day. I guess they only do that for the first follow up mammogram. Do you all get a call? Or do they just mail your results?
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Lovinggrouches, my MO's office called and I got my results in the mail. They don't keep you waiting forever for the results which is really nice. They get anxiety. Hoping for good results for you.
HUGS!
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Texasladybug- welcome! But yes .... sorry you or any of us have to be here. I am new and so thankful for these ladies.
Gardenerd/Kim -can't wait to be able to crawl in the bed and get comfy and sleep. Sleeping propped up in the corner of our sectional has proven to be the best for me so far. Kim - yay abt the bra! Can't wait for that. I have been sleeping in a bra since I had the port put in. My MO likes for the port to remain for a year after treatment, but since mine was not working well - I requested mine be removed when my LX was done. My BSO was fine with it. Hope and pray I never need it again, but if I do I would want a new one. I was always aware of it - always guarded with it. I don't want to live that way when treatment is finished. I understand what you mean as far as getting started sooner so you can get thru this. Some days it all seems like just too much.
Pontiacpeggy - how did you get your oncotype score to show in your signature? I thought I put mine in, but it never shows up.
Taco1946- have you lost any nails while on Taxol? My MO told me it may happen and sure enough - this week, I lost a toenail and am about to lose another one. Ugh. Any tips for promoting healthy nail growth?
IHGJAnn - prayers for a good report
I recieved pillows as well. Have been using over my port so the car seat doesn't rub ..... now using for the incisions. So sweet that people make those for us.
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Kim, my BS' NP gave me a "P3" (protective pillow purse) made by a north suburban volunteer group called Protect the Girls. Alas, no website nor FB group. It has an adjustable Velcro shoulder strap to sling over your shoulder, positioning the pillow between arm and armpit/ breast. It also has a kangaroo-type pocket containing a miniature pillow to put between the car shoulder belt and your chest. The group meets every Nov. to make them to hand out to various north suburban hospitals
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How wonderful about all these pillows! I wasn't so lucky. After a few miserable days at home from my SNB incision, I found a little pillow in my house and used that. Then I ordered a pillow online. Still use it when I sleep.
MJ
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ML1209 - How to put your oncotype in your signature:Top right go to "Profile"; select "Treatment" tab; select "settings" hyperlink located within note paragraph; Under the "signature" you can add anything you like. Some put favorite quotes. Also don't forget to toggle off of personal view on "signature"
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ML, I put it in my SIGNATURE line and then made it PUBLIC. Each and every single thing needs to be made public to have it show up. A rather convoluted system.
HUGS!
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Hi All, sending good wishes to all who are under extra stress waiting for test results, for insurance OK, for info and options to start next phases of treatment, etc.
Test results: Waiting is stressful. Some results - such as pathology reports - are typically not accessible via patient portals. However, I've been finding that at least the two hospitals where I've bee treated recently have been good about posting imaging (including imaging-guided biopsy) and blood test results. Typically, they wait until the ordering physician has viewed these results, but that could still offer a head start.
Pillows: I've been finding it very helpful to use a small, fleece lap blanket across my chest as a cushion from the car seatbelt. I was also able to order a nice, quilted seatbelt cover. Etsy had various types of cushions to help those with drains or chemo ports or those recovering from breast, chest, or abdominal surgery. I can check back to figure out key words that were productive if that would help anyone. I found that a number of cancer survivors or those who've supported friends or family with cancer have developed items to help with special situations we face.
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Thanks for all your advice about bras as I recover from bilateral reduction surgery. I've followed suggestions and am trying various types of bras. The goal will be to wear wireless, contoured cup bras 24/7 for the next months. I understand that my cup size will change with radiation on L breast and with continued healing, so I'll need to buy additional bras.
I have two questions. Some of you might have relevant experience from other types of surgery or treatment. I'm not finding many folks who've had reduction.
1. Advice about gauze: I need gauze over incisions. So far, gauze pads have been pulling, shedding, and falling out! Tape is causing rashes. I also tried wrapping two rolls of gauze: one regular gauze around my breast (but that didn't stay in place) and one (self-adhering stretch) around the fold under the breast, but that triggered more pain. Any ideas??
2. Advice about shooting pains: I've been feeling intermittent but intense shooting pains that leave me gasping. I suspect that these reflect nerves re-energizing after surgery. That's good news. I'm preparing for a presentation at a conference next week. I'm not able to predict when I'll feel these "zaps." I'm usually good at maintaining composure, but I'm a bit nervous about this. I notice that I instinctively massage my chest when I feel intense "zaps." Any strategies to suggest either for the pain or for keeping my cool?
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So glad to have found this site. Scheduled for a lumpectomy on Wednesday, June 7th. Then if all goes well will have the Savi inserted for the 5 day radiation in a few weeks. I'm an information junkie.....I need to know everything ahead of time! So finding this site is very comforting. I've been very strong - but these last few days I've had bouts of teariness....
