Lumpectomy Lounge....let's talk!
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DaraB said: "When I mentioned it to a good friend who went with me, she said "Really??? Still? I thought you'd be fine by now."
What most people don't understand, unless they have had BC, is that we will never be fine again. "Being fine" implies that our worries are behind us, or should be, and we will go back to normal. My sister, who "only" had DCIS,LX, and rads, is NOT FINE--she has already had two scary lumps biopsied in the same cancer breast, fortunately both benign. But it was very frightening and brought back all the old panic. Although I am months past chemo and BMX, I am definitely NOT FINE. My goddamn breasts are gone! My hair was an early casualty of chemo and it's only now about 1-1/2" long. My blood counts are still wonky enough to cause me extreme fatigue which definitely impacts my quality of life. Oh, and I still have those gene mutations lurking around, just waiting to pounce again. I will never be fine.
That's not to say that I don't have hope. I try to live my life with as much positivity as I can. I enjoy my husband and kids, and try to spend as much time with them as I can. I love my job, working with people who have developmental disabilities and battered foster care babies. I love to sing in my church choirs, even when the music is written in Latin or Greek or German and I have to write it all out phonetically because it's HARD.
I think about cancer every day, but cancer does not own me. The difference is, I don't WORRY about cancer. If it reappears, I'll deal with it then. But don't tell me that I'm fine because you are uncomfortable that YOU'RE not fine with the specter of breast cancer. After all, if it could happen to me, it could happen to you, which is a very scary proposition. If you're scared of the possibility of BC, let's talk about it. But don't tell me to be FINE. I'm not fine.
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Molly, thanks for that article! I wonder if women newly-diagnosed with low-grade DCIS might want to have their MOs contact UM Ann Arbor--or contact it themselves--to have their biopsy samples sent there for BRIM testing before deciding whether to have lx, bmx or just active surveillance. I’d be interested to know whether grade correlated with BRIM scores. My friend down in the s. exurbs made the right decision for herself, based on her DCIS being multifocal, hormone-negative and high-grade (and because radiation to her L breast could prove cardiotoxic). I know in all likelihood she probably won’t have to worry about recurrence....but I know that because AI or tamox would be useless due to her cancer’s lack of hormone receptors, she won’t ever be truly “out of the woods.” (I have a couple of friends who had DCIS 15 yrs. ago and opted for both BMX and chemo--because their DCIS was hormone-negative).
Dara, good call on Robach undoubtedly having cold-capped. I wondered about that when she mentioned her partial hair loss. But I also wonder whether, being a newbie to breast cancer, she’d just assumed that cold-capping was a routine part of chemo protocol, especially if it’s always offered at wherever she was treated (or was offered to her because she obviously could afford it).
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Valstim52, how awful that the young woman thought she might be lucky like Amy Robach. I read about Ms. Robach's "good fortune" in October when she was promoting her book and I had just lost my hair a month before, so it stuck with me. I have not read her book, and maybe it mentions cold capping, though her PR only details that she had to cut her hair because it was thinning. That's a big detail to omit from the story.
Octo, I'm with you on the battle references!
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I've been away for a while and it took me a little bit to catch up on all these threads.
First - great news Peggy on your (almost) successful move. Hope the moving van shows soon with no damage!
Sandy - good news on your mammograms - have to say I'm dreading my first one end of September
LTF - you are probably over your burns by now, but if not, I had two really bad burns and one less so. It seemed like they were not healing until all of a sudden, literally over night, they did. Hope for the best for you.
I share the rage over celebrity "battles" with cancer. They do not tell the full story and some should be held accountable for misinformation. Well said, Sandy.
My hair has grown out enough that I go without the wigs or hats when indoors. It's not Judi Dench length yet, but maybe in a few weeks. I am on the downward slope of treatment now - only looking to take Anastrazole for the next 10 years - and hoping that I won't be on the wrong side of the the recurrence percentages.
When we get on the BC train, we do not know the final destination. Sometimes the train is going very fast, and all we can do is hold on and hope we don't fall off. We progress to different cars during our treatments, and we hope that our journey is linear, but we know the sisters who have had to make the loop to the cars in the back again. We may eventually move into more comfortable compartments, but we are on this train for the rest of our lives. The general population does not know this. I did not know this before I got on the train. It's not a "battle," it's a journey.
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Hi everyone,
First, I almost never post on the boards because I'm very shy, but do come here often to read your posts to feel less alone and to gather strength from others who understand how it feels to be diagnosed with breast cancer, the many treatment decisions we must make, the treatments we go through, and the uncertainties we face. You've all been an invaluable source of information and comfort for which I thank you.
I just had to add my thoughts to the discussion. Not only is breast cancer a heterogeneous disease, as we all know, but also our individual health problems or histories can make dealing with it even more complex as ChiSandy's story about her friend's recent struggles with DCIS illustrated so well.
