INSOMNIACS place to talk in the wee hours
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Spookie- your question is such a good one. They ran the BRACA on me initially, because they thought I might have an ovarian tumor at the same time I got the BS dx. It turned out to be something else. All the other genetics panels done since have been suggested because I had bilateral and that is usually genetic. There are new gene panels that have connections to other types of cancer like melanoma, pancreatic, colon. If you have the genes, you may be at risk for more than one type of cancer. Nothing has come up positive for me.
I don't have children, and I talked to my MO about how much I should disclose or not to family about my bc? He said it is the parents, aunt or uncle, sibling connections that they are most concerned about. I had an uncle who had prostate cancer. I have one sister and she has had bc too. I have one nephew who is adopted. He said beyond that circle, sharing with cousins and their families is really optional.
I told myself if any more genetics tests come up, the answer will be no. I will think about it and let them know at a later date. The only test that really seems to have helped me with the genetics stuff is the Oncotype for treatment purposes.
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Thanks Jazzy. Wasn't asking for me. I think I mentioned my DDs room mate, the extremely obese one, has DCIS. Her lumpy is next month. She is seeing my BS. I'm not sure why she and DD were discussing this, but your answer is pretty much what I thought.
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I have never met my half sister and don't know her married name. I've thought it would be a good thing to let her know, but have no idea how to contact her. I looked at Facebook for my half brother's name, but there were 6-7 of them. I don't even know where they live.
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Spookie- yes, I thought you might be asking for another. Another story around BRACA. A friend of my sister's had ovarian cancer when she was in her 30s. It came back as a brain met 10 years later. They were able to treat her successfully both times, and she is now in her mid 60s. She is of Jewish heritage and when DCIS showed up last year, her doctors recommended she do the BRACA test to help determine what the best treatment options might be. She came up positive. Several doctors recommended bilateral mastectomy, another said lumpectomy to remove the DCIS. She chose the later and had the surgery last fall and okay so far. She has no children, but there may be others in the family that need to know. I think they are pushing the genetics tests more these days.
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(following the BRCA thread with interest)
(also trying to wear myself out after a visit with the MO today)
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Queenie, How did the visit go?
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Hey y'all
just popping in to let you know i am alive. heading out of town this weekend to visit my parents finally, and will have some time to sit and read and chat when i get there.
love you all!
jeni
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Ms. Chevy, I have not tried any meds yet for the tinnitus. Mine comes and goes,it seems. It doesn't bother me as much now possibly because I have learned to ignore or live with it. I find that it's worse when I don't get enough sleep. How long has she had it?
Ms. Sas, where do you put the vib ( I am afraid to spell it out because some people might get the wrong idea haha)? Mastoid bone?
Jazzy, thanks for the video. The kid is a prodigy and a character. The future Chopin.
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Sorry I haven't been here in a bit, but its been plain crazy here lately. My Avon business is still doing okay, despite pressure from my District Sales Manager for me to build a team (don't have the time or interest in doing that) and to increase my sales massively (she wants me buy the brochures and then take orders from people the old way and put out the money and then wait for me to get paid. Wrong!!!!!!!!!!! Not doing that either).
Other than that things are finally slowinng down so I'll be here more
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Morning gals! Such good news today for the families of that Theatre Massacre! 3 years ago, this moron went into an Aurora theatre, and shot up the place, and as many people as he could.... GUILTY in the 1st degree! Still have to decide if it is the death penalty, or life or whatever. So much for those victims and families to go through! He was even charged for injuring people in the adjoining theatre, when the bullets went through the walls!
It was sheer chaos! We all thank the jury folks for having to go through this, and re-living what this mad-man did. I just can't imagine....
Also, Sass, I forgot which vibration you used? Loverly, did anything help you, other than getting used to it?
Sheri got home late last night.... She and her Sister and one of our Grand-sons are meeting in San Francisco in September to see AC/DC! Then driving down the coast to San Diego.... !
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Wren: the visit itself wasn't bad--no substantive change in diagnosis. It's more I'm strugging to accept emotionally the treatment that I can accept intellectually.
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Good morning ladies!
Queen- hope your apt went well yesterday. Keep us posted on next steps as you would like to!
Chevy- I saw the news about the Aurora trial. I am sick of people going into public places and mowing others down.
Mommy- nice to hear from you. Too bad the Avon people don't get you are not looking for a "management" job and that you are not interested to build a team.
JWoo- nice to hear from you and enjoy your time with family!
I have a busy few days ahead with professional and personal things. Wishing you all a good day and good weekend!
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Jazzy: sorry, still trying to process everything. This was a fairly brief followup appointment: and the short version is "diagnosis essentially unchanged. Treatment unchanged (radiation and tamoxifen) Make an appointment with the RO to set that up, and appointment with me after you've finished that.."
So now mainly work on alleviating the symptoms of stress (sleep disruption, loss of appetite, mood swings/lashing out/tears) without being able to remove the underlying cause. To follow up on a previous question: my stepfather did contact a colleague of his--not a full-blown official second opinion, but simply a second set of eyes to evaluate the information and he confirmed the treatment plan as appropriate.
