August 2011 Surgery Group
Comments
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It continues to shock me everyday how little education providers are giving about such important issues. This website is a Godsend.
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Back in June, I stumbled on the LE information by chance. My BS had paperwork that said if SN was positive he would do a full ALND. After reading all about LE, I was freaked and told him no way. They say an ALND does nothing to increase survival rates, only help with dx. Who the heck would want to risk the permanent condition of LE for a more accurate dx??? If even 1 node is positive then the current standard of care is chemo. Fortunately the Oncotype can help determine what to do in that situation. Dixiebell rocked with her 5! I, however, sucked with my 22 :-(.
Also, there is much research now about how much weight is given to micromets in the lymph nodes, but that's a whole different topic :-). My BS and I agreed he would take a few nodes since my mass was so close to my axillary region. He took 6 including the SN. Like I said, SN negative, 2 nodes with micromets. I don't know whether to yell at him or thank him for taking a few extras :-).
When I read that some ladies only had 1 or 2 nodes removed I now wonder...
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Add me to the list. My mastectomy was Aug. 30, 2011. I had SNB, with one positive node. Will begin chemo in October.
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Hi JanaJ. My surgery was the day before yours and my drain tube is still in. Earlier this week it clogged and backed up and my whole system went into shock, with uncontrollable chills, fever of about 101, and tremendous pain in the entire surgical site, along with back spasms. I had no idea what was wrong, but saw the dr. next day and they explained the problem. Needless to say, I'm leery of the drain tube now and just wish I could get to the point where they take it out. Also found out that antibiotics are routinely prescribed post-surgery, but in my case they forgot. So it has taken this entire week to almost return to my level of health with the aid of the antibiotics that I'm now taking. All I had was a SNB, but my arm hurts all the time, it seems. I can raise it enough to brush my hair, but it is always an effort with a stretching type of pain. I try to use that arm for normal things like pushing open doors and pouring water from a full pitcher. Hopefully, using it will help in its recovery. With chemo lurking about three weeks from now, I feel somewhat depressed. I wonder if I should start that process when I don't yet feel "good". Why does chemo have to follow so quickly after surgery? Wouldn't chemo starting in a couple of months be just as effective? My tumor was about 2.6 cms., so it's pretty certain that with a mastectomy, the margins were clear.
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Hi Ladies,
I haven't posted for awhile but things were coming along just fine, had one drain removed even. Tuesday morning I woke up feeling extremely weak and almost collapsed. I was admitted into the hospital where I stayed until Friday. The left incision site was extremely painful, wbc's off the charts, rbc's low. Obviously an infection which they were giving me IV antiobics for. Thursday my fever broke, and wbc's 'normalized' so I was allowed to come home with oral antibiotics. Hopefully I am on the mend.
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Wow, TOXCHEEP, that is a scary story of what you went thru with your drain clogging up. I cannot imagine what that must have been like. You can do some very very easy and mild exercise with that arm, mostly it's just a little stretch and range of motion stuff. And yes, I found that strength is important to get back, so your pitcher thing is probably okay. I managed to pull a muscle in that arm when I picked up a bag of groceries that was supposed to be light, and it yanked it. Took days to get over it, so be careful. GG
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Hi all.
I am actually a September girl but was hoping someone a bit further along in the process would be able to answer something for me. Stupid question to anyone else who had 4 drains post surgery. Any possibility of removing one at a time or does each side (meaning both drains on the same side) have to come out together? Won't be sad to see a drain or two go...
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I hope everyone had a good weekend, and are continuing to heal and gain strength. Blondelawyer - I hope your incision is healing well with packing, and that it does not delay your radiation. IsThisForReal - I hope you are on the mend and your infection is history!
I have noticed more and more stiffness across my chest. I do stretching regularly, but am considering contacting a PT. How soon after surgery did everyone start regular PT sessions? Well, off to bed. I have a CPR class in the morning. Chest compressions should be interesting! :P0 -
odie16, my BS said that the drains did not have to come out at the same time. What determines the time for removal is the amount of fluid they collect over a 24 hour period. I did not have any pain with my drains. I milked or stripped and emptied them every morning and every night. I never let them hang freely, they were always supported whether it was after surgery cami, fanny pack or ribbon tied around my neck and looped through the tabs on the JPs for showering. Toward the end I wore a pair of shorts that were a little too big and tucked them in the waistband of the shorts. Even thought they are a nuisance, you don't want to get them taken out to early because it can cause problems. Good luck!
