Lumpectomy Lounge....let's talk!
Comments
-
Scouser...I've not experienced any pain in the other breast. I do get stabbing pains in my lx breast occasionally and lower rib cage on same side.
0 -
I said I'd be quiet for awhile, but here I am again. I decided to check out the rads groups, and that may have been a calculated mistake. So the current one, winter 2014-2015, while I haven't read nearly the whole thing, has taken a very scary turn in recent days, with women having severe psychological reactions to rads, apparently often due to previous (sometimes childhood) abuse and trauma, and PTSD from same. It's very sad. I was just trying to prepare myself for the simulation, really, which I think is going to be more challenging than the treatments to follow. I need you ladies who have been through rads and had few problems to remind me that it's not so hard. Peggy? Anyone?
I've had MRIs and CTs on occasions in the past, so I know what that's like. I've had to lie still for variable periods of time, and sometimes on hard tables in uncomfortable positions. So I know that's going to happen during the simulation. I will take my NSAID before to help with that discomfort. I don't think I need an anti-anxiety medication, but after reading all those posts, I'm feeling anxious!
0 -
Kay, read the Fall 2014 Rad group postings. I never saw ANYTHING like you just posted. There's nothing scary about the rads. Here's what it looked like when I was getting mine. The big white thing moved in sort of semi-circle around me. It's 10 minutes of laying there. It sounds like some of the women had issues before they started radiation, which is too bad. MRIs are more of a pain (and lots noisier) than rads. Relax. Don't obsess. They are snap. Don't let a few people who have had a bad experience for whatever reason mess with your head. HUGS!!!!
0 -
Thank you, Peggy, I knew you would save this day for me. I will probably dip into the fall group, but I probably should just stay away for now. I feel really bad for those women who are suffering, but I can't believe I stumbled into their suffering right now, when I was just looking for reassurance. Thank you, thank you. I'm sure it'll be fine.
0 -
Just think positive! You'll find the Fall 2014 Rads group much tamer. And probably staying away is a good idea. While I do sympathize with the trauma the women are experiencing, it isn't what you need to hear about right now. Keep in mind that most of us have no trouble with radiation. It's just a few minutes out of our day and that's it. MORE HUGS!!!!
0 -
I've posted this on a few threads because I love it, so there may be some overlap for some of you. We actually can come out of this fight stronger and with a clearer eye for ourselves and the world
0 -
I am on the Winter Rads group. One of the women is having problems because she is a rape survivor and feels vulnerable while on the table being touched by others. She posted seeking support. She received it from some of the women on the group who shared that they are also abuse survivors. I thought it was lovely how they responded to reassure someone who was having a very difficult time.
I'm sorry this is scaring you, Kay. Some of the women have arm mobility issues. Do you Kay? If not, then the positioning shouldn't be a problem for you. I think you will do great! I know I get apprehensive because I don't know what exactly is going to happen.
The simulation is the longest visit. Mine was less than 45 minutes. They positioned me on the table and made a custom mold that would be used to position me during rads. There was a lot of marking with Sharpies and a few tattoos (just dots). CT scan. The second longest visit is the first treatment because it takes a little longer for you and the techs to get you in the exactly correct position. My table time was 15-20 minutes, but many others' time is less. Once a week, x-rays taken on the table. Honestly, it was uneventful. The techs were awesome and kind. My techs said they would tell me before they touched me. This was helpful because then I wouldn't "jump" and get out of position. They kept me covered with a towel except when they were positioning me.
I don't want to scare you, but I had pretty bad skin issues. It completely surprised me, but only two other people on that entire forum had issues like mine. Most do very, very well. And there are many women on that forum, so the odds are in your favor!
Let me know how it goes! I think you will do great!
0 -
Peggy, I'm sorry you had such issues with your skin but glad that you have spoken up.
I see SO many women saying 'I had no issues, you'll be FINE' when, I. Fact we are all different and our treatments can vary SO much.
I am looking at 6-7 weeks, including the boost, to numerous fields, including supra clavicular, axillary, tumor bed and whole breast. That is a far cry from someone having simply the breast treated. I get pretty irritated at the minimization of the differences in radiation treatment plans and the possible effects for each of us.
