Lumpectomy Lounge....let's talk!
Comments
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keepwalking I know where you're coming from. I had four plus weeks between DX and surgery. And because the surgeon is the one who found the malignant lump my surgery date was already set from talking to her about the papilloma. Except for one day doing pre-op, MRI and genetic testing, and a second ultra sound during those 4 weeks I had nothing to do about the cancer. I took my Cubs to summer camp for 5 nights, got my kids back to school, ran a lot and generally acted like a healthy person. It was totally surreal.
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Thank you, outrunning. It probably is stress. I need to get back to my job so I don't have so much time on my hands.
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Molly its internal radiation....
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Wow, very cool and high tech!
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Well, I saw the RO today. She was very nice, quite informative. I showed her all my lab work and surgical pathology and she recognized that I have done a LOT of research. While I was there I thought, heck, let's really just roll the dice here, so I opened up to her about the whole Oncotype and chemo business. The RO was sympathetic and concerned, I think. She also reminded me that I need to feel completely confident in my decision-making. So I asked her for a referral to another MO and she went right to the phone and called one! I have an appt on Thurs morning to see the MO, aaaaaand she's located about 12 miles closer to where I live!
Later on tonight I need to call my mother and let her know what's going on. She called me last night, and being the terrible daughter that I am, I let it go to voice mail because I just didn't want to talk about this. Bless her heart, I know she doesn't mean to do this but she is a very pessimistic person and I know that when I give her an update, she will be all gloom and doom, and I will lay 20 bucks that she will tell me about some friend of a friend's hairdresser's cousin who either had chemo & rads or DIDN'T have chemo & rads, and she DIED! I feel like I have to gird my loins before I enter a conversation with her, just for my own protection and peace of mind. Poor mom. It must be hard knowing your daughter has breast cancer.
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Poodles, it is very hard living with a pessimist. DH was one. Like you need more doom and gloom - your own mind does well enough in that department. You need to hear about the hair dressers friend of a friend who did FANTASTIC! Tell your mother that! It's hard. I told DH that I didn't need for him to look at me like I was dead. It helped some. Nothing can change a pessimist though, sadly.
But HOORAY on your RO understanding where you are coming from and taking you seriously. She's a keeper, don't let her escape!
Write us after you talk to your mother and we'll make sure to counteract all the crap she tells you about! HUGS and more HUGS - you'll survive her stories. HUGS!
HUGS!!
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Good for you, MLP! I agree with Peggy that your RO is a keeper.
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MLP (et all) This is why I love this lump lounge! I was feeling silly because I had almost the same reaction when I found I I didn't need radiation or tamoxifen. I kinda went through this "are you sure - do I need a second opinion?" I felt like I went from 60 mph to a dead stop over night and it left me with a lot of anxiety. I was seeing some doctor or another every week - surgery every 3-4 weeks and then . . . nothing! Half my mind was ecstatic that I was done and "cured" but the other half of me was thinking "but who's going to watch me and make sure this stuff doesn't come back" Like you all - I think I was prepared to do anything and everything to prevent recurrence and had geared my mind on the long haul. It's a difficult adjustment to turn the other way.
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mlp...I'm feeling mushy tonight. Your story is so courageous and powerful. Looks like you've got it together. Wow. Good on you.
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mustlovepoodles- I stop relatives who talk about cancer and death by saying, "Positive stories only, please!"
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Outrunning - Thanks for your understanding of the surreal feeling. How did the meeting go with your MO?
Molly - I hope you are managing to keep the stress in check. I know, I know... it is difficult. We had some friends come to visit last night that we don't see very often and that was a great stress reliever. She is also a member of the "club" and is very positive.
MLP - I'm so happy for you that your RO is supportive and understanding, and went to bat for you to get an appointment with second MO! It's too bad that the results aren't out yet from the Oncotype study dealing with the dreaded middle range. Hoping with you that you get the answers you need to feel confident in your Tx plan, whatever that may be. In your pocket to nudge you to stand up against negative talk (with respect, of course
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Is it just me, or does anyone else dislike the well-meaning stories, even if they are good? I would just rather that someone offer a word of encouragement without the stories. Even the saleslady helping me find a bra felt the need to tell me about her friend of a friend! I mean, when someone has a baby people don't all come up and say, "Don't worry, a friend of my SIL's cousin's babysitter had a child and they turned out okay" -- because people generally expect that most children grow up relatively well-adjusted and sane!! So, what they are REALLY saying, between the lines, is "gee, a lot of people don't have a positive outcome, but I sort-of-distantly know someone who did". Just sayin...
(okay, maybe the stress isn't completely under control...)
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Rina: the stories, positive or negative are one reason I have wanted to keep this private. Easier said than done now that I am losing my hair and I don't want to do a wig for no logical reason....Even if they tell you something positive they will still have that pitying look in their eye. but actually I find Sloan's suggestion: "Positive stories ONLY please" to be very helpful. Thanks Sloan, I am going to try that myself. I figure if nothing else it will get them thinking about what their motivation could possibly be for telling the negative stories. People are thoughtless sometimes.