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Thanks Jazzy.
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Queen- sounds like a good meeting and know there is much to take in. Hugs.
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(snorts) I just wish my subconcious wouldn't wait until bedtime to start dredging up all the Horrible Whatifs.
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Good morning lovely family.
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Did a new thread yesterday. The topic box will explain. It's one of those things that has been need around here for along time. It may not be useful to you at all---maybe never. But it's there in case
https://community.breastcancer.org/forum/102/topic/833446?page=1#post_4441865
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Morning Owlies, lot's of stuff going on. I need to do stuff for DBF today. I will catch up later. Loving all of you. You are all important in my life. Thanks for allowing me to be in yours Bless you all.
A quick helllllllllloooooJwoooooooooHooooooo in case you see this before you goooooooo. Have Fun (Waving) sassy
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Queenie, you are on the tough part of the emotional roller coaster ride currently. Like I mentioned before, I couldn't sleep, eat, or concentrate after I heard the "There are microcalcifications and it (the lump) looks suspicious. We need to do a biopsy. Do you have time?" Sitting in that cold semi-lit room, I remember clearly the nauseous feeling I had in the pit of my stomach. Tears rolled down my face as I thought about my children and aging parents. I had never felt so alone. Waiting for the result was the worst...not only once (biopsy first), but twice ( then pathology report of tumor). Biopsy came back DCIS....yay, it's not so bad right(?) because it's "contained" .....on to removing the "monster" out of my tiny breast. Lumpectomy or mastectomy?? Decision, decision...more stress. With lumpectomy, I will need radiation. Radiation near where my heart is...hmm?? Plus, there will be very little tissue left in my already really tiny bosom.That doesn't sound good. Ok, Mastectomy then. I just want the little monster (well actually not so little-3.4cm per ultrasound) out before it morphs into the devil. No opening for 3 weeks???? Ok..sigh..I will wait. What else can I do? While waiting...What if this comedonecrosis (high grade) cells figure out how to jump out of the encasing membrane and invade the surrounding areas? More sleepless nights and stomach troubles. Mind tends to wonder at night when it's quiet and you are not distracted with the busyness of life. Queenie, are you bored yet? Ok...fast forward to waiting for result(it seems like the more you know, the more you worry). Phone call from surgeon..heart is beating really fast....."your nodes are clear, pure DCIS,and we have clear margins". Happy dance for a few days. But, wait,I still look like a freak with one boob!! Unicorns are pretty, not Uniboob. Forget about intimacy with my poor self image. Poor DH. About 3 weeks later, another phone call from my sweet surgeon... " They did a revision on the tissue and found microinvasion. I am really sorry I need to refer you to Oncology as your stage has changed. The good thing is the microinvasion is very small." Oh shoot, does this mean I need chemo now? How could the pathologist missed it the first time? Back to the peak of the roller coaster ride. I think you get the picture of the emotional roller coaster ride, yeh Queenie? Thank God the invasion was very minute and chemo was not warranted.
On the one hand, I am grateful I was/am spared the chemo, Tamoxifen, and Herceptin. but on the other hand, I worry about risk of recurrence because of no "insurance" and the characteristics of the cells (Her2+ and grade 3). I think most of us developed some form of PTSD afterwards. The one thing that really have helped me to get me through this nightmare is my faith in God. What I have learned for myself is that I need to give up trying to control things that I have no control over; otherwise, it will eat me up inside. I have to admit that it is a very hard thing to do as I like to be in control. I wish you find peace. Hugs to you.
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Still trying to catch up. All have been busy and I see lots of pretty faces even thru difficult times. Lovely - I love your pictures. I saw the tree tunnel one last night.
Unfortunately no time to catch up this morning more than maybe a page or 2. Yesterday went to the colon/rectal surgeon for my hemi's. Liked him even though he is way older than most of my docs. Says yes they are bad, prob. getting worse but not banding or sclerosing ready. TMI I know. The drill of course, less sitting, more doing, more fiber. Some suppositories that he just knew I could get at CVS/Walgreens. No - after DH and I made 5 diff. ones on the way home. Can you say DH was ticked off at me. Yes can be ordered on Amazon (DH sprang for AmazonPrime recently) but not advised during hot weather. Did find a compounding pharm I knew of in town that will order them. Now to try my local grocer pharm. Know of another compounding pharm just up the road. May call them.
BUT - I need prayers for my doggy Terra. Not sure what is going on with her. Now having intermittent bloody poop. Have vet appt at 2 in the awful heat. She's in no distress so I've been putting this off. She is a terrible grass eater which I know means something's not right. Periodically will not eat, even treats. Acted like a young pup when DD was here this weekend. Whatever money I saved on as DH calls him "butt doctor" I guess will go to the dog.
Love you all bunches. Wish I could meet up with some of you. Seems nobody lives in North Texas. Gads - asked DH how long a drive to Austin. They have a great group meetup regularly.
