MIDDLE-AGED WOMEN 40-60ish
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Good move Home, she may be wondering who YOU are! I learned years ago that when you want to cut off a conversation on the phone to do it while YOU are talking. No one would believe you cut yourself off!! hehehehehee I've actually used that technique a handful of times and it's very effective because they wait for YOU to call back. When you don't, they finally get the hint.
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so, let's see, the header is telling us that 1. we are barking up the wrong tree?
2. we are a crafty cat?
3, don't get distracted by the big things?
4. keep your eye on the details?
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Or:
From the dog's viewpoint:
Accept things you cannot have or were not meant for you.
Accept the fact that you can't do everything.
Try, even if you know it's going to be hard.
From the cat's viewpoint:
Stay in a safe place when danger is around you.
You only need a little distance from a bad situation.
Ignore the negativity around you.
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Good Monday morning! I have just completed the 28 full rads this AM! I only have 5 boost to go. My skin has held up well but I have the darker, freckly skin in my cleavage and over my left foob. Small price to pay! I plan on celebrating by eating sushi with friends tonight.
I spent the weekend with friends who want to but a manufactured home crawling through models. WOW..have they come a long way! Wore my ass out in this 90+ heat but had fun!
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Very cool on the modular house tour!! That concept, as well as "pods" has always fascinated me. If only the land and hydro connections weren't so expensive we could tuck ourselves half-way up a mountain or on a beachfront if we wanted!
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Hello all -
Given the reason why we're all here, I am thankful to find a resource I will be relying on quite a bit in the coming months. Please forgive my brevity at the moment but am looking for some specific opinions/personal experiences regarding the situation I'm facing. I have a follow-up with my breast surgeon in 3 days and am hoping to have some notion of how other women made their choices by the time I meet with him again.
Brief background: I'm 54 now. I had my first breast cancer (IDC), 8 cm, moderately aggressive, Stage 2, triple negative, ALND 0/10 at the age of 38 (yes, 16 years ago). Treatments were Lumpectomy, AC - Taxol, then radiation. Have had the all clear ever since then until now. Local recurrence, IDC, only 6 mm, Stage 1 (clinical), suspect no node involvement but am getting the MRI this afternoon to get more data to work with. Given what surgeon and onco doc are saying, it looks to be caught early and once again, only in this breast.
I know I'm going to have mastectomy on this breast and am leaning heavily toward having prophylactic mastectomy of the other one. I do not plan to have reconstruction. I'm not inclined to wait for the BRCA results to come back (want the $@!* out of my body NOW) but know that I would have to wait to schedule surgery and get a triple negative test result if I do decide to keep the other one. My non-diseased breast is quite large at the moment, but I'm losing weight. So, if I were to keep it and not have bi-lateral mastectomy, I would face having to buy several prostheses to try to "match" up the girls whereas if I were to have both removed, I could start with an even playing ground.
I guess what I'm looking for from you, my newest allies, are replies on whether or not you chose to have both breasts removed for symmetry/ease of life/ease of mind? If so, do you regret that decision and wish you had kept the non-diseased breast? Also, in trying to picture my torso post-surgery and recovery, I can't help but wonder if it would be any more/less emotionally traumatic to see the two scars versus seeing one scar and the one breast that I've had all along. Not sure I want to live lop-sided.
Thank you in advance for any support/advice you can offer me.
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EDITED 08/27/2014 - to correct info on my original cancer.
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stasia2, My suggestion would be for you to go back on this thread two or three pages because several members weighed in on how they felt about, and why they chose, either flat or recon, Mx or BMx. As one who opted for lumpectomy and had no recurence, I have no firsthand exp[erience, but I can see the plus side and the minus side of both choices. This is why it becomes so individual.
I am confused by what you wrote about your first cancer. I don't think they give chemo for DCIS, and DCIS is always referred to as Stage 0, so perhaps your first cancer did have invasion present. That is all beside the point now, tho'. What I would mention is that some protocols and treatments have changed over the past 16 years. I don't know if the HER2 receptor was even discovered back then, but maybe you had that factor rather than estrogen fueling your cancer. I am not sure what you mean by "triple negative test results?"
I know you cannot have radiation again, but is a second lumpectomy, maybe with Herceptin (HER2 blocker, if you do have that factor) even a choice? If you do chose uni-Mx, you might want to have reduction on the "good" side, to feel more in balance; and get a prosthetic of a size to match. How important is it to you to have a breast with feeling in it? You might want to still have one. With Bmx, the surgery/infection/complication risks double, but the pay off is you virtually remove the threat (like down to 2%) of BC ever coming back and some say the follow-up is easier. I don't know, we all seem to get screened and scanned, except if you still have boobs left, they'll get you in the mammo-squisher quite frequently.
You can watch for more replies and good luck weighing it out for yourself. Welcome to this thread!