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just a quick update from me. I'm down in South Alabama with my mother. As you know she's in hospice and fading every day.Although she is drinking some, she hasnt had solids since mid-April. She is so, so thin, not more than 90-lbs. She could barely raise her arms to get dressed this morning.
My sister came down with three tiny baby kittens that were abandoned by their mother at three weeks. Shes been bottle feeding them for 10 days. They have been such a dose of sunshine for my mother. She has thoroughly enjoyed playing with them, holding them, and watching them eat.
One good thing is that my sister, brother, and i have been able to heave-to in mother's house. Bro took two truckloads of stuff to the thrift store and we have so far tossed 15 big black garbage bags of pure trash. We have cleared 3 rooms, one waist high with crap, another packed to the ceiling. Mother would kill us if she knew we were rifling through her stuff, let alone tossing it. Fortunately/unfortunately, she is far too weak to make the one hour trip to see her house.
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BarbMak, Welcome! We're glad you found us. Your teariness is very common. Your life has been upended by the dreaded "C" word. As you get more comfortable with your diagnosis you'll find it isn't quite as scary as you imagined. Still no fun. Please help us help you by filling out your PROFILE, then going to the SETTINGS tab and making each and every item PUBLIC. That will make everything appear below each of your posts. And that helps us help you when we answer your questions. As an information junkie, you might want to read Dr Susan Love's Breast Book. Loaded with helpful information so you'll know what you don't know (and that's an awful state to be in).
HUGS!
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Poodles, it is so hard seeing your mother waste away. I'm glad the kittens have brought a bit of joy to her. Sounds like you are making great progress clearing out mother's house! Did you get all the legalities of it straightened out? How are YOU doing? Sending you loads of love and hugs during this awful time.
HUGS!
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Hi Folks,
Poodles, it's not easy to see your mother fade away. It's good that you and your siblings have a good care situation for her. Heartwarming that the kittens have brought comfort. Please hang in there.
Barbmak, welcome. I'm a newbie myself. I've found tremendous support and practical in this forum. Really appreciate that folks remain and offer advice and resources after they've progressed further on this journey. It's helpful to get this feedback from those who've successfully navigated these steps.
Sorry to bring up gauze again! On what seems to be my 100th trip to local pharmacies, I discovered that CVS Health produces "Post-Surgical Breast Pads for use after mastectomy or other breast surgery." If this does this trick, I'm going to add suggestions about gauze to the surgical "to do and to pack list" on this site.
Thanks again. Sending good wishes to all.
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blooming - that's exactly how I handle the seat belt. Even this long after my surgery, the belt bothers my breast. And now I'm a bit sore from rads.
MJ
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BarbMak, welcome! Tears are normal. This is a very emotional journey, especially in the beginning when you don't know your treatment plan. It's full of twists and turns. Try to stay busy and take it a step at a time. Will be thinking of you when you have your surgery. Sending positive thoughts.
Poodles, my heart goes out to you. Glad your family is there with you. Hugs!
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Just had to share this photo I came across online. To me it epitomizes the kindness and helpfulness found in these forums.
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Just had to share this photo I came across online. To me it epitomizes the kindness and helpfulness found in these forums.
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I agree wholeheartedly!
Hugs!
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Blooming - I was lucky enough that my radiologist staff provided me with a box of gauze pads, which is actually high absorbency sponge (latex free) that looks just like gauze to me. And a wide tape that was much easier on the skin I had a brachytherapy incision under my breast. The nurse noted that my personally purchased tape was way to harsh for my breast and gauze was not absorbent or cushy as the ones she provided. Both were much much better then my store bought selections. A friend wanted to get the same as she had surgery and discomfort with her incisions. The only place to purchase were at medical supply store, regular drug stores just didn't offer either the gauze or the tape.The tape is Medipore H by 3M and the gauze is actually high absorbency sponge, McKesson Medi-Pak Performance Plus.
With the zaps, its very possible they will decrease by the time your presentation comes around. This is a guess, but maybe a dose of Aleve just half an hour prior to your presentation "might" tone down the effect and thus keep you from showing your massage technique to those in the audience.
I totally understand the concern. In three short weeks I have made it a habit to just walk around holding my breast. It came from any movement while walking caused discomfort. I am large breasted and was unable to wear a good supportive bra, the best I had was my hand. I'm in a supportive bra now but that darn hand just keeps coming up to hold the girl??? I am going back to work in a few days and can only imagine my standing in front of my customers with my hand just wrapped around one breast. UGH!