As for info on simulation, etc., there is a wealth of good info on various consumer medical sites that is both sufficiently detailed and neutral enough to give a reasonable idea of what to expect, without all the personal issues to freak one out.0 -
Hopeful, I had no skin issues at all (a slight tan). I believe you meant to refer to PoppyK. I'm not minimizing anyone's SEs. I can only speak to what *I* experienced. The rads were a breeze for me. And I hope everyone can have the same experience I did.
0 -
kayfry, Just thought I would chime in here. My experience was like Peggys'. But I did "lose it "once on the table, but the techs were very understanding and just stopped till I could get it together. Was not the first to break down or the last. I Work part time and was able to drive 11/2 hrs to work. Was tired but able to keep up. I used aquafor everyday on my girl, starting from day one. I didn't wait for skin issues to start. I'm small breasted so went braless at home. Borrowed dh old t shirts. Had only slight tan color at end of treatment. Almost 2 years out,not much different in size or shape since I finished rads. Like Hopeful said,just remember everyone has their own experience, I can only tell you my story. I had to take 3 weeks off from work to recover from lx, others were back to work in a couple of days. YOU CAN DO THIS.
Jan
0 -
Excellent article, Lisaj. Thank you!
0 -
PoppyK, thank you. Yes, I thought it was lovely how compassionate the replies were to the woman who was/is having such difficulty with rads. And no, I don't have arm mobility issues, so I'm very lucky in that regard. I may well have a little trouble lying on my back on the hard table for the length of time the simulation takes, but I've done it before and can do it again (hoping they can give me some kind of pillow or support under my knees, which helps a lot!)
What took me by surprise, I guess, was how many other posters related how psychologically difficult the whole rads process was for them, as well, and how they felt so really vulnerable and violated (many others apparently having history of abuse, which is heartbreaking), and so much discussion of the need to visualize a happy place, every day during rads, etc. Whereas, I'm just thinking it's going to be a quick, fairly non-dramatic part of my day for a month. The tone of the discussion over there got me thinking of issues that hadn't even occurred to me before, including the issue of having to expose my scarred and dented, very small boob to various strangers of either gender, etc.—which I'm sure may happen, but which I'd not given much thought or worry to before. Power of suggestion is not always good! It was just sad, and of course, many of the women currently in rads on the fall-winter forum just went through chemo before rads (including you, I see), which I am also extremely lucky not to need, and it's no wonder they're feeling pretty beaten down. It put me in a place I really don't want to be right now, which is no one's fault but my own. I'm so sorry you had the bad skin issues; as someone over there said, I think, even if the odds are in your favor, if you're the one who gets x, y, or z, the odds for you are 100%! My RO nurse, who is the compassionate voice of my RO team, has assured me that she thinks I'll have little trouble, based on various factors like the small breast, which actually works in your favor, my particular skin type and how much it tends to burn (only a moderate tendency, not bad), etc.
I'm going to try to control all the worry about things I really can't know in advance, and it helps so much to have reassurance from the many strong women here.
0 -
You're right, Hopeful, and I've taken advantage of those medical site resources, which are very good. I have a fairly good idea of what to expect, so I won't be shocked when it happens. That's what I was looking for.
0 -
Smilemaker, thank you. I had my own brief "lose it" moment early in this journey, on the day of my pre-op appointment with my BS and RO. It wasn't until the lovely, sweet RO nurse practitioner was going over everything in detail with me about what to expect with rads that I suddenly found myself breaking down, which shocked the heck out of me. It just seemed so surreal that I was in this situation—which I'm sure is a feeling a whole lot of us have felt at some point. RO nurse hugged me and handed me tissues and was just awesome; I dried my eyes and told her, "It's not that I don't like you, I do. I just really don't want to be here." She totally got it, of course. So far, I've been okay since then.
Thanks for the tips. I have my aquaphor at the ready! Some others have suggested aloe gel, has anyone used that? I will be driving to and from treatment, about 40-45 minutes each way, and trying to figure out how to fit that into a life, which I hope to maintain throughout as much as I can. Just trying to figure out how to schedule so I can take the 2 hours or so per day treatment plus driving will take, get my work done, and exercise, and ride my horse a bit and spend time with dogs and husband and etc. I really want this BC treatment to just be something I have to do, not my whole life. It's surprising how it wants to take over. I'm concerned about fatigue, but I'm going to try not to expect it to the extent that I create it, you know? If you could keep up, I plan to keep up, too.
