Radiation recovery
Comments
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woo hoo- so good to hear from our Kate- We sure understand that you were not up to posting and hope your appt with surgeon went well and you can work on that leg swelling.
We are here for you and pulling for your recovery
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Gigil,Sab,Joan,Sew, BigDbeauty,Runfree, Lisa,New2bc,Brookside,Pat01,Cindy, Josie,Suzannah, Josie, and Gemini thanks so much for your support. It was overwhelming and made me feel so good.
It is a total reliief to have the catheter out. Unfortunately my feet and legs are extremely swollllen and causing havoc. I saw my surgeon today, and he said it will take 4 weeks to get them back to the size they were before the surgery. I am taking Lasix, wearing support stockings, and elevating. It's much worse than the times I had it before, because I can barely walk. I see Doc Friday, and am anxious to hear what he thinks will help. Your support has been more encouraging, and I so much appreciate it.. It helps to know I am not fighting this alone, and my sistas will help kick this ugly cancer in the butt!
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Just stopped in to see if Kate posted. YEAH!!!! So glad you are ok. Understand about posting and we will all settle down now that you are back. Happy dance...Happy dance!!!!
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Kate, 4 weeks, yikes! Did the surgeon explain what it was about the
surgery that triggered the leg swelling? I feel clueless like Joan.
Can't quite figure out the mechanism there, since I know so little about
how all that stuff works. Hope it turns out to resolve much faster than that.Sew, I have not been near Bob Costas
lately, but I've long thought I wouldn't mind getting near him! Sadly
I've been too busy to watch the Olympics except for the opening
ceremonies. My classes have me hopping. I'm also two Downtons behind!
Crazy times.I, too, LOVE LOVE LOVE the family baking stories. And I'm so excited for you about your daughter's art show, SAB. My daughter is an artist too and there's nothing quite like seeing all that work on the wall. (But mine is just in high school.)
I got freaked out the other day because my treatment arm felt heavy and tingly after grocery shopping, much more than the usual little bit of symptoms I get from that. After dinner I elevated it while I was reading for a couple of hours, which did help. But Monday it still felt weird. By the end of the day I was in a swivet, sad and scared. I called and actually reached a lymphedema therapist at the hospital where I had my surgery. She told me I'm not in imminent danger of LE and gave me some tips on strength training. Then I called my surgeon's office and initiated a referral for LE therapy, just preventive. I'm going to try to coordinate an appointment with my next trip to my surgeon in a few weeks. I had some decent PT back in May and June, but the better person I saw was in a different city and connected with my radiation doctor, whom I'm not seeing anymore. Brookside, I might try to go to this therapist's classes on Wednesdays sometimes, probably after the semester--the same classes you mentioned going to.
Yesterday I felt great and was very productive, but today I'm sad again after reading the NY Times article about how mammograms aren't that helpful (link below). Since it wasn't a mammogram that revealed my cancer, it's not that story but the individual "Faces of Breast Cancer" stories that brought me down. I've read about 25 of them. So far they seem VERY skewed toward people who are diagnosed very young, 20s and 30s, and toward higher-stage cancers. I guess that makes good copy but it's not representative. I feel compelled to read more of them, partly to see if there starts to be a more proportionate number of lower-stage cases. All the stories are incredibly powerful and important of course. It just all makes me kind of pensive and churned up.
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Run, Wow I just glanced at the article and I am perplexed. Why would we not want mammogram to be a slam dunk decision? Because of momentary discomfort? (Maybe we should not go to the dentist either because they might miss some decay and having your teeth cleaned is uncomfortable???) Why give women a reason to avoid mammograms? Why think about removing a tool in our diagnostic arsenal…because it is not perfect? Because we can treat more advanced cancer so we should just wait? It seems to me that we should make the tool better, or add tools, not take them away. And, just for the record, my small tumor was caught by mammogram, allowing a lumpectomy and no chemo.
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Run - I am perplexed too. In 2012 they said we could go without a mammogram for a year if you had several good ones. I almost did but decided to do 1 more year. They found my DCIS on a mammogram. Had I not gone it could have been much worst a year later...or not. For me I am glad I went. I had no lump, no indention, no pain and only 1 thing that was a question. Two years eariler I had a little discharge from that same breast. We checked it and nothing. That was all. They thought it was a infection in the duct. Well it turned into DCIS and I have no doubt the immune surpressed meds I am on played a role along with loosing both parents, a gallbladder and a fiance. Stress and meds. Need I say more. I too have a soreness I get in that breast. I asked my surgeon about it last week after he checked me. He said it was common and to do some stretch exercises. It will get better. I like him but he made his money on the surgery and is not responsible for anything but that. My PCP says go see your rads dr. The rads dr says do these exercises and see us next year. I still say message would have helped me after I went through it but nobody here agreed. Sometimes I reach up and touch the wall above me for a few seconds and I can feel that for days. Just tight I guess.