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stasia, I don't understand your "triple negative" comment as far as getting a bilateral mast. I will answer that I got a bilat with no recon and am very pleased with my flat, almost invisible scar. I look slimmer and stand much better than I did with my heavy breast. It IS an adjustment when you first lose them as your belly will seem HUGE (like a toddlers') and you might despair. Hang in there, you will learn to stand properly and be able to adapt most of your current clothes to your new figure.
I think that one nipple staring back at me in the mirror would have freaked me out. This way, totally flat, I pretty much can ignore my chest all the time. Not wearing a bra ever again is a treat, as well!
Good luck in your decision and feel free to PM me if you have any personal questions - or ask them here as many women read but do not post. So your question is a great one for others.
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elimar posted while I was typing, too funny! But, I will add about feeling to the chest.....it actually feels VERY sensual for me to have a "bare" chest under silky soft clothing.....
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i cant tell you that, but maybe barbe can. she is one who is happy to be flat. There is a thread on here called rocking flatness like a bada$$ for women who have chosen no recon. i just know if i was going to have one off, i would for sure have the other off. and i do like to be extremely active, and even tho i am not back to the level i was pre- bc, there is no way i would want recon. i just would not want my muscles messed with. and i did love my breasts. not so much anymore. big help i am, huh? you had a good long run, sorry its back. they cant do another lumpy, even though its been so long since radiation?
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and i was typing then had to edit! i swear, your responses to stasia weren't there when i started! you two!
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If I had to have one off, I'd do both, too. So I did.
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I did bilat, no regrets.
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Stacia, welcome to this board, you will find a great group of women and good advice. I had two lumpectomies, one on each side, 11 years apart. After another biopsy which turned out to be negative, I decided to have a prophalactic mastectomy on both breasts. 2 years later I was diagnosed with my 3rd BC and am just finishing up radiation, you can have radiation more than once under the right circumstances, though not their first choice. It's true the risk is low after mastectomy, but not as low as we are led to believe, and I am a good example, but knowing what I know now I would still have done it. They do not do routine scans after BMX, my cautionary tale is, don't hesitate to ask for MRI's because it can come back, there are always microscopic cells that might be left behind. I don't say this to scare anyone, just to inform, I was so sure I was out of the woods, but here I am. It is such a personal decision, but I wish I would have opted for Bilateral MX13 years ago, but I didn't have a crystal ball. Best of luck with your decision. Hugs to you. Stephanie
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I had a Bmx as a prophylactic measure. It was a good decision as the path report showed there was trouble brewing. I did it because I did not want to worry about waiting for the other shoe to drop. Also, I felt like my treatment plan was based on a better foundation knowing what was going on in the second breast...not guessing or anticipating. The symmetry concern was secondary.
Best wishes on your decision! Go with your gut.
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Momine, I had stage 2 - it had progressed a ways before I went to see a dr.
Have to apologize for offending people with my "freakish" remark. My personal opinion, and not meant to be directed at anyone but me. I know that some think it's vain to have recon, but for me it's a necessary step to being back to myself again. I don't want people to look at me and see "breast cancer survivor" - I am more than my disease. This is my way of getting past the trauma and the drama, to the point where this is not the first topic of conversation someone brings up when they see me.
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I had a uni mast, lived that way for a year, then had the other breast removed and bilateral recon with much smaller foobs. For me, having one large breast was uncomfortable, physically, and having having mammograms on the remaining breast was emotionally difficult. The year between I used a prosthesis, which I found hot and uncomfortable at times, but nobody could tell which side was real and which was fake.
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My oldest grandson (4 in September) and I have discussed this a number of times. My DD is soft, large-breasted like I was and he loves to cuddle on her. Probably on any female. Around the new year he sat back on me, then sat back up and pressed down on my chest. I told him NaNa didn't have any breasts because she had to have them taken off (didn't want to say "sick" or "cancer" to confuse him at his young age). We both agreed that NaNa's boobies were gone (his word, boobies, not mine!). When his Mom looked at him in surprise, he said "I know what boobies are, Mommy!"Then last week while we were visiting and he climbed up and sat back, he did it again - a sit up, turn around and a chest pat down!!
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Kids can roll with whatever, in that beautiful, non-judgmental way.
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Calico59, How are you doing with the tissue expanders? I don't know if I could have borne that discomfort without out becoming a drug addict in the process. I had an internal radiation balloon placed in mine for a few days and just cried and took hydrocodone the whole time.
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Ladies, I am looking for some advice! My oldest daughter was diagnosed with Triple Neg BC in 2011 at the age of 30. I was diagnosed in Dec. 2013 with DCIS and IDC. My youngest daughter is 25 and just had a baby. Her OB/GYN wants her to stop nursing at 6 months and have a mammo, MRI, and Ultrasound. Of course insurance will cover none of this. First of all I don't think she should stop nursing to have this done. I would agree with stopping at one year but not sooner if she chooses to nurse for that long. Second, any ideas on how to go about looking for a study, grant, or something to help pay for these tests? Going to see my oncologist next week and I am going to ask him but I feel like they are looking at me like I am just looking for free advice, which I am! Neither one of us can afford what those tests would cost! I feel like we are chasing our tails here trying to find a way to get her checked since we have such a family history of this.
