Lumpectomy Lounge....let's talk!
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KKay, your post makes me want to scream (a little).
My experience with my RO and staff was that they like to downplay the SE. Another doc I spoke to said that they thought the cancer doctors know they have to hurt you in order to make you better, however it is psychologically hard on them, so-o-o they gloss over the SE of what they do. When I developed rads SE they just said, oh, that's unfortunate. The good news is that your BC was on the right, so the dreaded heart damage isn't an issue, and you had a lumpectomy (rads after mastectomy isn't pretty). Know that the larger your boobs, the greater the dose of radiation you will receive, thus the more likely you are to have SE. The SE from rads aren't horrible, but they do exist.Now for the bigger story. All the pink ribbon hoopla makes the public think that BC, if found early, is not a big thing. Hah! In so many ways, both large and small, life changes permanently. Psychologically, nothing is the same. Every time something goes wrong, both you AND your doctors will have to worry "Is this mets?" Then there is the normal day-to-day greater awareness of mortality that we learn to manage. Then there are the physical issues... Breast cancer, even "caught early" is no minor thing. Unfortunately, outside the BC community, you will be lucky to find real understanding. People ask you how you are, and there is this pressure on us to be "good girls" and not complain, to make the people around us feel better by reassuring them that all is well. Even friends and family who care deeply about us, want US to reassure them, since that is our role as wives and mothers and daughters. I suggest you find specific support from others in the same situation, either here on the message boards or in your community. I have found the group here of my chemo cohort to be of immense comfort and support.
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Well put, Palameda.
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I have a lumpectomy scheduled for November 13th with sentinel node sampling, followed by radiation and hormone therapy (suggested, not sure how I feel about that) anyway, I must say, Peggy, you are an inspiration. It is so good to read about someone a bit farther down the path I'll be taking soon doing so well with all this! Thank you. Maybe I won't feel all pissy all the time forever!
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Labelle, It's so hard not to feel pissy. It's very scary. I found that once I'd had my lumpy and got the path results (within 2 days!), I started to breathe. When my Oncotype came back at 13, then I relaxed. Radiation was fine except for the fatigue. Arimidex is fine so far - 3 weeks in. I'm 69 so that may make a difference in what SEs I may or may not experience. 3 days after my first Fosamax I'm doing well with that, too.
Just remember that most of us travel this nasty road with few side effects, or mild ones. For me, I want to do everything possible to make sure I kill the breast cancer and make sure it doesn't come back. So lumpy, radiation and AIs. My choice is killing it. And I think most of us feel that way. If you're pre-menopausal, read the tamoxifen forums and see how others have fared, if you're concerned. If you're post-menopausal, the Arimidex forum is a good place to start since it is the most common and usually first AI given.
Of course, stay here and ask any questions both before and after your lumpy. And check out the Fall Rads 2014 forum. Every forum will have tons of ideas to prevent and help with side effects, questions, worries. We're glad to attend your pity parties and give you lots of hugs. We've all been there.
Many HUGS and keep us posted on how you're doing. We DO care!!
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Thanks Everyone! I am certainly feeling better today. Not going to worry about Radiation until there is something to worry about!
Palameda - your insight is spot on! I agree with you on all points. One of my children was born with a complete unilateral cleft lip and pallet - each operation the Dr.'s told me the worst outcomes possible and as each operation was complete and turned out perfect I was relieved. I believe they did this so the outcome (any outcome better than what was described) was great. I was expecting my cancer Dr.s to do the same…..
Thanks to everyone again. Headed out to enjoy the day :-)
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I had a lumpectomy just over two weeks ago and I now find myself freaking out over the fact I'm now packing the open wound from surgery with gauze! I developed seroma and the fluid drained two days ago on its own. I saw my surgeon on Friday and she removed the steri strips, cleaned the site and packed it with gauze. So, I was to shower today and after my shower I was to repack the site and continue to do so until my next appointment next Friday.
That sounded easy enough yesterday, but it could not fully see the site. Now I can .....I have to use a mirror to guide the packing. It is frightening to me to see the wound and I feel kind of anxious and weak in the knees! I ask myself what I'm afraid of. Infection, not doing it right, prolonging this healing thing.
One thing I know for sure: I would never have made it in the health care field! I'm hoping my experience is not unique...has anyone else been through this?
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An addition to my post above : the good news is that before my surgical site got complicated this past week, I was feeling the best I have felt in months! I had chemo from June 5 until Sept 18 and the side effects were unrelenting. The good news is, based on this past week: they DO go away and you Do feel like yourself again! I had started thinking it would never get better.
