Lumpectomy Lounge....let's talk!

BT828

Thanks MLP, I had never heard of those mutations before BCO. My mom died @ 35. (I was 10) & my sister died @ 31, both ovarian cancer. Both sides of my family have extensive CA, colon, breast, lung as well. I think I'll address the issue of further testing when I see MO in June. I appreciate your in-depth explanation, thanks again.

Molly50

mlp, even with my risk of a new breast cancer being up to 30% MO went by the oncotype Dx to determine no chemo. I am getting a second opinion but chances are the no chemo will stick. Because of my mutation though my husband and I decided that I will have a prophylactic mx sometime in the next year. I need to find a new PCP to order more frequent colonoscopies.

Molly50

BT828 only certain Labs do the full range of testing. My cancer center used Myriad Labs.

MaggieCat

Thought I'd add a couple of thoughts to the genetic testing discussion.... I've read of the oncotype test, when score comes in the middle, being followed by a mammaprint test.

For me, much like you both, multiple cancers in the family, I worked first with a genetics person and was tested by the BreastNext panel (germline). There were somatic alterations that I was interested in being Her2+++. So I then had the tumor tissue tested with Foundation One. So glad I did both. I answered the one Foundation Medicine question for follow-up with the BreastNext panel.

BT828

Thank you Molly. My BRCA was done at Myriad in 2013. I think our cancer institute uses them frequently.

I hope your 2nd opinion results come soon, please keep us posted

PontiacPeggy

Poodles, you will never know how much your words meant to me AND my sons. We were feeling like the only people in the world who just wanted it all over and feeling like we were terrible people. I don't want DH to suffer. He will not get well. And we hate this limbo we are in. Our lives are definitely on hold. I'm glad the boys are here and got to talk to their dad before he became non-responsive (last Friday). Anyway, we now know we are rather normal. And we totally get what your brother said to your dad - not tactful but definitely true. THANK YOU!!!!!!

HUGS!!!

PontiacPeggy

Molly, love that picture of you and DS with the HP train. My heart goes out to you and yours - definitely not an easy time for you. Just keep loving him!

HUGS!

Nash54

Peggy....I know you've seen DH suffer enough and have accepted the inevitable. That doesn't mean your terrible person you are just a realist. That's what I love about you.  🙏🏻 for you and your family 

octogirl

Peggy, lots of love and HUGS from all of us!!!

Octogirl

mustlovepoodles

It's okay Peggy. I well remember having those conversations with my siblings when dad was dying. It seemed like the process took forever and each one handled it differently. My sister #2 and I stayed with dad as much as possible, tag-teaming all the way through to the end. Brother plowed himself into work and taking care of dad's animals. He called every day, but he couldn't bring himself to come to the hospital. Sister #3 went camping into the wilds of Yosemite National Park and said she'd check on us in 2 weeks. Sister #4 "forgot".

Everyone handles this stuff differently. I'm glad I was able to be with my father all the way to the end, but I didn't do it "more right" than my siblings. Everyone has their part to play in the delicate dance. All we can do is try to be kind to each other and accept that grief is messy; it causes normally sane people to do and say seriously insane things.

plumster1

Hi all-

I have been keeping up on everything everyone is up too but have not had much time to comment. Couple things:

Mlp- first off sorry about the Seroma that keeps on giving. That must be frustrating. In regards to your oncotype score being 23 right in the intermediate zone..I saw announced on another thread that the TAILORX trial results are going to be presented September 28th ( I think that was the date ). If you are not familiar with that clinical trial. It basically took patients in the dreaded oncotype middle zone and tried to figure out who benefits from chemo. Not sure if you'll have to make your decision before that date. But it might be worth it to ask your MO.

Peggy- I know how draining the hospice watch is. 15 years ago, I was called in for my dad's hospice. I had a 4 month old baby. He wanted to be at home. So my mother, sister and I took care of him (plus my 4 month old) It lasted a little less than 3 weeks and it was so hard. Physically ( we were not nurses and not use to some things we had to do) and mentally. It was such a conflicting feeling to want things to end. I still can remember the feelings. You and your boys are in my prayers!

Molly- loved the HP photo. I am a huge fan too. Read the books multiple times. What a great birthday!