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Hi Girls,
I hope you are all healing well, emotionally and physically. I am in so much pain I can't stand it. I think 80 ccs must be a h3ll of a lot for a first fill, and I'm very sore. Now, to top it off, my fill port has migrated UNDER my implant, so every time I move, it scrapes my rib cage. Anyone else feel me? I also am noticing that Righty is a little more R than I'd like... I hope my PS is counting on some revison work, because I'm not digging the hamburger bun look!
I said to DH today, "what the h3ll just happened to me??? I went for a mammogram and the next thing I know I'm having my tits cut off and new ones shoved in their place! And I Fing had CANCER!" He looked at me like I was nuts and said, "yeah, I was there, remember?" But some days, thats how it feels... I was just doing my thing, minding my own business, and all of the sudden I have no breasts (but have some great balloons!) and doctors keep poking me. What is THAT?
Today was one of those days that you are reminded that indeed, you are a statitic. I finally got to meet my peer support person, through our local BC coalition group, who brought me what she called a bag of goodies. Well, Girlfriend brought over a HUGE tote bag STUFFED with care items like blankets, journals to write in, rice bags for heat relief, tea, lotion, and a $25 gift card for groceries! Then I took my DS to his day of activities at our local JCC, and I ran into another BC support I haven't seen in months who told me she has been thinking of me daily, but she injured her back, and let me know there is an exercise class for women who have had breast cancer that is held while my DS is playing indoor soccer. I'm going to be there anyway, so if he will let me get away (he's 6), I can join it. Then when I came home, I had a phone message from Cleaning for a Reason who scheduled me for a house cleaning this week. I'm so glad, because 1, it needs it, and 2, I had an email that said they couldn't find anyone.
But, while those things are really, really nice, it was just another reminder that I got bit again by the cancer bug. So while I am very appreciative and humbled by the generosity, I'm also a little sad.
Ok, portunderboob is killing me, so I'm Audi, as they say in the street:). Have a restful, healing night!0 -
Thanks for the response FLwarrior.... I am not having any issues with the drains and have been emptying, stripping & pinning them to the inside pockets of some cheap surgical scrub shirts I bought for this purpose. Works like a charm... That said, I have one drain on each side putting out less than 15 ccs per day so I am just hoping to go from 4 to 2... (celebrating mini-progresses).....Accept that the other two will need to stay at least another week .....
Hope all the ladies are healing well and sending gentle hugs to all.
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Hello, Lump/SNB sisters--three weeks post-lumpectomy I am much less swollen with great mobility. No real pain-just some tenderness right on the stitches and at the lump site. Some nipple sensitivity where I had the dye injected for the SNB--would like that to go away--expecting it will. It is hard for me to remember to take it easy on my affected arm since it feels so normal. I don't want LE, but I also like being able to do normal things. It's hard to know where to draw the line, exactly. Today I am getting my chemo plan since I finally found out I am really a HER2+. A let-down, for sure, but everyone says chemo/Herceptin are so doable. So I will do it! Time to think about wigs, I guess....
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hi NancyJill... I just bought 2 wigs yesterday from Paula Young. They have a decent selection and a friend told me that the quality is quite good. Hoping she is right. Can't believe I can't wait to start chemo...just like I could not wait for the BMX..must be crazy. Just wanna be me again. On the up side I weigh less than I have in a VERY LONG TIME!...only 10 lbs more than my 19 yr old gorgeous daughter. Just wait til I get my foobies..gonna bring sexy back!
Maggie
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In case your hospital didnt give you one, the American Cancer Society has a booklet with breast exercises after surgery. You can order it on their website...or the hospital should have copies as well. Very useful.
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Eema, you desribed so well the dilemma of being grateful for all the support while hating what it has done to our lives. It seems some days there is more support than I have time for; but it is comforting to know it is there. At least the endless phone calls have quieted down, glad to say.
Nancyjill; So glad you are recovering. I have trouble remembering not to lift - My SNB lump is way down but I have developed a sore spot and now some swollen bumps (nodes?) in the armpit. I am using massage and elevation but will have it checked if it persists or increases. Enjoy your time before chemo and good luck. I will not know until after Oct. 6th about chemo. Seems so long.
Rockym - The research is showing that the ALND is not indicated for many women. That was why I chose my busy surgeon over the one with the beautiful new women's center. My surgeon did not do a frozen pathology on my SNB and would not do the ALND for my dx . She said that if I had more than 2 or 3 positive nodes we would talk about the next steps post surgery. Researchers predict that about 85% of women will not find further node involvement if SNB is good. She used the odds; and so far, it worked out. This is what is good about BC research - it constantly improves the treatment. We can only hope that on the genetic level, as much progress will be made on a cure. No matter how good the treatment gets, women are going through hell to get well.