Labelle, I, too, am to follow this lumpectomy with radiation ( after I heal!) and then hormone therapy for 5 years. Additionally I'llalso finish up this year with continued Herceptin infusions every three weeks.
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Fionascotti, they are now recommending hormone therapy (well at least Tamoxifen) for 10 years. You should talk to your doc about that. It might depend on age, I am only 48. A friend of mine has a re-currence a year after she stopped Tamoxifen (she was on 5 year plan). I believe that there are articles on this site about that
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Fionnascotti and SJacobs, I just started Arimidex in October. I'm 69. My MO said that I'll probably be on AIs or Tamoxifen for 10 years since I'm at a higher risk for recurrence with my Oncotype of 13! I'm quite happy to do whatever it takes!
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Fionascottie: contact your surgeon's office bright and early tomorrow morning and tell them you need a nurse to pack your wound. I had a major infection and they ended up reopening my surgical site and leaving it open to heal on its own, I blanched at having to pack it and since the location was basically under my right arm, I too would have needed a mirror and a stronger stomach than I have to pack it. I got a home health nurse who came to my house to pack it every day. This is covered by insurance. Since depending on the size of the opening it's likely this will go on longer than through Friday, simply request that the office set this up. You'll be glad you did! Truly, the surgeon's office should have offered. Hope this helps.
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Ladies, how long did it take for the arm to get better after SNB? My arm is so sore! I can't use it for much but have good rom. There is some swelling under the incision but nothing huge. My doctor seemed to act like I could go back to work after next appointment on Wednesday, I'm a nurse manager in a skilled nursing rehab. But I couldn't even lift a patient chart, typing on the computer would be a challenge, and still feel the need to walk around holding my boob to keep it from hurting. Hard to believe a couple days is going to fix all this. The pain is worse now the when I came home but he had said he was putting some long acting local medication in both places. Thoughts and experiences? I'm sore! I haven't been doing anything other than taking tylenol and ibuprofen. Ice is ok right? My arm is still numb on the backside and I get sharp pains down my elbow if I move wrong. This is all normal right?
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Seems like mine bothered me for a couple of weeks. I didn't have any numbness. My shoulder area and back of my arm down to my elbow hurt. I would elevate my arm on pillows and it eased the discomfort. I did ice my elbow. No sharp pains.
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My underarm is still numb. My BS said it is possible it will always be numb. I never had much discomfort except when my bra or clothing rubbed on the SNB site. I was very lucky.
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ugh my underarm is still numb too -doesn't bother me though unless I touch it . Weird sensation
Nancy
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Nancy, mine rarely hurts - thank heavens. Numbness is just strange and I have to be careful when I shave.
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exactly Peggy. Right now though no shaving for me thanks to chemo blah lol
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ForHisGlory, The incision under my arm bothered me for quite a while. I walked around for a long time holding my breasts with my hands to keep them still, too. Ultimately, I used maxipads to protect my incisions so I could move around better. Every surgery is different, so take the time you need to heal. My PS advice was "if it hurts, don't do it." He also said to allow 1 week recovery for every 1 hour of surgery... until you start to feel "normal", as opposed to healed.
Be careful with the ice or heating pads. You most likely are numb (even if you aren't aware of it do to the soreness), so don't over do it.
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Gee, I didn't feel "normal" until a couple weeks ago. About 3 months post-lumpy. That's not saying I was uncomfortable (except that damn lymph node incision which was quite annoying at times). I just didn't realize when everything stopped bothering. It was very gradual for me.
ForHisGlory, you are still so close to your surgery. Don't rush things. If you are busty (not my problem
), most gals seems to like good sports bras for support. Then maybe you won't have to hold yourself still. I would think that at about 2 weeks you'll be functioning okay. I was on my laptop right away. But we are all so different and each surgery is different. Quite amazing.0 -
Hi All -
I am going to post this in the Falls Rads 2014, as well so can glean the most amount of information. I have finished my first week of radiation and am getting fairly fierce periods of itchiness. I don't scratch it directly, only lightly through whatever clothes I am wearing. I started putting my Jeans cream in the refrigerator so it is a bit colder. I also have some Aloe Gel from the refrigerator. It seems to help but only temporarily. There are also some painful sensations and an increase redness in the skin, like the sunburn that is described in the literature. I know that it seems early in my journey, but there is nothing else that would account for it. Any thoughts? Should I report this to my team? I do see my RO on Tuesday, I could mention it to the technician or my nurse, Carla.