Everyone else I missed sorry. But you are all in my thoughts.

Molly50

Peggy, my mom has Alzheimers and has been at the stage of not knowing anyone, can't walk or talk with no quality of life yet still manages to eat so she hangs on. It is sad to see her like this and honestly my sister and I both wish she would let go. It sounds awful but my mom left us a long time ago. Don't feel bad that you would like your DH to go on to a better place since he's not coming back to you. Just spend some time talking to him and playing music when you can. Sending hugs.

PontiacPeggy

Everyone, I am so glad I posted my feelings here. No one seems to have "end of life" conversations with their friends so you don't realize how normal you are when you wish that the "deathwatch" was over.

Poodles, good to point out that everyone handles this tense time in different ways.

Plumster I really did want to have DH at home and I am so glad that he's not. I cared for DH for 4 years at home and the care he needs now is beyond what I could do even if I had 24/7 staff. And there would be no break. It must have been terribly hard for you. An acquaintance in the neighborhood is doing what you did. Alzheimers playing a role. And they are older than I am.

Molly, Alzheimers is such a cruel disease. Way back in the 1980s the husband of a friend of my grandmother's had dementia (most likely Alzheimers). She put him in a nursing and then she went to Florida for the winter as she had always done. We all thought she was terrible. He didn't know her and was mean to her. How my thinking has changed. Now I know she did the right thing. You have so much going on I don't know how you cope. You are amazing!

HUGS and many thanks to all of you for sharing.

Horsegirl

Prayers & hugs Peggy. You are oh so normal. Long goodbyes are like a chronic crisis. Allow yourself to adjust so that your response keeps you healthy. It's about you and your sons at this point.

My mom died of Alzheimers last year after 15 years with the disease. It was both awful and beautiful. There were times I was frustrated with lack of support from other familiy members, and even worse, feeling guilty for what I didn't do. But all in all, I came out of it neither wiped out or depressed because I followed what gave me peace.

PontiacPeggy

Horsegirl, that's what we seem to be doing. I'm grateful for the kind words. Alzheimer's is so cruel - the body goes on far too long after the mind and soul of the person has departed. You obviously, figured out how to cope and make it all work for you. I think I've arrived at that place too. You can do nothing for the person who is dying except give them love, peace and permission to go when they are ready. Doesn't seem like enough at times.

MustLovePoodles, both sons were so thankful for your comments. I think they were both troubled (well, me too) but what we were feeling and that we weren't "normal." Knowing that they WERE normal was a huge relief for them and they both said so after I read what you posted to them.

HUGS!!!

dtad

Peggy, I hope things at home are better. With all due respect DIM is a natural supplement made of cruciferous vegetables. Many studies have shown that it lowers the bad estrogen that fuels the breast cancer but not the good estrogen that we all need. We all need to make informed decisions about our treatment. Happy you are doing well on the Arimidex.....

octogirl

Peggy, I am glad others are able to affirm that your feelings are normal. It is an awful time, I know.

My father is 91 and has worsening dementia, along with other health problems (heart, etc) that one might expect in a person of that age. About five months ago my stepmom made the decision to put him into assisted living/dementia care. My sisters and I wished she had done it six months earlier, to be honest: she really couldn't care for him at home without totally exhausting herself, although she tried. But she felt terribly guilty, like she was abandoning them. They had a very long and good marriage.

It hasn't been easy: he doesn't always know her, he turned mean for a while (in fact at some points he was downright abusive, which was another reason we all felt she shouldn't be trying to care for him at home), and he hated the dementia care home even though honestly, objectively, we all found it hard to imagine a better place (beautiful outdoor spaces and gardens, including vegetable gardens that residents can help care for or pick from and that the staff use to make tasty home-cooked meals, private comfortable room, small, high staff ratio, caring staff, great location only three miles from stepmom's house...). But he's adjusted. Last time I was there he didn't really recognize me (he asked me if I was a relative. I told him I was his daughter. His response, 'you aren't my daughter. However, you might be my mother. you certainly are acting like a mother!' (might I have been fussing over him too much? :-))