It is -3 this morning. I wake up every morning with a dry mouth, eyes, nose and I have a humidifier right by the bed. The heat never stops going and it has been that way since Thanksgiving. Spring is 5 weeks away although never here till April 15th. I will take the ants and dead flowers we will all have...just get rid of this winter. Worst I can remember since the 70s.
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Yikes, Run Free, that article is sure flawed. And the NY Times permitted it? My problem is, ok say the death rate from BC is the same between those who had mammos, and those who didn't (among their 90,000 women). Don't they realize that of the women who had mammos, found the cancer and had it treated, so then lived, would have skewed their DIDN'T have mammo's group and died to a much higher number? Also, yes, we know they're over treating DCIS and the medical profession is currently looking at that protocol. It is true that DCIS is not technically cancer yet, and they do treat it as though it were simply because they can't tell if/when it will change. Some DCIS does change to cancer, some doesn't but they have no reliable way to tell, as I understand it. I'm going to skip reading the life stories, I always cry.
Run Free and Bunkie On the strength training; my LE therapist eventually moved me on to strength/balance training which surprised me. It seemed to me the massage to get the breast drained was more important and although I could do it myself, she was much better at it. Apparently though if you do strength training it will help the LE system drain better, and once you've trained the systems how to drain this LE area without some of the nodes which used to be there, then the strength work reinforces that new pathway.....or something like that. She was insistent that I use only 1 or 2 pound weights for most of the work except 5 pounds when I would work strictly biceps. She also insisted that if I did any gym classes, I had to let the instructor know about my LE. That said, I haven't been great about keeping up the workouts, and recently decided I should do my upper body weights. I decided that the wimpy 2lb ones were silly, and I should use the 5lb. WRONG.....it does aggravate that lymph system and cause twinges and feels tight, and I'm a year ahead of both of you out of rads. So, that's the long way of saying I'm not surprised the Docs are saying do exercises. But I also feel that LE physical therapy is a must for any type of LE since it helps so much.
Kate, looks like you're not sleeping much if you're on here posting at 2 am? Hope the leg swelling is doing better
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A short hi - am at work.I agree with questioning the article and stats. Mine was found by mammo and who knows how it would have turned out otherwise?
About the life stories....I can't read them right now; but if these stories are linked to the "mammos don't matter so much" article, that is oxymoronic.
The fact that the life stories are about most difficult experiences with BC does not bother me. I will probably read some later. It seems to me that Pinktober fundraisers often focus on all the "cured" ladies and not so much on the ones who are struggling. I think the uninformed public needs to know that BC is still an unforgiving, deadly disease and that much much more research is needed.
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From my experience, I skipped my mammogram for one year and in that time period, my tumor grew large enough to show up and had just started breaking out of its capsule. Mine was DCIS and invasive. I would never advise anyone to skip their mammogram. I do think DCIS is being over treated, but at the very least, it needs to be removed. I have two sisters who both had pre-DCIS calcifications in their breasts. They had them removed and haven't had problems since. Studies like this are confusing at best, and at worst convince women to stop believing in the tools we do have to prevent breast cancer from progressing to the life-threatening stage.
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Kate, good to see your gorgeous face popping up again. Missed you!!
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I hope that 10 years from now, a lot more is understood about DCIS and the benefits of mammograms. My case could support either conclusion--I found my tumor myself, but I'd skipped my mammo that year so maybe that gave it time to grow to a palpable size undetected. What I meant about the life stories is that they are not representative of the population. I would not be surprised if some of them were stage 3 or 4, and very young, and BRCA-positive, but the numbers of all of those among the stories I read were really high and I have my suspicions that the NYT chose the stories that are more alarmist just to keep people reading. And because it sort of matches people's preconceptions about BC, especially the BRCA+ thing which now everyone thinks is really common thanks to Angelina Jolie. It's the teacher in me--I want the public to understand what's typical along with what's possible. In a way, the stories were actually in conflict with the main article. Several people in the stories said, "Thank goodness for my mammo!" and "get your mammo ladies!" Different person in charge, perhaps.
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KATE!!! You are back! So sorry you are having some difficulties with your legs swelling again. Huge hugs and hope the doctors underestimated you (again!) and you will have those babies down to normal in half the time cause you my dear are a tough cookie!