Dogeyed, thanks so much for the great advice and reminders about the massage for the axillary area. The bumps I developed do demand more attention and I am watching this.
As far as my other stresses, I will send you a PM.
Hugs to all as we move along our different paths. So glad we can share this and be honest.0 -
Joan811, Glad to hear you did the right thing by going with the smart, educated busy BS and not the pretty place :-). I recall telling my RO that I felt a little strange since I picked my own "team." My BS was an acquaintance that I knew was a good surgeon and I always liked his personality. Real straight forward and funny too. My RO was a kick butt lady who is considered one of the best in the country and helped pioneer 5-day RAD treatment (which I don't get now :-( with my stats) and the MO was picked from two choices and I went with the one who had the better nurses and the office was just closer. Also my chosen MO agreed to do TCx4 and not TACx6 so that was more to my liking.
RO said that "cancer centers" don't always work well for some people and that while picking your own team is tiresome and painstaking at times, in the end you've got your people on the same page as you. Glad to hear you didn't have node involvement. You get to skip chemo... yes? My cancer was so close to my underarm, lymph node involvement seemed almost a given. That is why it was so strange to have a clean SN, but positive axillary. Maybe I've got a weird body, but at least know I can kick this cancer's butt!!
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Rocky,
You go girl - kick away!
My Bs seems to be prepping me for chemo, but not sure why. I asked to see onc before surgery but was told that it would be after. It turns out that I will wait almost 6 weeks to see the onco. I signed a consent for the oncotype test so I hope it is done when I go on10/6. Is there a time window for starting chemo/rads?
Wow, Rocky, you had clear SNs and positive ANs? Hope that's not my case because I wouldn't know! Three weeks post surgery it feels like nodes are popping under my arm nowhere near my SNB. I think it's a drainage issue but am so clueless.
Well, I hear a wild animal in my chimney - hope it crawls out. Every day is an adventure.0 -
Joan811, Well, it's 3:00a and I'm kicking alright :-). Steroids before, during and after chemo must be keeping a little buzz on. I'd take an Ativan to relax, but I've got a Neulasta shot today and then a follow-up with my BS. I suppose I'd rather have the least amount of drugs in me for both.
FYI... I never saw an MO before surgery. I was told he wouldn't even know what to say without all the information. I kinda tried to stay away from any chemo talk and concentrate on getting better from surgery. Fortunately, I had a lumpectomy so I healed up fast. The only reason I would think the BS is talking chemo would be if the Oncotype came back intermediate or high. Also, perhaps you are yonger? Perhaps you have a young children? Perhaps you are pre-menopausal?
6 weeks to get in seems like a long time, but 10/6 is approaching fast. Can you make another appointment for a 2nd opinion before you even see this first guy? Maybe the next guy can get you in earlier and you can use the 1st as your 2nd? Oncotype should only take a week unless there are some weird insurance problems. You can call Genomic Health directly and they are great! When my insurance was moving slow (my results were in and weren't being released) I made all the calls and got the MO nurse to talk to Genomic Health people and the results were ready for both of my MO appointments. I had a 2nd opinion 1 week after my first guy.
With your stats (IDC, 1 cm, etc.) nothing is going to change anytime soon. RADS with either the 5-day blast or the old 6 week regime only comes when you aren't doing chemo or after chemo is finished. That is the usual way. I did read about one lady who got things going so fact she did surgery, 5-day rads and thought she was done only to find out her Oncotype ws high and then she had to go back for chemo. Man that would have pissed me off. Thinking I'm home free, ready for my hormone therapy and then bam. Moving too fact would have left me with "boob remorse" or "chemo remorse" and I never wanted to look back and say why the heck did I or didn't I...?
The clear SN was freaky. I've heard that some get the clear SN, only to find out it really was positive, but that is why I ended up on the newsgroup at Johns Hopkins taking with their NP and then ultimately using them for a 2nd on the pathology. I wanted all my bases covered since chemo is a big decision and I wasn't taking it lightly. Hope your animal made it's way out. Can't have any critters running free in the house :-).
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EEMA, I feel for you, that's for sure. I sometimes cannot believe I have this, either. Where in the world did it come from? I surely hope you will contact your cancer doc about this pain thing and it rubbing on you, that ain't right no way!!! After you said what you did about your boob being too far to the right, I looked at my remaining one, and I think it is actually SUPPOSED to be way over there! Smile. Let us know what the docs say about your pain. GG
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Rocky,
Good news - I got a call from Genomic and they are starting my oncotype test and insurance pays all.