And stepmom is FINALLY doing things for herself. Including things she really needed to do such as take care of her own health issues. But also traveling and visiting friends, which are both passions of hers. She still feels guilty and like she isn't normal, but less so...and my sisters and I are rooting her on. On Labor Day she took him to the local picnic and he was able to greet local politicians (my father was in public office himself). She is so much healthier and happier, and he is no less happy.

obviously, a happier situation than yours, although it really isn't all that happy. I've also been on the end of life watch, with my Mom, who died of lung cancer, and in a lot of pain, and I also learned from that experience that there really is no normal. I found being with her every minute to be so, so stressful, so I was there when I could be, but took breaks as well. My stepdad (her husband) would come to the nursing facility where she was, but he wouldn't stay by her side: he was a musician, and he'd go play piano and sing for other more mobile residents. He ended up playing there twice a week for the rest of his life, long after she died!

Anyway, I know I am rambling, but yes, of course you are normal,and so are your sons. Tell them we are all with them, and we know it is hard, but to hang in there and to take care of yourselves so that you can continue to give to your hubby, as you have always. WE LOVE YOU!!! HUGS!!!!!

Octogirl

Molly50

Wow, we have all been through a lot of life and death experiences. What a blessing to know you ladies.

Outrunning

Octogirl From the family member of a person who did NOT do what your step-mother did, please tell her I applaud her. In my MIL's family one of her bothers got Alzheimer's really young (before my time in the family but in his 50s I think). The family basically shunned his wife for putting him in a home and going on with her life. So when my FIL got sick MIL was determine to keep him at home as long as possible. SHE couldn't do what her SIL had done.

We went through FIL being mean. They live several states away so we didn't see them often, but looked forward to staying with them. One Xmas visit he became angry and threw us out of the house. We had to go stay with SIL. We never stayed with them again. He got worse and worse and yet she kept him at home. We'd visit but my kids missed quality time with grandma. We didn't stay there so they missed out on the early morning and late night times with Grandma. MIL could never go anywhere for long with my children because she only had a few hours a week of care so she could leave the house. Of course visiting us was out of the question.

I felt horrible but I looked forward to the day FIL was so sick he HAD to be in a home, or he died, so that my children could have more quality time with their grandmother. Especially since my own mother died when my older was 1. I'd hoped she'd come visit and stay with us awhile. Or even come on vacation with us.

In the end, FIL only went to a home when Mom got too sick to take care of him. MIL's breast cancer returned 8 years after her BMX. It quickly went to her liver. She died 15 months before FIL. My kids don't ever remember grandpa being able to talk or really interact with them. And because she was unwilling to let others care of him even when he didn't really know who anyone was, my children have few memories of their grandmother either.

Think of me today. I see the BS at 11:15. Hopefully the close margin isn't going to change the expected treatment plan for something more agressive.

octogirl

an excellent point about the relationships with the third generation, Outrunning! My kids did have lots of time with their grandparents (not as much with my Mom though, given that she died relatively young :-( ) given everyone's age...but it does still make a huge difference to be able to have quality time. My son (32 years old) has always been particularly close to my father, his Grandpa. He can't see him very much now because he lives on the other coast. However, when he was out for a visit this summer, he went to see Grandpa, and reported back that while he wasn't sure Grandpa fully recognized him, he had a very nice time sitting in the gardens with him, chatting and reading the newspaper and then watching a baseball game on TV. I know son appreciated the opportunity and it sounded like they both enjoyed the time together.

In your pocket for the doc visit today! Hugs!

Octogirl

Molly50

You all are going to make me cry. I miss my parents even though mom is still alive. I miss my oldest sister too. She passed from early onset Alzheimers at the age of 56. Life is challenging, isn't it?

Molly50

Outrunning, praying for your visit today.

mustlovepoodles

Molly, life is challenging in so many ways. Years ago, I worked as a telephone nurse for a children's hospital. Parents would call me with questions about their children--this one has a fever, that one fell out of a tree, this one has a croupy cough, that one needs stitches. Some nights I felt like lining them all up in a conference call so I didn't have to say the same information over and over, especially during vomiting season, LOL.