As for the Times piece, I am scratching my head on that one too. As for the study, they found my DCIS on a routine mammo too. Would they have rather I waited and found it when it had become invasive (if it was going to as not all do) so I could risk my life! Sheesh, one good weapon and they think it is useless. The American Cancer Society disagrees though!
We are expecting a big storm so getting a few things done so gonna run. Hugs to all! xoxo
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Bunkie, Runfree, Sew, Gigil and April thanks so much for the support. Unfortunately I am not doing well today either. My left leg is very swollen, but at least the skin is movable., My right leg is so swollen, and you can't move the skin. It feels like it weighs a ton, and it probably does. In the hospital I ate liquid dietsfor 8 days, maybe jello and a broth, and I gained 20 pounds, and that must be from the water retention.
Runfree, I have tumors in my lymph nodes, so I assume that is why this is happening.
Tonight I will rest and elevate my leg as much as possible, Tomorrow the nurse comes and I hope she has suggestions. Friday I see Doc,
Thank you again your support means everything to me
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with you in spirit Kate. I hate that you are suffering. I hope the nurse is a help and that your doctor has some answers. You are not alone. I know you have a loving family and good friends but we are a caring circle of friends who will ride this out with you. Sleep well tonight.
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OMG, RunFree. What a shock to have your arm just suddenly do that after a whole year! I'd have been a total wreck, walking around all day, every day, from now on, with my arm over my head, waving.
In those first months after surgery, with that annoying cording, I was afraid to do just about anything. My lymphedema therapist made such a difference in how I felt, maybe even emotionally more than physically, and the Lebed exercise showed me safe movement and started me building strength. I truly hope you can get to see her asap. A whole year out, by the way, I'm planning another visit with her in a couple of months. One of the radiologist's notes on my one-year mammo was edema. I'm not sure where it is, except that it certainly includes my nipple. This is pretty much unchanged since the beginning of rads, so I suppose I should see if there isn't a way to move that fluid out. Probably the first step is to have them send me my mammo, then see if I can recognize edema. Unlikely, huh?
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Suzannah thank you for such a nice post. My legs are still unbearably swollen, especially the rght one. I am taking Lasix, but that doiesn't seem to be doing much. I am trying to elevate as much as possible. My nurse is late, but on the way. She needs to help me put on compression hose. The nursing agency has physical therapy, and I am going to find out about that,. Lymph massages would be great. Seems like I've traded one set of aggravation for another. My bladder is fine. Even though my bladder is smaller I am not having issues of leakage, so I am very grateful about that. The awful cramps and stomach pains are all gone too along with the ugly bladder tumor. However, I have severe leg pain, and I can barely walk from my sofa to the bathroom. I don't have a clue of how I will be able to get to Doc's tomorrow. Sure a friend can take me, but the pain is excrutiating
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kate, wonderful news that the bladder surgery went well, no leakage is huge! If only your swollen legs would cooperate. Maybe the nurse will have some ideas about reducing the pain so u can get to your doctor.
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Kate - glad bladder is tumor and adhesion free...hope the nurse did magic on your legs and Dr will have a grand plan to slim them down. Sometimes tx gets frustrating, but know that you have a super team & great attitude, and your pocket party glam-team cheering you on:).
Sending calm sliming comfortable healing thoughts&prayers your way!
Happy Valentines Day!
Xoxo
Cindy
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Hey Kate, I hope your legs are better.That has to be miserable.
My dermatologist wants to send me to a special dermatologist that specializes in allergies.They gave me this Elidele cream to rub on my eyelid 2X daily.Well it improved tremendously until I missed a dose one morning this week.Then the itching started again.The fact that I had a brown sugar cinnamon pop tarts that morning may have something to do with it.
He wanted me to call in a week to let him know how I was well when I called the office the MA said he wanted to try the antibiotic next I said nope. So this is the next step.
My OBGYN wants me to go get a vaginal ultrasound on my ovaries .He wasn't worried but also wants a CA screening blood test that detects ovarian cancer.
He said my right ovary seemed kind of big but couldn't even feel the left one.
I go for the ultrasound next Thursday.They do these at my office but he doesn't believe any OBGYN has the expertise to read a Ultrasound since their not radiologists.
I'm kind of concerned but not really to freaked out yet.
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Josie - ugh...the eye, the rash, and then us waiting. Hope your office is kind and understanding. Glad your Dr wants to be the one to review results. Did you have a baseline us last spring? My team required us for baseline...tami was on table at the time fir HT.