0 -
kayfry, Take it one day at a time. See how you feel and pace yourself. I have a sit down job,but work with my hands. Also it is part time 3 days a week. Let go of things that are not at top of list. For me it was house work.I understand spending time with husband,pets and riding your horse are important to you,so put on top of list. Dd rides horse as well, love smell of the barn. Call me crazy. You dont have to keep up with anyone,do what works best for YOU. I never thought there would be light at the end of the tunnel. I take that little white pill in the morning and except for dr appts and some minor se, bc is not the focus of my life. Hope it doesn't come back,but will deal if it does. It did take about 11/2 years to reach this place. Everyone has there own time frame. No right or wrong way to deal with or react to having bc.
0 -
Smilemaker, So glad you reached that wonderful place where BC is not the focus of your life. Even after my dx, it wasn't. I was so enmeshed in my DH's care that I didn't have time to worry about BC. I was struggling to get through each day as a caregiver. BC seemed like a side issue. Even after I finally had to put him in a nursing home in November, BC never came to the forefront of my life. By then I was done with my Lx and rads and just taking that little white pill and Fosamax. I find I'm living one day at a time. For four years I wasn't able to do anything because I couldn't leave DH alone and it got harder and harder to take him anywhere. I'm now living and refuse to worry about BC. And you're so right that everyone copes with BC in their own way. If I'd had to have chemo I'm quite sure I'd feel differently. I'm lucky at how easy my treatments have been. Very blessed. HUGS!
0 -
Smilemaker, no problem for me to let go of housework! Ha. I just can't let my work go, really, and I refuse to let my horse go, or the other really important things in my life. (I love that barn smell, too, by the way. Not crazy in my opinion!) I hope to continue with my riding lessons on Tuesdays and Thursdays because they make me happy and help to keep me fit, mentally and physically. If I also make it to the barn on rads-free Saturdays & Sundays, that will be okay. The fatigue could be a problem, I hope at least not until near the end of rads treatment, so I'm trying to work as hard as I can now to be in a good place before that starts. Right now there are too many medical appointments on my calendar for my taste (not all of them related to BC, some just routine stuff), but what can you do? It will get better. I'm lucky that I really did bounce back from Lx very fast, have few complaints, and I hope I can say the same of rads when it's done. One step at a time.
0 -
Kay--Relax! Even though some have posted about problems with rads, many more have said that rads were no big deal. Most of my personal acquaintances who had rads had no problem, and the few who did either had pre-existing or chronic medical issues/problems or went into rads after chemo and were already worn down physically (not your case.)
In the space between surgery and the start of rads, I dealt with rads as an intellectual idea and worried, like most of us here on bco, about being "zapped" daily for seven weeks. But before I went for the planning session, I resurrected an old idea I remembered hearing on the radio in my childhood, Norman Vincent Peale's Power of Positive Thinking, and put it into practice. I kept telling myself that I would get through those weeks with no difficulty, physically or mentally. That positive thinking worked like a charm for me--no skin side effects, no mental anguish, no discomfort, and no fatigue. Having carefully vetted and chosen my rad onc, I just put my trust in her and her experienced team and in my own resilience.
Those weeks of rads will pass quickly, the drive will become a routine but short-term commute, and the "breast cancer treatment package" will become a thing of the past. Two years after surgery, I don't think about my b.c. past as it relates to me, although I do share my story (a classic "routine screening mammography works" scenario) with others as a teaching point, and I also "pay it forward" by supporting friends who are now going down the b.c. road, however I can. But, thinking positively, I live in the present, not the past or future. I don't obsess about scheduled check-ups, tests, etc., nor do I see myself as a "victim" or a "warrior"; I am someone who had a medical problem that was successfully excised and treated, and someone who needs to remain vigilant about relapse/recurrence. And if I have a recurrence or a new primary down the line, I will deal with it when it happens, but I will not let the fear of something that might happen consume my life now.
About your aloe question: My rad onc did not recommend aloe, because so much of it contains alcohol, a desiccant, when what your breast needs is a moisturizer like Aquaphor. She did, however, recommend dusting with pure cornstarch--either from the kitchen or in the baby powder PURE cornstarch stuff with NO ADDITIVES--if needed, to reduce skin-on-skin irritation. And she favored using a moisturizer (Aveeno oatmeal was fine) on the breast and chest between my first visit with her and the start of rads (except on the simulation morning).
