CALLING ALL STAGE I SISTERS
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vhshea: Ouch! I suppose people naturally get some sort of satisfaction from sharing "shocking" news. I have tried to discuss my cancer only with family and a small group of close friends (and my medical team and several support groups). After finding myself in a few very upsetting grilling sessions by casual acquaintances early on I asked everyone to please respect my medical privacy by keeping a lid on it. I did have to specifically request it and a few people were really puzzled by that.
One friend doesn't understand why I would ask such a thing and wondered if I was in denial (huh?). Someone else (a former coworker who has breast cancer and with whom I haven't spoken in at least 5 years) who heard very early on emailed me that she didn't understand why I didn't want everyone to know, that it wasn't good for me to "hold it in". I tried to explain that just because I wasn't sharing with everybody (like former coworkers from 5 years ago) didn't mean I wasn't sharing with anybody!
I have coped very well by trying to live the rest of my life as normally as possible. I am not in denial, but I don't want to discuss cancer 24/7, have people be afraid to talk about happy things, or stare at my chest trying to figure out what sort of surgery I might have had. But, that's just me...
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Tina- exactly - talking with you all and with my friend who is also DX w/ BC is enough - I do not need to share everything with everyone else in my life - BC is time consuming enough... I will use your tag line of respecting my medical privacy. ok - I feel much better!
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vhshea, I'm really sorry to hear you're going thru this with a coworker... their actions in MHO were inappropriate to say the least. I would ask myself what do they have to gain from forwarding the email????
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Tina & vhshea.
I can relate to both of you.
When friends and family asked what they could do for me. My first request was that i needed to be treated like a normal person. And i didn't want to hear the word oooh you poor Sheila. I meant it.
So one night about 3 days after my lumpectomy my daughters friend came over for dinner. DD loves to cook. Everything was cooked and Im still on the couch waiting for my food.
Finally I said I'm hungry. Well I have been told since I asked not to be treated differently I should get up and serve myself then they both started to laugh and they were right.
I felt if I wanted to share I will.....Even now if I loose few pounds by choice one neighbor gets all nervous that the cancer is back.
I really think outsiders are more afraid than we are.
(((HUGS)))♥♥
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vhshea: that is CRAZY - I can't believe they didn't have the sense to let you tell your boss if you wanted too! But in your case, I guess the "do not forward" needed to be used..
Fortunately, my bosses are good friends and I didn't mind telling them, but they didn't tell each other - they left that for me to do.
I don't feel you are petty, but at this point what's done is done - but vent any time you want too...Venting is very therapeutic!
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Hey Valjean----somehow i missed seeing you....gosh its good to see your face.im hanging in there like the rest of my sistas.takin one day at a time and tryin not to bitch and complain too much.as i read the threads with all the problems all i have is Edema .....and its nothing to complain after reading all the other big problems.
sending gentle hugggggggs to all my sistas.God bless K
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Dear vhshea, I know exactly where you're coming from, so you vent all you want. I had a boss who was such a psychotic b....that I was forced to take early retirement. A co-worker found out about my DX and emailed me that she hoped I didn't mind, but she had told my ex-boss and that the ex had sent out an email to ALL of the hundreds of employees of the companies. Most of whom I don't even know. Did she send me an email asking how I was? Course not, 'cause everything is all about her. I saw the ex-boss two weeks ago and she acted like my long lost friend and asked me to pull over and talk to her. Of course, I drove off and didn't even look in my rearview! You're not over-reacting and you're not petty. You have every right to decide who shares your personal information. If BC has taught me anything, it's to rid my life of toxic, ill-intentioned people. I'm finding new friends who have true hearts and compassion. And this forum is a sanity saver. Anytime you need to vent, my ears are open. OXOXOXOX
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vhshea you do not have to apologize. It is your right to share the info you want and with whom you want!!! It is private information. I shared my diagnosis with a friend and asked her not to share it with others, this with others out of state where we use to live. She betrayed my trust and shared my diagnosis with someone I haven't even talked to for years. I no longer speak to her. Sacred trust once broken is something you don't forget.
There are a very select few that I share the nitty gritty with.