It will be back for my appointment. Does this mean that my onco is on the fence about chemo? Or just being thorough?
I know rads (likely 6 weeks) are on the plan. I just started reading up and whoa - not a cake walk but do-able.
As far as chemo, I am 62 and may get by with the hormone suppressors. Nothing really new in the surgical pathology. (some results say grade II/III so not sure what that means. I thought tumor was grade 2)
For some reason, I continue to make minor plans and commitments even though I know treatment is coming. I guess I am sailing on the big river caled De Nile.
The chimney critter came back twice, then vacated. I was trying to sleep on sofa by fireplace. ha ha ha. Took the day off today.
Oh - I do have the number of an oncologist in New York for a phone consult. I almost forgot to call her. Put on list.0 -
It is strange; so much waiting, then 5 appointments (MO, MUGA heart test, chemo. ed. with nurse, wig and port) all in one week! Hurry up and wait....for myself, I'm deciding to reduce my commitments. Sigh.....
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Joan811, Terrific news from Genomic Health. My first MO didn't even mention the Oncotype test. He doesn't give it a lot of clout, but he is old school. The 2nd MO said the same thing. He felt that they did this study AFTER the fact with ladies and now they are getting deeper into whether nodes, post-menopausal, etc. means certain things. My RO (who is more researched based) felt the Oncotype was a strong predictor and so she brought up this test with me the first time we met. She also did the BRCA test with me and a full genetic work-up the moment I walked into her office. I didn't even know what a BRCA was, but when she said holding off on surgery was a good idea until he results from the BRCA came back, I felt good.
The results could have meant ovaries out or boobs gone so she was on top of things. Keeping her :-). 6 weeks of RADS will be annoying, but it's all what you make it. I'm looking at this cancer right now as a job and it's MY job to handle it well and logically. I try not to get too far ahead of myself in my research and try not to get overwhelmed.
I too was considered a Stage 1b and Grade 1, but the 2nd opinion was a Grade 2. I think I'm still Stage 1b by the new standards, but the Dr.'s like to call me a Stage 2. I won't argue with them because I feel I made all the right choices in my treatment and that's good enough.
Making plans is great. I'm keeping up my volunteer work, having lunch with friends and not really changing much in my life. Our weather has finally cooled off so I'm trying to get back to walking in the morning. It's not De Nile... :-) it's moving on with life. Your stats are great... you have little reason to fear except for the unknown of treatment. As long as your in good health to begin with, this sounds like it's just another phase in life. Feel good it's not 20 to 30 years ago :-). I know I do!
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4 weeks post op and chemo begins tomorrow...I have such a mixed bag of emotions right now. gotta get some sleep so taking a little helper tonight for sure. Just went thru the chemo prop list and have the bag ready to go....is it weird that I am a little excited?? Thought the port placement was worse pain than the BMX and this time I tossed my cookies--so odd. Bring on the Taxol!
Maggie
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Starting to feel the effects of the 1st chemo yesterday (TCx4). I took some Zantac last night for the heartburn and I did the Claritin today for the Nuelasta shot. I was also a little itchy so the Claritin may have helped that too. Been rinsing with the Biotene every so often, but luckily haven't had any nausea. I'm guessing the Dexamethasone is handling that.
Mags20487, nothing wrong with being a little excited. It's a new experience and also the beginning to what will be hopefully a cure. My nurses sat down with me yesterday and went over each drug, SEs, etc. The first thing they said is this treatment is for a cure. I liked that.
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Mags - thoughts and hugs for you as you start your treatment. It's gotta be emotional to get on the chemo train. Wishing you an easy time and the best possible outcome.
Nancyjill - things have really moved along for you. It is a lot to digest in a short time. It's a good idea to simplify your life for now - keep the commitments and things that mean the most to you as long as you can. Let go of the rest. I hope your MUGA test is good and you can be on your way...we all know the sooner we start, the sooner we finish.
Rockym - So you have had your first chemo? and you get 4 infusions? There is so much I do not know....thoughts and hugs to you as you negotiate the unknown path in a place where a roadmap wouldn't do much good anyway. You are one step closer to cancer free.
Did your BS take your axillary nodes because they were so close to your tumor? Or was it already in the plan?
I think I can sleep tonight - took the day off - rested mind and body - then got kicking and cleaned the house. I'm feeling it now.