I got this job right after my youngest was born. He was obviously profoundly disabled and we were going through tons of testing. He was so fragile and I was so sleep deprived. At first I was totally annoyed with these parents who called, all hysterical, to complain about their 2 year old who had an earache or the 8 year old who had vomited twice. How dare they complain, when I was going through the worst thing that could ever happen to me?

Then one day it dawned on me--this isn't a race. This isn't a competition. Nobody gets a gold star at the end for being the best. Sure, it can be a little annoying when you hear a parent getting overly emotional about a minor thing, but they have a right to do so. Perhaps in their world this IS the worst thing that has happened to them so far, and they DON'T know how to deal with it. They wouldn't have called me if they knew what to do, so I needed to get down off my cross and help them without judgment.

And as they say, the truth will set you free. I suddenly realized that everyone is going through something. Even though my life can be a challenge, I look at others and see that they also are dealing with challenges. My brother once told me he could never deal with a mentally handicapped child. And yet, he has a child with a serious mental illness and another with autism. We each play the cards we are dealt.

Incidentally, my son did finally get a diagnosis (at 2 years old) and it wasn't the end of the world. In fact, we went on to have other crises that were more serious, but by then we had learned to roll with the punches. Having a severely handicapped child just made us ready to deal with everything else, so thank you Christian!

Molly50

I totally agree with you, MLP. My DS opened my eyes and heart to others without comparing our situation to theirs. I have met more wonderful people through Wyatt and he has blessed us with patience which I seriously lacked before. I always tell people you just rise to the hand life deals you.

Outrunning

Well send mustlovepoodles. Hugs to you all.

Good report I think. They decided the margin was fine. No more surgery. At least not this time. YAY.

Right: not even found to have the atypia which took me to the surgeon. Apparently the biopsy had gotten it all.

Left: I had 6 tiny tumors. The largest is what the surgeon felt and was biopsied 4mm. The others were all even smaller. 3mm 3x2mm and <1mm. Apparently my BS's colleagues gave her a big kudos for catching this. And am I ever grateful she did.

Now I see the RO on the 24 about radiation and MO on the 29th about tamoxifen.

bluedog

Kudos to all for handling very challenging circumstances. Sending special support your way, Peggy.

Had my lumpectomy this morning, and all went well. No sign of cancer in sentinel node, so BS stopped there. Right now, I'm enjoying a Vicodin buzz and feeling grateful for good news.

Outrunning

Blue dog/Lisa glad you are home and doing well. We must be practically neighbors. I'm in Checy Chase DC

Do you mind if I ask what hospital/surgeon? I'm at Sibley. With Magnant.

bluedog

outrunning, thanks. Surgery was with Pamela Wright at Suburban, but I think I'll do rads at Sibley with Jean Wright. Heard her speak at a BC symposium last weekend and really liked her. Magnant moderated -- liked her too!

Molly50

Happy to hear you are doing well, bluedog! Now get some rest and don't overdo things.

Ringelle

Hi all! I've been trying to keep tabs on what's going on especially those of you who are going through difficulties and infections with recovery. Peggy - I keep you in my thoughts and prayers daily. I have been swamped with the new school year starting and I'm hoping that I'm finally starting to come up for air. My stupid seroma filled back up again but I'm giving it some time to see if it will subside more on its own as I know it's a touchy subject with my BS.

A whole bunch of emotions came flooding back today. A friend has told me today that she is headed for a biopsy because of microcalcifications on her mammo. Apparently they had seen something suspicious 6 months ago and had her come back. Apparently, whatever they saw has increased and they told her this time they were microcalcifications. She has watched my journey over the past 5 months and is worried. She's also been on estrogen for the past 10 years following a hysterectomy and she's really afraid she's got BC. Obviously, I'm nervous for her but it's also ripped some scabs off of my healing as I'm remembering how it felt to wait on the biopsy and then the results and well . . . you all know the routine.

Question . . . her doctor has sent her for a biopsy. Her paperwork says sterotactic core biopsy but her doctor is sending her to a BS and said she wanted a BS to do it, not a radiologist. She also said that when she went in for her mammo - it took like 2 hours to get pictures, more pictures, ultrasound pics and more ultra sound pics. Did any of you experience anything like this? At this stage of her process, I'm trying to keep her off of the internet and boards but I thought I'd see what you all know!