When people make their individual treatment decisions, we don't always know all the details they're dealing with, so I try not to judge their choices or how they deal with them. Fact - Not all chemo regimens cause hair loss. A woman can go through chemo without losing her hair while having lots of other nasty side effects and residual permanent damage, such as neuropathy that others never see or know about if she chooses, for whatever reason, not to share.
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Keepsake, that's a really good reminder. I'm sure even celebrities don't always share everything with the public, and one never know what didn't make it to print or what was edited. I guess we all just need to be aware of individual choice, but never to promote the idea that there's just one way to look at a dx, or make assumptions.
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Before BC, I didn't realize that you are never out of the woods with it. That it stays with you always. So I was probably one of those who thought an Lx was one and done and you were good to go. Obviously I know better now. But I shudder to think how wrong I was with acquaintances who had BC in what I said to them. I hope I can keep the compassion to realize they just don't know and most likely don't want to know the real specter of a BC dx and they don't mean to be thoughtless - I sure didn't.
HUGS!
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Thanks, Dara. Sometimes, the particular treatment prescribed for one is not what one would choose. To best accommodate a patient's pre-existing health issues/medical history, an MD sometimes has to prescribe a personalized, or individualized, treatment regimen rather than the standard one. Not having the standard treatment regimen/protocol can cause a patient a great amount of anxiety because everyone wants to reduce their risk of recurrence to the greatest extent possible. But the MDs know standard protocol isn't always the best for every patient. We really can't always know all the particulars someone else is dealing with and why their course is different. The women with DCIS or very small,early stage invasive cancer who have BMXs for a myriad of good reasons unknown to us, the woman with invasive cancer that's the same molecular subtype, size, grade, and stage as many we know, yet is on an usual chemo regimen (that may not cause hair loss btw) because the standard regimen is contraindicated due to her medical history, the women who "seem" not to be strong dealing with their diagnosis at some point in time compared to so many others, etc...We don't know enough to judge them. We're all hurting and dealing with our disease the best we can. Just my opinion.
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great news Sloane!
At this moment I would've done just about anything to avoid radiation, I am in a lot of pain and have had a very bad skin reaction. Broken skin under my breast, my under arm, and my collarbone. Nothing seems to soothe it for very long.
But ultimately, I was relieved that my cancer was not widespread enough to warrant an mx, and that I was negative for any mutations that would indicate it. If I had done so I would've needed radiation anyway, because of that stinking lymph node
I've given it a lot of thought, and if I had a local recurrence, I think I would want to have an mx. But for now, with the information I have and knowing that the risk of recurrence is the same, I am very glad that I had a less intridivesurgery. Ive got enough to deal with already!
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^^ That's why I come here. No one else understands. Whether I'm taking my daily AI, nervous about a check up, or I hear a story about cancer, I think about it every single day. I don't talk about it because I know it would be exhausting for my husband and friends, but I'm living it every day. You ladies understand.
On a happier note, I'm getting excited about meeting Sandy in Chicago! She mentioned 10 fun things we could do on our 1 day, and I said, "Yes!"
Seriously, Sandy, you pick! If we BBQ, I'll bring some fab wine. If we go out, we'll be sure to get some fab wine! If it's a Chicago foodie place, a comedy club, an open mic, whatever, we're all in (except I won't sing unless it's in the car). Let's try to so do something, in addition to dinner and drinks, so we have a shared experience. Who knows, we might hit it off so much that we fly to Iceland some day to see the Northern Lights! (It's on my to-do list since I didn't see them in Norway!)
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Hang in there LTF! It'll be behind you in just a few days! I was just looking at my scar the other day and I hardly notice anything. I feel NORMAL again!
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thank you!
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Sorry you're in a lot of pain, LTF. Hope you'll feel better very soon.
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Molly, thanks for the article!
Sandy, LOVE your reply on the article!
Moondust, love your picture!
Sloan, yay on the test results! Yes, we will think of our cancer EVERY day, but still try to live our lives to the fullest!
Data, prayers for good test results. I took up something new also, adult coloring lol!
Peggy, yay on the furniture! My cat box is in laundry room and works out fine!
Molly, prayers for smooth healing and no complications with surgery!
Peachy, agree with you on article
Tbalding, yay o almost being done with rads!!!
Grazy, hope your doing well sweet lady!
Poodles, no well never be the same again!
I had horrible MRI experience, only because they did shoulder AND both breasts, took almost 3 hours. I got nauseated from the platform thing digging in my ribs, head phones fell off and had to put up with the loud noises the whole time, nose started running and was trying not to sneeze and vomit at the same time - then stomach started rumbling and thought I was going to have diarrhea on myself all at the same time, but I would do it again in a heart beat. Technician praised me for doing so well and never knew how close she came to having to clean up my snot, diarrhea and vomit lol!!!!!