MarieBernice6234
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Hmmm thanks guys! I see I have more to look forward to in this journey when radiation starts.
Tonight my hand is swollen so maybe that's why I'm having more pain? I had put my ring back on and almost didn't get it off!
I am not going to push things and will listen to my body. I was just curious how to plan but have been reading and realize I just need to take it one day at a time and not try to plan when I'll be back to work or how I will feel through treatment. It seems everyone has their own road to travel. Thanks so much for always answering my questions!
It's not exactly the SNB incision that hurts it's the lump under it and the area below. Feels like a tube of lipstick is under my arm lol
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ForHisGlory,
I had similar problems after surgery. I kept my arm night into my body, holding my boob and it hurt - (the arm and boob) for a couple of weeks. I was afraid that I was going to hurt something. THEN, my PT said I wasn't doing it any good by not moving my arm and keeping it tight into my body. I started moving it - stretching - shoulder exercises - RELAXING! and it started to feel better almost immediately. I never did more than I felt comfortable with - but there was some pain from stretching the forming scar tissue. I would do my exercises and stretch then in a couple hours it would be tight again…stretch…tight…stretch…etc… Now it stays OK and I only do couple times a day. :-)
I also have the tingling and numbness underarm and back of arm. The feeling has come back in my breast and has improved quote a bit in my arm. It feels like stinging when I or clothes touch it….but getting much better and hoping this too will go away.
Do take your time..I am not a patient person (I try), but feel that when I calmed down and stopped expecting everything to happen asap that I started to do better. Hang in there.
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I guess I am ne of the lucky ones--I had my SNB separate from the excisional biopsy (lumpectomy) and for both of them I had surgery on Thursday, took Friday off and was back to work on Monday. I didn't need to do any heavy lifting at my job--mostly standing (teaching a class), sitting at my desk or reading to students, and shelving books. I didn't have any numbness. I did use the heart-shaped pillow they gave me for the SNB for sleeping for at least a week. As so many others have said, we are all different.
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stretching helps SOOO much! I had chording...when I lifted my arm it actually looked like a long chord from armpit to elbow...PT massage helped it a lot and stretching exercises...I didn't go to PT until about 5 months after surgery...then when I stopped , and slacked off on daily stretching, it came back. Guess it's something that has to be done, or it gets tight. Hang in there girls!
Mariebernice...i ended rads august...always mention discomfort to the nurse or techs as they know what to suggest. I had accelerated burn after 10 treatments and had to take a break...definitely mention it to them! Rosie
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Just wondering....is the cording due to the lumpectomy, SNB or external radiation?
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I think the cording is mainly due to the SNB, but radiation can make it worse
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Cording's usually the result of SNB or ALND but rad. can exacerbate it. Get thee to a physical therapist - but be sure to get your referral first!
(I've not encountered it yet, as my surgery's been postponed but it is an issue one of the surgeons raised as a likely concern.)
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I haven't encountered it yet either...just wondering if it's something I should be taking preventative measures for. It was never discussed.
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Nash, if you've not encountered it yet I would bet that you probably won't. My impression (and I could be wrong) is that it usually shows up in the first few weeks after surgery. Since you're about 6 weeks out, you may not ever encounter it.
The good news is that it's not usually permanent or as difficult to control as lymph edema.
Still, you might ask your surgeon for a PT referral just in case and ask about what to watch for. In fact, a PT referral is probably a good idea anyway.
My surgeon told me I'd leave the hospital with the referral on record. It would be best to have the appt. scheduled prior to surgery since it can take a while to get an appt., but many insurers won't authorize prior to the surgery.
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my surgeon never really talked about chording...so I never paid attention to it...I think I realized it after hearing about it from either these boards or another friend survivor....probably 4 months after surgery...it can be very mild but feels tight...my rads doc actually gave me the referral to a pt and the nurse said chording is not really discussed much...my lymphedema pt specialist knew lots about it!
So just be aware that if you lift your arm and it's super tight and you see a ligament popping out...it could be chording and pt massage and exercise helps a lot! Mine probably got worse after radiation and I stopped stretching...so I think it can be resolved but stretching the arm is a good habit to get into! Good luck ladies! Rosie
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Thanks Rosie and Hopeful....I did a yoga class today and stretched that arm. I had been babying my arm....so it was good to know I needed to stretch it out. It was tight.
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