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Barbmak- Welcome to the site. This particular forum is filled with some beautiful souls that will share anything. From tears to hugs to what worked for them or didn't work for them. I am three weeks out from my lumpectomy and had the mammosite (other type of brachytherapy device). With mine, they inserted a temporary device in location during my lumpectomy. Two days later the surgeon (in his office) swapped out to the permanent device. From there I went to radiologist, where they did a CT. The following Monday I started the 5 day/2 times a day treatment. I only took one pain pill the night of surgery and from that point on I did Tylenol and ice packs. You've got this. I found my mind was more of a problem with the unknowns then anything else. Tears are normal and they tend to pop up in the most unusual time, at least they did for me. And I have to admit after three weeks out it wasn't anywhere as bad as I imagined. Like I said, you've got this and we're here for support
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Hi Blooming,
I had a lumpectomy with a small reduction. I have only had very thin strips over the incisions, which fell off or I had to take off after 7 days max. Now and then they were bleeding a little, so I had wash my bras a lot. There was one nasty patch at the bottom of the aerola that did not heal properly. I fixed a piece of gauze with hypoallergenic tape over it, which I was quite a challenge as I did not want to stick anything on the incisions. It worked quite well, though. I had an old sports bra with a wide band that did not push against the incision in the mammary fold so much. During radiotherapy I tried to avoid skin contact, so I cut up an old very soft cotton t-thirt and stuck it into my bra - under the mammary fold, between the breasts and also on the side. They stayed mostly in place. My breast was quite swollen from the radiation, but it went down after a few weeks. The permanent changes in size and shape happen usually later, it takes up to one year. At my center they do not do reduction on the healthy side at the same time because of it, they wait for at least six months.
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SJI, Thanks so much for that photo. Heartwarming.It does capture the essence of this forum. Folks are sharing generously from their experiences.It happens on each page.In line with the theme of the many benefits of this forum, here's one ex:Gardennerd, I never thought I'd find anyone who shared my concern about how I might react to unexpected breast pain when I'm in public! It's so helpful to learn that I'm not alone!
Thanks for all the advice about the gauze and bras and gaining the ability to walk around in public and return to work in the office! Tappermom, it's helpful to learn that a lap blanket (and possibly a seatbelt cushion), help you, as well.This also helps me prepare for rads.
Gardennerd, It's wonderful that the nurse sent you home with special gauze and tape.Thanks for sharing the info and even the name and the scoop about medical supply stores. Saved tremendous time, money, and frustration, and this could help others.Would also be a good suggestion for the breastcancer.org "to prep and to pack" pre-surgery list.Thanks also for the reassurance. It's certainly possible that the zaps will increase and I'll try some meds shortly before the presentation.That should help prevent me from "showing (my) massage technique"!!The chuckle is also helping a lot!!!
Paris, thanks for the scoop on the gauze and hypoallergenic tape and on the old t-shirts for radiation. I didn't yet know how that works.Thanks for the info on how your center handles the reduction to try to achieve symmetry on the healthy side.My center typically approaches things that way, as well, and I can perceive the many advantages.Because of the size of my breast (G-H) and skin complications I already had, we tried this approach.If anyone is considering this, I can offer more details.
As always, I'm sending good thoughts for all who are going through stressful times.
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First follow up mamo today.....very scarred and nerve racking.
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Thinking good thoughts, mellang! We'll all be there, shaking in our boots, one day. Let us know how it goes.
MJ
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Barbmak, Welcome, but I am sorry you have to be here. Hang in there. Lots of tears flowed in the first couple of weeks. I don't think I have cried in several days now. It truly is the fear of the unknown, but there is SO much hope in this journey, and I am just a month and a day in.
I am feeling better than I could have expected at this point. You've got this!! We are with you.mellang, All will be well!! Hugs!
**Some of you have quotes before your diagnoses. I am not sure how to do that. Pointers? Thanks!
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Kim, to put a signature line on your profile, click on My Profile, then the Personal Info tab. Note the box on the top right and click on SETTINGS. Scroll down and you will find a signature box you can edit. Make sure to make it public. All very confusing. I wish all these settings were in one place and not so hard to find.
HUGS!
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I have a question for those of you who had lumpectomy/radiation a while ago now: at what point was your breast at it's "final" size?. I finished radiation May 26 and maybe still have some seroma left (hard to tell) so I suspect it still might get a little smaller.
The reason I ask is because I need to buy a bridesmaid dress for October and I am worrying about the bra situation. Honestly right now the thought of just trying dresses on sounds uncomfortable (still having zaps and radiation side effects). The bride is giving us a set color and having us pick our own style but there are surprisingly few options that work with a normal bra. I suspect a lot of the ones I've seen online with no straps, really low backs or one shoulder have a lot of structure in the bodice which i am worried will irritate my SNB area. But maybe by then it won't hurt so much anymore? I'd be happy to hear how anyone who has been done for at least 4 months has been feeling. Thanks!
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I finished radiation four months a ago. My doctors told me that within the first year changes to size/shape are possible. I still had edema/tissue inflation until about 3 weeks ago, since then the breast has shrunk a somewhat and is less lumpy around the tumour bed. The scars on the breast and the SNB incision do not hurt anymore.
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PontiacPeggy, Kimpossible818, Gardennerd- Thank you all! I am so blessed to have found this site...oops here are the tears again! Ok- I know I've got this... and now I've got some friends to help me through. Also I just ordered the Breast Book and will look for other tips on the site for after surgery.
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