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elimar, thank you for your compassion! I am very uncomfortable and my pect muscles don't like to do much of anything strenuous these days. Keep telling myself that it will soon be over ... And then the PS office calls to say the pre-op appt must be changed ... So I try not to stress and lose myself in a book quite often.
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KLJ, from what I've read, they say mammo, MRI & ultrasound will not affect breast milk though it might affect the amount your daughter produces. Check with your insurance company - my insurance will pay for the DNA testing (BRAC? ) that would give you the info you need. Seems there would be a precedent, since 2 members of your family are already having problems. Hugs to you! Wish you luck.
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Thoughts just fly into my mind in random order, so let's see if I can make any sense here. My first thought was that your BC and your elder daughter's were not at all the same. If your younger daughter is having no symptoms and has not even had benign breast disease up to this point, I just do not see why she cannot wait until the one year point. I don't see the rush either.I'm sorry, KLJ, that I don't know organizations or social services that provide financial help. Others here have better knowledge of that. Is there not a way that the doctor could submit something to the insurance to have it o.k.ed, because your youngest does have two first-line relatives with BC now? That surely qualifies as elevated risk, even if it is not definitely hereditary. What I don't get is why the expensive MRI got thrown into the mix? Mammo is the standard; and dense (young) breasts would probably benefit from having US added to that, if necessary. If the MRI was simply to get a baseline, surely that can wait until your daughter has better coverage or symptoms call for one.
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KLJ, so sorry to hear your story, having had BC three times I worry so about my daughter. I would be very surprised, given your family history, that your daughter's insurance would not cover these tests, has she checked on this? Hugs to you and your girls. Calico, I did not have to go the expander route, I was able to have immediate recon with saline implants, but I do know the pain of the muscle being manipulated hang in there. Stephanie P.S. only 2 more rad treatments left!!!!!!!
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KLJ: if you look under the forum "financial issues" (something like that) there may be people over there who can direct you to helpful sources.
But it seems to be that having to primary relatives with BC that insurance would pay at least for mammo and US. MD should appeal to them for that. MRI may be trickier,,, would def have to do mammo and US first,,, and then petition to have MRI covered. And if daugher 2 is not having any symptoms, and daughter 1 was 30,, she is only 25, why can't she nurse as long as she wants and then have the tests? Maybe get 2nd opinion from another OB/GYN?
and heck,, ask MO for free advice. It's your daughter!! Ask! If they don't answer, well, you tried. Does Daughter 1 have same MO? Cuz if different, have her ask that one.
Congrats on new grandbaby! Boy, girl??
edit: look under the forum "employment, insurance and other financial" someone over there may be able to help out.
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KLJ, have you or your daughter had genetic testing? Considering your strong family history, I would at least think your younger daughter's doctor could get her in to see a genetic counselor and see what sort of testing would be covered by insurance. There are other gene mutations besides BRCA1&2 that can increase your risk of cancer. If you are identified as high risk, you have a better chance of getting screening covered. I know for me, my DCIS only showed up on an MRI, which I was getting because I was identified as high risk. Nothing showed up on either a mammogram or ultrasound. I don't know if you have checked out the FORCE website. It has a lot of info on genetic mutations and there are many young women with similar concerns that post there.
I agree that your daughter shouldn't stop nursing at 6 months if she doesn't want to.
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Wow, thank you ladies! Such quick responses. Let's see if I can answer these questions in order!
Calico59, my oldest daughter was tested for the BRAC (?) and was found to be negative. Her ins. covered it, mine wouldn't.
Elimar, I'm not sure why the MRI was thrown into the mix. He could have just been thinking out loud. Her ins. is denying all of it due to her age however, her doctor is appealing it since the standard of care calls for a baseline to be done 5 years earlier than the diagnosis age of a sibling. Which would put her at exactly the right age.
Glennie19, Daughter 1 and I have different MO's. (different states). Her MO is looking for a study that may want to watch and test them both but so far nothing that is within a reasonable distance has come up. I already have my list of questions for my MO. You're right, if he doesn't answer me nothing lost, nothing gained
New grandbaby is a boy! That makes 4 boys, which means I will probably never get that grand daughter! I will ask on the forum you suggested also! Thanks!3littlebirds, thanks. I will ck the FORCE. I know that there is someone out there that can point us in the right direction. I know that she is not going to give up nursing at 6 months unless she is told that it could be life threatening for her not to be tested. My tumor only showed up on an MRI as well. I forced the issue with my doctor after they found "something" suspicious in my rt. breast. Turned out to be nothing but the MRI showed a tumor back near the chest wall on the left side that wouldn't have shown on a mammo for a long time.
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3littlebirds, welcome! Maybe MRI is standard if you are high risk, then.
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Could be elimar! Adding that to my list of questions for next week! If anyone can think of anything else I should be asking throw it out there. She is going to my appt. with me so hopefully looking at that young face of a new mom will make him answer all of our questions! He is a nice man, just always in a hurry!0