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Joan811, First chemo went well. Just starting to feel a little loopy this evening, but all and all, nothing other than a tad of heartburn and Zantac covered it. I did the Claritin today before the Neulasta shot. Helped with some of the itching and I'm not feeling any bone pain so life is good in that regard. TCx4 was my final choice. Initially the MO wanted TACx6, but when he saw my apprehension and research, he was more willing to let me do "chemo light."
BS took 1 SN and then 5 other nodes because the cancer was just that close to my underarm. Good position for keeping my breast looking good, bad spot for axillary involvement. He even said there was a node sitting on the tumor and he could see that in the films I suppose. He originally had in mind a complete ALND if the SN was positive and I said No. New research says don't do it and I was sure I'd get LE if he did. We agreed he would take a few in the area and I've always said, don't know whether to thank him or yell at him (since chemo was my choice with the positive nodes - even being micromets).
Ativan may be calling my name tonight. Last night I woke at 3:00a, went on the internet until 4:00a and then back to sleep until 5:30a. Could have been the steroids or the excitement of the whole day.
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Hi Ladies,
Hope all you who are starting/continueing chemo are doing well. Wish I could do something to help you, how bout a virtual gentle hug?
My implants are moving faster than I am! PS never told me to get a bra after, and I think that was a mistake. Righty is completely under my under arm, Lefty is making another boob under my implant on the side. Weird. And the right one is on the fill port and I'm stilll having a lot of pain.
I sent my pics to the NP, and she told me they still look 'rockin'. She's full of crap. If that's rockin', then give me something less provacative, please.
Today I have appointments with the dermatologist (new moles, I had Stage 1 melanoma when I was 17) and the OT. I also have 24 hours of work to do in three days. Who said being off work was relaxing???
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EEMA, keep us posted on how the melanoma dermatologist thing goes. My cancer doc wanted me to go see a melanoma oncologist lady, and after an hour of waiting, I left. My bad back doesn't like waiting. I had a melanoma mole on my breast. Anyhow, since I didn't see that lady, a dermatologist may be on the horizon for me, I've been to one before. Just wondering if he will think anything is melanoma-looking or what he does for you.
One of you was getting ready to get into TAXOL chemo, I believe. Now, I took it after going through a rather tough combination, AC which is Adriamycin and Cytoxin (I think), so I can't be sure how you might manage. But the main thing is it's a lot easier than AC, if that says anything. I actually felt fairly well during Taxol time, I had 12 weekly treatments, but those last two or three were difficult, I guess the stuff builds up or something. Anyhow, I wound up taking pain medicine, it can cause some bone pain and also some swelling/numbness in extremities. Figured you'd want a little info. Oh, and I had already lost most of my hair with AC, but after Taxol, the little bit I had left fell out, but don't know if that would happen to you since you're just doing Taxol. Some wig shops advertise in the phone book as being for cancer people, and they should have some head scarves all made up, plus hats, or some cancer clinics will give stuff to you. Oh, and after your last Taxol, it sometimes takes a few weeks to catch back up to your regular self. You can join the September chemo group and they'll help you as you go along, if you haven't gone over to that forum already. GG
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Just got back from the OT. She has to call the NP PS because my implant position is "impeding my ability to function." While I was there I got a text from my DH--DS (6) had been in the nurses office with a "belly ache.". He has done this before when he is really tired. Last night he had a cub scout meeting and didn't get to bed till 9, and has to get up @ 6 to get to school on time. Well, after the nurse heard that, we decided not to reward his behavior, and made him go back to class. He told the nurse his belly hurt 1. Because we gave the cats away (they've been gone since Jan) 2. because Eema has cancer and needs more surgery (we explained HAD cancer, I'm cancer free since Aug!) 3. Because he was sleepy. I know he needs extra loving, but can't reward negative behavior.
I also went to the dermatology NP today. She froze a bunch of stuff off my back, and I'm schedule to have 2 suspicious Nevi excised some time in October, before my oof/hist. She doesn't think they are malignant, but doesn't like they are changing.
Ok, someone from cleaning for a reason is coming to clean my pit-- I gotta go clean first!0 -
Abatellik: I agree, small steps to improve health!
Rockym: good job with first chemo--that will be me next Tues.
Joan811: my MO said I was in a gray area and would Oncotype if needed, but when HER2 was + she said we didn't need it--I needed TC x 4 plus Hereceptin. It's good to have all the data.
Mags20487: went to a wig fitting and will pick between two. I agree with you-let's get on with this and get it done!
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