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rohanna---I have always been a good sleeper, but once I knew I had bc until I found all my results after the oncotype DX and finally found out what my treatment would be. I did not sleep well and prescription sleeping pills did not do it for me either. I did not try anti anxiety pills but I know some people get relief from those. Once I knew what my treatment would be my sleeping went back to normal. During rads I slept great because i was so tired. Now that I am on Tamoxifen it has caused insomnia. Spent two months on prescriptin sleeping pills and now am able to manage on melatonin. Do whatever you have to to get a good night sleep. Your body needs it.
vhshea-you are not overreacting at all. I work in a small office just me and the boss (male) I am not comfortable telling him details and he is not comfortable hearing it. I tell him the big picture.
cake- so sorry you are having to get this lung thing checked out. Praying for B9
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Thanx bonny. I'll check with the dr. I have been on hormones since i was 37--yeh, and im a lil suspect of the hormones since i ended up w/bc. The tamxf seems t be helping. ? The nt sweats arent as frequent. Im really hoping that this will finally end me. Menopause.My real issue now is since i had a dbl masx, these expanders and the once a week(fill up) is so painful. hmmm, ???
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Hi:\
I have been 4 years since my lumpectomy on my left breast and almost 1 year on my right breast.
I had a lumpectomy on my left side (triple negative), no chemo or rads (my decision)
Also a lumpectomy on my right side (positive), rads only due to not getting a clear margin.
Diagnosis: 30/98/07, IDC >1cm, Stage 1, Grade 2, 0/2 nodes ER-/PR-/HER2-
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Welcome to our Sisterhood Malady♥0
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I made a Mammo appointment for June 22
Oncologist is on June 20
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Thanks, Sherryc. I found some stuff at the drugstore called MidNite and it has Melatonin and some other homeopathic ingredients. It's working really well. I'm also on 10 mgs of Prozac and it's made a big difference. The blues sneak up on me sometimes so I try to redirect myself. I start my RADS Thursday so I hope the sleeping thing straightens out. It also helps to have an awesome group of ladies to talk to. I love you girls. OXOXOXOXOXO
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VHSea - I'm so sorry you have been through that recent unpleasantness at work.
Sometimes people just really Do Not Get It, grrrrrr.I have had a hell of a weekend. Friday I was sent to a town an hour and a half away to do an MRI and a follow up ultrasound. My radiologist wanted them to check something he saw on my left breast, in a different location. The MRI was fine - actually, the tech was really great. I got to the "Breast Imaging Center" where "All they do is this, every day, so they are experts" at 10:30. At 11:15 they pulled me back to tell me the doctor I was supposed to see wasn't there today and they didn't have any of my paperwork or information (luckily, I had my big-ass binder o' Cancer Chick Stuff. NO WAY was I driving an hour and a half home and coming back another day because they didn't have it together). They made copies of everything (while I faxed my doctor's office for the cat and bone scan results from last week) and sent me off on my merry way back to the waiting room. I waited and waited and WAITED. When I finally got taken back to a room, it was 2:25 p.m. The u/s tech did her thing, it took about forty minutes. 'Cause why? Because (as she let slip) they thought my radiologist got the report wrong and what they were looking for was in my right, supposedly disease-free breast and not the left. (?!?!?!?!?! That was the first time I heard that and it came from the u/s tech?!?!?!?!) Then, Dr. Coldheart came in and said yes, they think my radiologist miswrote the report, and the CAT and MRI scans are showing a 4 mm something in my right breast. She ultrasounds again doing exactly what the u/s tech did. THEN she sends me back to the waiting room. Then I get pulled back for a set of mammograms (and the mammogram tech kept going out and coming back and doing another one because she didn't get what the doctor wanted). It was INSANE. THEN, the doctor came back and said "well, there's a something, but it is very possibly benign. We should biopsy, but you're not a good candidate for MR biopsy because of the location, but we can do a clip biopsy. I can't see it on u/s or mammogram because your breasts are so dense. I'm like well, won't chemo zap anything that might be cancerous, and if the MRI and CAT scans are the only things pickjing this up and they are notorious for being highly sensitive and registering a lot of false positives, and I have had three ultrasounds and eight mammogram shots and you aren't seeing anything there, then what are the odds it's nothing? Her: The odds are good. But in the instances of cancer in both breasts at the same time they don't recommend breast conservation. Me: ARE YOU TELLING ME THIS THING I DIDN'T EVEN KNOW ABOUT IS CANCER?! No, not necessarily, there's a good chance it isn't. We won't know for sure unless we biopsy But if it is, then yes, you might want to consider a more aggressive approach. (Read: She clearly is advocating for an "extreme home makeover". Just to clarify, I asked her what my options were). Her: We can just follow it with MRI every six months, it depends on how aaggressive you want to be. Me: In your professional opinion, you're telling me you would recommend a double mastectomy and oopherectomy? Her: your age is very troubling, because you are so young. I mean, she didn't really address my questions, just made me feel more and more hopeless about it all. Finally, she was all, I'm going to send all of this over to your doctor and let you talk with her about it. I left there after eight hours of testing feeling so much worse than ever before, thinking for the first time in all of this I might actually die. It was horrific.