So, Kay, relax, take a long ride on that horse, write a chapter or two, and have fun. The end is in sight! Trudi0 -
Hi All, I start rads on the 16th. I got a breast infection which delayed it, but it's all better now, thanks to levaquin. I just wanted to say that the simulation was not bad at all. it only took about ten minutes. I didn't like having big Xs drawn on my breasts- it's like one more insult added to the mix! But the tattoos were no big deal. And laying on the table was not bad. It hurt a little since my arm is still sore. But not bad. I was super nervous but didn't need to be. I was getting pretty annoyed at all the questions about contraception and pregnancy- it feels like there's no privacy anymore! But other than that, it all went well. Best wishes to all of you!
0 -
OceanGirl, being post-menopausal, I didn't get the pregnancy/contraception questions but I know it could make a huge difference in your treatment if you were pregnant. And I think that privacy in a medical situation is non-existent. The personnel see lots of naked "girls" and I never felt uncomfortable with any of them (and most were men for my rads). Glad you got your infection cleared up. HUGS!!!
0 -
Hello to all,
Does anyone know how soon after lumpectomy does one get a mammography? Isi it 6 months after surgery or 6 months after end of rads? Surgery was on the right on 9/29/14. Rads ended 1/5/15. But also had abnormal Birad 3 mammog on the left on 9/11/14, and a 6 month echeck is due on the left mid March.
Thank for any info.0 -
Beachlady, for me it is 6 months after RADS, per my BS. So April will be my first mammogram post-lumpectomy.
0 -
Hi Peggy! Sorry for getting you called out! ;-)
Yep, 6 months after rads for the mammo. Beachlady, don't miss the March appointment for the left girl! I hope you get good results.
0 -
Peggy, I just noticed the generous knee supports under patient in this photo. I hope I get those!
0 -
Kay, You should get knee supports.... if not bring your own... maybe a pillow.
I hate the contraception/pregnancy questions, too. I understand the need for them, but still. When my MO discussed using condoms, I asked her if that was to prevent pregnancy, to protect my DH, or to protect my delicate tissues. She replied "yes". Okay then. I think I embarrassed my DH, but I was incapable of being embarrassed by that point.
0 -
I know, Trudi! I do just need to relax. I'm working on it
I really am going to try the power of positive thinking, I swear it. I agree with everything you say, including about victimhood and warrior hood (have you read Barbara Ehrenreich's excellent piece on this after her own bout with BC?) And I do see that thinking positively has great power very often (while at the same time recognizing that sometimes we women just have crappy luck, and it's not that we didn't think positively enough!)Thanks for the additional skin tips. I'm taking note . . . and today I revised a chapter, yesterday rode my horse. That's my plan going forward. Thanks so much, I'm getting a lot of strength here.
0 -
You're saying I should expect condom/pregnancy questions, despite being 64 and very much post-menopausal? That's kind of silly, isn't it?
0 -
PoppyK, no problem! I'm tough
I agree that by now we all should be beyond being embarrassed. It's more important to get things done right and safely than to worry about whatever sensitivities we might have managed to hold on to! I did miss the "condom" talk. Would have been interesting to see DH's reaction. He's never been comfortable discussing or even hearing about "women's" issues.Kay, you should have the knee supports. They are a huge help. I found it difficult to have my head/neck unsupported so they had a folded up towel they kept just for me to tuck under my neck. The techs WANT you to be comfortable and will do everything they can to achieve that. Just ask.
0 -
oceangirl, that sounds like a really streamlined simulation. Nice! I've been told to expect it to take about an hour, so not quite so streamlined. But otherwise I hope it will be entirely manageable, and have been greatly reassured by everyone's experiences here. I'm glad yours was easy.
0 -
Kay, I didn't get the pregnancy questions. In fact, when my RO told me to come back in 9 months, I told him I was NOT having a baby. That caused hysterics
It never occurred to me to worry about having radiation. It was just the next step in KILLING CANCER and that is all I care about. Whatever it takes, I'll do it. I wasn't going to not have radiation so I didn't think about it. I just wanted to get started and get it done so I could get on with things. That worked for me. Especially since I had so much going on with DH and didn't have time to think about anything or anyone but him. Whatever works for you, do it!!!! HUGS!!0