Queenie - It will get better. Just tell yourself I only have to get thru this minute then the next minute, one foot in front of the other. I apologize for not being too exact about your circumstances, my bad for not keeping up. Rads was not the most pleasant of things toward the end but easily doable and knew that's what I had signed up for from the beginning. You'll get the routine down pat soonest you start. I hear a trip is in your future. Enjoy and put any ol' BC thoughts outta your mind.
On to DH's laundry pile. And locating dog's travel crate in the garage. I had the biggest wolf spider I've ever seen in there the other day. Not that there are hundreds of places she can hide lol.
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Lover: hanging onto that thought like a lifeline--it's worst in the beginning. But you're right. That roller coaster may last through the entire treatment.... Also to the chitchat of normalcy, music, pictures, concerts, battery operated toys.
I've often thought in the last year that I wish psychological support (in the medical sense) was offered from the moment doctors need to set up diagnostic tests, like that first biopsy. I really appreciate how the radiologist handled the abnormalities in my baseline mammogram; I can't remember exactly how he phrased it, but something along the lines of "Right about now, you're freaking out, because that's how pretty much everybody reacts to the suggestion that they might have cancer. As soon as you leave here, you're going to rush out and read up on breast cancer, and get more upset. But what I want you to take away is 'Although this triples your chances of getting breast cancer, all that means is you've gone from 2% to 6%'. Part of the problem now is that we have nothing with which to compare this, so we'll schedule another mammogram in six months. Until then, you can put this aside and get on with life."
Some people really do get diagnosed with their baseline mammogram, or why I'm glad that the guidelines got bumped down to "start screening mammograms at 40'. But that wasn't the case for me.
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Sending positive energy your way for you doggy Luv. Hope all is well.
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queenie, from one DCIS sister to another, I'm so glad we got the kind that's not going to kill us. That's what I had to tell my 87 year old Mom. I think that was the hardest part for me. She now worries excessively about me. I can't help that. That's the part to remember, especially stage 0.
What I hate now, is every little thing that's comes up now I worry will be cancer. Can't seem to stop that. I think that's part of what we lose, the innocent we had before BC. I had a few friends that had BC but it didnt really sink in until it's my turn. CRAP. Wish I had been there for them more.
On a better note, I'm in San Diego now, got here on Wednesday. Sewing convention. Helping my friend in the classes and booth. Been busy and my feet already hurt! I just might treat myself to a new serger, have to check out types and prices. Our next sewing trip will be to outside of Detroit in September. Anybody around that area? I'll get some pics today.
Everybody have a good weekend
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oh yeah, have you seen the news articles about docs wanting to elimate mammograms? Panel of experts.REALLY!!?? Says it causes more procedures and isn't saving lives like they thought it would. Now a days because they can keep you alive longer with the new drugs, even those with stage 4, that it isn't worth still doing mammos once a year or every 2 years. Don't think that's going to fly. Too many women know someone with BC to take the chance to not find it early.
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Smaarty: (waves hello) Working on being glad about that myself. And that's pretty much what I told my father; "This one's not going to kill me." (The implied "That one" being last year's possible diagnosis of ovarian cancer, what killed his beloved sister.)
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Smaarty - How about a sewing convention in Dallas?
I have 2 friends who have sailed thru BC, one is at least a year later than my DX. She is leading trips to France and Italy at age 68. I can barely walk around the mall. And yes she's on an AI.
Oh Queen - how sad. No wonder you're questioning about ovarian CA.
I like the story that sitting causes cancer. Sorry if you're a computer operator or secretary, you're doomed. Kinda get the drift of the story but as usual an attention grabbing headline that is untrue to the story contents.
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lmygoats, the ASG group does meet in Houston once in awhile. Hopefully they'll be back there in 2017. 2016 is in inndeapollis. (Sp)
Sorry queenie, you did say something about ovarian. But you didn't have it, right? Just a really crappy scare. That means they did sx? Yikes!
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Just got notified by my District Sales Manager that I hav some goodies from Avon coming my way because in June there was a contest to see who could accomplish as many goals as possible for that month. That was my biggest month for sales and increasing my customers, in addition to accomplishing all of my goals I had set out for that month!
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Luv/Smaarty: thankfully, THAT cancer scare came to nothing more than a crappy scare--the radiologists picked up an/my enlarged ovary during an MRI for my disintegrating back, and I was instantly diverted onto the 'cancer track' (can't remember what I've mentioned on what thread) I ended up losing only one ovary, and considering myself lucky at that; it turned out to be "only" endometriosis. Qualified because I was completely asymptomatic: no menstrual pain, beyond an occasional cramp, and no irregularity before the ovarian surgery..
But it's is rather why I wish oncologists started the psychology intervention at the point when the diagnostic process starts. Not necessarily a referral to mental health professionals but at least an acknowledgement that this is an inherently stressful process, and patients will start worrying before the cancer's been confirmed.
Sitting causes cancer? (bursts out laughing) We should all be dead! Is there any scientific direct correlation between the two? or is this on a par with underwires causing breast cancer?
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