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I hope your skin settles down soon, Jill. How many more treatments?
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LG, what a mess that would have been from your MRI. THREE hours? Yikes. I could barely move after laying on my belly for an hour. The first time I was miserable. The 2nd time I took a couple of Tylenol and that helped a lot. I didn't have any untoward events like losing earphones, thank heavens. But definitely would do it again. Anything to catch BC early or reassure me that nothing is there.
Sloan, I rarely think about my BC anymore. Part of the reason is that I never had time to think about it when I was going through surgery and rads, too busy taking care of DH. By the time I actually could think about having BC, I was many months into taking AIs, other treatments done, and it was all rather unreal. I would guess I'm unusual in that. Of course, I do worry when mammogram time rolls around.
HUGS!
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I finished my treatments on Tuesday, so I am now four days PFR. Hopefully it will stop getting worse and start healing sion!
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Jill - wishing you a pain free evening and ever improving skin. You've kinda been put through the wringer. Soothing hugs
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keepsake, welcome to the conversation. I agree that we never know what each individual is going through. Breast cancer is definitely an individual experience.
Sloan!!!!! That's the top item on my bucket list. Iceland is where I actually want to go but the northern lights are my top thing to do before I die.
Jill, once you get about a week or so out its remarkable how quickly you start to heal. I am using my calendula cream again after stopping because it's expensive. It's amazing how great my skin looks and feels. It is the reason my PS was willing to do implant on my radiated side. I highly recommend it once you stop needing whatever your RO recommended.
LG, you poor thing!! That's just awful. My breast MRI was not bad at all. It was an open machine.
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thanks all. I definitely feel like I've had a hard time, I know there's people that have harder, but at the beginning of this it was a tiny little tumor, less than 2 cm. But I still needed chemo, still needed radiation, my skin has come out of radiation very badly, and because it was in my lymph node I live with even more fear that it will metastasize
Dara people always tell me how lucky I am that I caught it small and early, and did not need a mastectomy. And although I certainly know that there are much worse cases than mine, right from the start, I definitely don't feel look at lucky or out of the woods! Also, although there are definitely women that need mastectomies, I also know a lot of women that have them have similar diagnoses/risk to mine and could've gone my route as well (so I didn't have the less intrusive surgery because I was "luckier", but because I chose it).
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I've been looking for calendula cream...can't find it. Maybe online?
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This is the one I use Jason's baby calendula
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LTF- I SWEAR- the cooled cabbage leaves provided the best relief...switched them out as they became "hot" every evening...I was also icing and using the prescribed ointments....and, as someone stated....one day I was miserable with weeping/bleeding open sores and the next...things started to dry up and got better daily!
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Tried the cabbage today, it didn't help much but I will try again tomorrow. Hoping to turn the corner soon!
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Molly - I'm up for a trip to iceland when you are!
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I think all of your posts are awesome and I cannot add anything. I agree with all that has been said. Thanks for posting so eloquently.
I am so happy that many of you will be getting together, even if it must be postponed. I will be there in spirit.
Dear LTF: I am hoping that your skin heals quickly. At least you are PFR now.
Dear Dara: I hope that you have good results and you will not need to have chemo. Good luck. It is definitely scary. The waiting and wondering is the worst.
Dear Sloan: Yay for good results.
Dear Sandy: You always have so many fun agendas planned. Your posts are always rivetingl. I wish you the best with your medical appointments.
Dear Peggy: I am happy that you will finally be getting your belongings soon.
All that I can think of regarding breast MRI's is the "porn" position (due to autocorrect, for those of you who missed the post a while back). lol
Dear LG: Your MRI experience sounds horrific.
My cousin had a breast MRI and the technician missed my cousin's vein. Her arm swelled to the size of a softball because all of the contrast ended up in her arm instead of in her veins. She said that it was extremely painful. She complained during the MRI but the tech's did nothing. Needless to say, she went to a different facility after that experience because the MRI had to be repeated. After that happened, my cousin had to have a second lx because her margins were not clear.
While bc is always in the back of my mind, I feel extremely lucky.
I am so glad that I "met" all of you on this site. Everyone is so positive, appreciative, and helpful.
Happy 4th of July.
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614, we are lucky that we found this site and have so many wonderful sisters in BC. We'd never have met otherwise. I treasure the friendships I've made here and the terrific support I have received.
Happy Fourth!
HUGS!
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Dear Peggy: I totally agree with you.0 -
LTF, my friend suggested this brand. She did radiation last year and said this worked best for her. http://mygirlscream.com/
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Dear LTF: You seemed to "sail through" chemo but rads seemed much more difficult for you. Is this accurate?
I hope that you feel better soon.0