I do have some relatives and friends who have decided to deal with that issue by avoiding me altogether. That hurts too.
I had a bad experience yesterday: first day in the office with bald top of my head covered (hair still there and fairly thick on the sides, but totally bald on top :-( It was already short). but I wasn't quite ready with a few scarves and wide hats on order, So, I just put on an extra wide headband and my Giants cap (sadly, the mojo didn't work and the Giants are officially out of it :-( ). Anyway, no one said a word (maybe they just thought I was being my usual obsessive Giants fan self) until a coworker I don't know well (same organization, different departments) poked her head into my open office door and said "I see you are having a bad hair day today" (or some such). UGH! HOW RUDE even if I was just lazy about doing my hair. Who comments negatively on someone's appearance who isn't well...themselves in the mirror? (heck, I don't even comment like that to my husband, who still has less hair than me for another week or so...).
Hang in there.
HUGS TO ALL!
Octogirl
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Octogirl sorry your coworker didn't think before speaking. Sorry about your Giants but hooray for the Dodgers!!
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Octogirl, that was quite thoughtless of your co-worker, but, perhaps she thought she was being funny (which it obviously wasn't). I tend to take things personally when they weren't meant that way and I suspect most of us do. Would you have been upset if you weren't going through chemo and were just having a bad hair day? Just a thought and not to minimize what you felt - which was totally justifiable.
Have a shave your head party with kids and other supportive relatives. See if it can be a rather positive experience. It IS the outward manifestation of what you are doing to KILL CANCER and says to the world that you are doing everything to make sure that happens. It's easy for me to say since I'm not going through what you are, but my DIL did that and had the most positive attitude of anyone I've ever known with cancer (colon in her case).
HUGS to you!!! More HUGS!!!
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Octogirl - Yikes! Sorry for the remark of your coworker and that you are having to do the cover up sooner than you were prepared for. But great that you were ready with the Giants cap! Yeah, people can be thoughtless sometimes. Ouch.
HUGS to all.
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Octogirl I'm the totally opposite about my DX. Very open about it. Good thing too, I work in a cubical and have a voice that carries. So it would be nearly impossible for me to not be over heard. So fortunate I don't care who knows what. Still, I'm upset for you that someone made rude bad hair day comment.
MO Confirmed tamoxifen but no chemo. Not even going to run the Onc test. I actually met with two doctors. I'm not sure what was up with that. Perhaps the first is in training or something. They sort of repeated the same treatment info, but the first went to more lengths to confirm all the history of my BC journey. First doc wanted to discuss with the second if my tumor should be considered at .4 cm which was the largest one, or at 1.3 cm which was the total of the 6, when deciding to run the Onc type or not. Second doc said 'no' they don't get considered as a total. And what I got out of what was said is that it doesn't matter what the oncology type is because I didn't fall into a profile to get chemo regardless. That the benefit on top of radiation would not be great enough to make it worth dealing with the side effects. So no chemo. And I'm just fine with that.
I'm basically still getting the message that I'm super lucky and that if I've got to have cancer, I've got the "good kind." So I'm going to continue to be super grateful.
Next step: Radiation Simulation on Friday.
Also, told to stop my birth control. RO last week seemed a little horrified I hadn't been told that already. But since I only have 2 days left on a pack at that point she let the MO official tell me to stop. When I told my husband he was like "Stop? Forever?" Fun part is she said tamoxifen is related to an older fertility drug and that I should be extra careful because it can make you more fertile. That's a fun fact to be paid attention to by those of us in the approaching menopause but not there yet ladies.
Meanwhile, too much work. And a ridiculous amount of work to get help to do the work. sigh
Also, our insurance plan (but not carrier) changes tomorrow. Praying that going by as the none event that they say it should be.
Hugs to all you lovely ladies. I'm reading but little time to write back.
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I've been quite open, too. With no chemo, I have no outward evidence of BC treatment. And I've been extremely lucky that I haven't had anyone who mis-stepped. DH was the eternal pessimist and already knew that. He was sick with Parkinson's among other things so I just told him I'd be fine and kept repeating it. Everyone else was supportive.
HUGS!
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Well, I finally talked with my mom--pay up, ladies! She listened for a few min while I tried to give her the short version of the latest updates, then she launched into a family friend's tale of woe. Stage 4 melanoma--chemo failed, rads failed, 9 months and then he DIED! Geez Louise...
I think Mother uses these stories as a way to connect the dots for herself. I'm sure she isn't trying to upset me or make me afraid or annoyed. At age 81 she has NO FILTER at all. Of course, she is at an age where she is losing friends and family members several times a year, and that has to be frightening to her. Still, I wish she would recognize that she is NOT an authority on cancer treatment, having virtually NO education or practical training in oncology. Just because you know a few people who had breast cancer (or melanoma or lung or prostate cancers) doesn't make you an expert on the subject and you shouldn't try to give other people advice on the matter!