We will be in your pocket! Enjoy Valentines Day ...hearts, flowers, much love:)))
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Kate, I'm so sorry that you are having pain. I hope the doc helps tomorrow, and that you have relief--or at least a plan-- before the weekend.
Josie, don't freak. You know better than most of us that these things usually turn out to be "nothing." I had an ultrasound for the same reason years ago and they found a small cyst. I hope that it's nothing more than that…or even nothing at all!
Ladies, I watched the news this morning and sure enough there was the newscaster saying "maybe mammograms aren't as helpful as we think." Grrrrrr, it makes me crazy that they would dumb down information that way, and just accept even the most flawed story to fill up time.
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Oh, dd the elder's show was brilliant! Had a great time.
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Cindy, SAB thanks for the nice comments and concerns.
Cindy I'm having the US at the hospital not my office. No they d isn't suggest an ultrasound when I started Tamoxofin since I had a partial Hysterectomy in 2011 and Tamoxofin usually is only a concern because of the chance of Uterine cancer.
SAB what a great pic with your daughter congrats that her show went well!!
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Josie, it sounds as if your doctor is just being cautious. Give us a heads up before you go for the ultra sound so we can circle the wagons in support. Last year i had some symptoms and had an ultra sound of my ovaries-I was so frightened as I waited I could barely walk. Turned out to be nothing, but I wish I'd taken a friend or my husband to wait with me. I'm available to ride along in your pocket.
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I am NOT reading this article- I don't like the Times anyway but it makes me wonder about how all this starts to synch up with when they were saying you don't need annual mammograms and then we have Obama-care and presto- NEW study about how they are not all that helpful anyway- thank you thought police in my view- that way people might be inclined to believe they don't need it and no one has to provide/pay for it.
All that aside- I had a very interesting talk about this yesterday with a friend of mine who is a general surgeon- he is very worried about mammography and over testing/treatment because we don't really know what we are preventing by treating. We talked a lot about it and he said he sees women with high grade cancers that he goes back and looks through years of their mammos and the pathology is just not easy to see. In his words "maybe if I closed one eye and turned my head to the side" then bang- they come in with a palpable mass etc. so I would not have biopsied based on what I saw on earlier mammos. He does not know I had breast cancer which made it kind of interesting but better. We talked about the dense breasts phenomenon and mammo and he did agree that ultrasound or even MR might be more beneficial but again its hard to make that determination. He worries we are doing double mastectomy on people with DCIS that may or may not ever develop into an invasive cancer just in case. I thought it very interesting that breast surgeons spend a fair amount of time worrying about what they do. His conclusion was you can't worry about it you just have to screen and then treat what you find.
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Janis, this one is for you my baking sister!
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OMG!!!! fabulous picture- I gained a pound just looking at it. Are there macaroons on there- it looked like it but was not sure yuuum and look at those giant strawberries- divine
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Kate,
I hope you can make it to your appointment and the leg swelling goes down. At least the bladder and the stomach pain is gone.
Bunkie,
I also had a clear discharge from my breast back in 2007. It was just a drop that would make my shirt wet. I did mammography but nothing showed up. I went every year for a mammogram until 2012 where calcifications were found and a biopsy was done. Maybe back in 2007 I had DCIS that turned into IDC.
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Have a love-filled day!
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Kate, it must be pretty challenging to have that difficulty walking. I wonder if there are any key areas that could be massaged. I hope you get some answers this week...you should be able to enjoy this time of feeling better after surgery. Hugs, positive thoughts, and prayers...
new2bc, your diagnosis process is probably similar to many. Was your initial dx the IDC? Was that picked up by mammo or by you? There is still so much to learn about BC. It seems that since there is effective treatment for early stage cancer, it may not be a priority for the medical realm to research and revise treatment based on evidence.
My tumor was so deep that none of the surgeons who examined me ever felt it and they knew exactly where it was.
wyo, I had the same thoughts that you posted - that this will be used politically to gradually change policy. As you mentioned, there may be excessive treatment of DCIS. The fear of all things BC certainly plays a role in decision making. And don't forget about liability...the doctors do have a dilemma.
Josie, sending positive thoughts your way for an uneventful test. There is always something to disturb the peace, it seems. Just wondering, why does your doc want you to take the anti-b ? Does the doc suspect something that would respond? It's difficult.
Run, how is your arm? I hope it is settling down so that you can worry less as you wait for your appointment.
SAB, DD looks so happy...what a wonderful event! Happy day for all.
Had an early nap, now can't sleep. Fridays I can go in late...supposed to get more snow before morning.
Stay warm and be safe...0