My doctor called last night: The CAT scan never saw whatever the MRI picked up on. The CAT scan report was correct, and my radiologist did NOT miswrite it. She has no idea what they were doing with the right breast stuff, unless they looked atht eMRI and then thought they saw something on the CAT scan that my radiologist missed. But I told her I am NOT going back there, and she quite agrees with me. I am being sent to a different hospital from now on (a top-ten cancer research center, no less!!), but it means everything goes on "pause" while the new hospital evaluates my case and determines what to do, so I am not starting chemo this week. It's soooooo frustrating!!! But I keep thinking: What if I were not an educated, academic researcher, and this happened? What do women do?!
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Wow, Melmes, what a nightmare! Sending gentle hugs your way.
Sheila, I have you down for prayers.
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melmes - wow. just what you need when you are already dealing with this stuff - and that binder o' Cancer Chick Stuff - yep - we all have those. Hoping the new place has its act more together.
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Melmes how terrible and to spend all day like that. ((((((((((HUGS))))))))))
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Wow Melmes that is crazy.. sorry you had to endure that to find out how ignorant they are... I am so happy for this forum.. that way we are educated about what SHOULD happen..that way we know when something might be funky... *Hugs*
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Wow, Melmes. What an experience to have to endure. You think people who are dealing with cancer patients would be a little more careful with everything. Sorry you had to go through that, but I guess just be thankful you are on the rigfht track now. The beginning stages of my diagnosis were pretty confusing and disheartening as well, but I finally went to a major cancer center and got right back on track. Good luck with everything...
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Melmes-for whatever reason when I see your screen name I think "mallomars" so that's my recommendation-go buy a bag of chocolaty marshmallow cookies & pig out. Then call up the incompetents while you are on a sugar high & let them know EXACTLY what you think of their operation!! Should make you feel better.
I'm glad your regular doc has a brain.
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My doctor and my oncologist have now both confirmed that my radiologist wrote "left" and meant "left", and they have both looked at the CAT scan and seen nothing in the right side My oncologist even showed me the scans and took the time to explain how to read them so I could see for myself they weren't just trying to hide something from me to keep me calm. He says he wants a biopsy done now just to rule anything out, but he does NOT want me to worry and does NOT think they will find it to be anything. I should get evaluated and seen at the other hospital sometime in the next two-three weeks, and he wants to start chemo immediately post-biopsy - a week if it's benign, two weeks if a lumpectomy is necessary. I am so lucky to have a team that cares about me. Thank you so much for your support also - I wish everybody with cancer everywhere in the world had the resources we have here on this site...I hate that there are people without Internet access and people without the education or knowledge to use it.
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{{{{{Melmes}}}}} Praying for good results at your new hospital and testing!
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awww melmes...that bites. It sounds like you are on the right track now though...here is hoping you sail through it all.
made an appt with BS for my 6 mos ultrasound mammo...she does it in her office...argh i don't like tests.......................................................................a week from this thursday.-just call me anxiety anna
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Melmes...This is for everyone who made your day miserable.
We love you my Sister♥
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HI ANNETTE
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alt="" width="247" height="204" />HIYA SHELIA!!!!!!!
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HI SHEILA
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melmes ~ What a runaround you have received. They don't have any sense of what a bc patient goes through as it is, let alone keeping one waiting & running more scans/tests, etc. Sounds like you have a great team of drs working for you now. Keeping good thoughts headed your way.
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