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Just goes to show. "If it's not one thing, it's your mother."
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Aw, Poodles, I'm sorry. Even knowing what your mother is very likely to do, doesn't make it any easier to cope with it. I'm sure you were ready to throttle her. I guess the only thing to do is turn off your hearing and let what she says go straight through without stopping to say hi to your brain. You're right, she isn't going to change. WE know you're going to be fine! Just sad when someone so important in your life isn't supportive.
HUGS!!!!
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I am sorry mlp. I am glad you told her and hopefully steeled yourself for the inevitable.
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Peggy and all of you: thanks for the words of support about my co-worker...So today the hair is all gone on top but a little on the sides, so I am not sure yet if I want to buzz...had to wear a real 'chemo beanie' type of scarf today. Felt strange. Had lots to do so kept my office door shut!
More later, I hope all have a restful evening. I am off to bed! HUGS!!!!!
Octogirl -
Thanks for the warm welcome - love reading your posts - truly laughing out loud. Duck Dynasty....
My vague compression comment had to do with bras...my total tumour mass was big - 5.5 cm across- so it left a big "hole" I guess. I was following the instructions of wearing a soft bra, and was having bad seroma battles - felt like when I was nursing and engorged, only lasted days and days...Anyhow, a little drainage followed by a really snug sports bra stopped them from reforming, and the girls feel WAY better! Seems that they suggest compression bras routinely in the mastectomy world...
Good news - Yay - got oncotype score today and like BJ, mine is at 17:) Fits into the no chemo slot ( I know others are excited by that, i find it quite scary, too.)
Thanks for the thoughtful responses on complementary things. I did start 2000IU of Vit D and 2000IU of slow release Vitamin C, but will chat again with my MO tomorrow. No yak milk for me
Not quite ready to go vegan either. Pumping up my veggies though.... -
MLP - Oy, I'm speechless! I feel for you having to face this type of reaction when you share things with your mother. It certainly adds stress to you each time you attempt to keep her updated. I also feel for her in that she chooses to focus on the negative, perhaps as a sort of emotional protection. Would it help at all to share with her the positive prognosis, if she would be able to comprehend it? Maybe it would alleviate some of her fears? Or, might backfire. Anyway, we're here for you to try to counteract the effects!
Octogirl - You are going great! Hope you are getting a restful sleep.
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Zinny - Hooray for your low oncotype score and no chemo! Glad you found what works with bras and that you are feeling better.
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KittyL - How did your surgery go? How are you doing?
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zinny...I also found compressive bras worked best after lx. It felt much better to have the girls snugged up and not bouncing around. Now, when you get to rads, it might be a different story. But your lx should be healed by then.
poodles..Sorry about your Mom not being there in the way you hoped for. My Mom is 83. She's sorta the opposite. She says nothing but positive stuff, but she wrings her hands when I talk about it. I can tell that she is totally stressing out on the inside. So I keep my conversations with her short and only share the good stuff. She lost her Mom to cancer. I'm sure she's scared shitless. I have other family members I can talk to.
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Poodles, I think our moms are very much alike. No filter, and my mom is only 68! She has made everything about her and how traumatic this diagnosis is for her! Of course I have heard every horror story. I have told her many times that those stories are not helpful. She thinks she's an informed medical professional because she was an admin assistant to the hospital administrator. Even when you know what your mom is like, it still hurts.
Keys, Me too. After surgery, I just wanted to keep them still. Rads a nice, soft t-shirt was more than enough.
Zinny, Congrats on the Oncotype results!
Outrunning, LOL
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Octogirl, I'm sure your beanie does feel strange. Probably you are going to have more of those "strange" moments until you get used to your new hairless head. My DIL chose to not wear anything (most of the time) after her hair left - that worked for her. My mother wore a wig. So guess you do whatever you are comfortable with and whatever is actually comfortable. I'd think in an office situation if you have cold blasting at you, you might prefer to have something on your poor naked head.
HUGS!!!
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Zinny, Not sure what size your girls are but mine are a barely A and, while my BC was small at 9mm, my surgeon removed a chunk measuring 5cm x 3cm x 2.5cm. So rather large. She managed to make it so you really don't see the hole. Now, well after a year, the underside of my breast where the BC was, looks dented, not terribly funny either. Even I was happier wearing tight bras for a few weeks until I started rads, then I went without any bra. That isn't always an option if you are quite curvy.
And CONGRATULATIONS on the great Oncotype score. I know what you mean about it being kind of scary, too. Now on to rads in a couple weeks or so. I found those a breeze, a bit tedious having to be someplace every morning but I luckily had no issues. Hope you find them the same!!
HUGS!!!
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