Lumpectomy Lounge....let's talk!
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Peggy, you're absolutely right to be honest with DH. He was probably feeling a bit scared and was asking for your reassurance. I can't imagine the emotions of someone seeing the end of this journey. My DS has been on hospice for two years. Ironically hospice has helped extend his life in many ways. So many times we nearly lost him and this past February he was sent home from the pediatric ICU to die. DS thought otherwise so we've lived with death hovering over us for a long time. I really think will power and God are the final decision makers in these particular instances. I do hope you feel our thoughts, hugs and prayers every moment. You're never far from my thoughts.
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MLP: sure understanding your sighs. I think that dealing with the perpetual waiting is much more difficult than the diagnosis. My husband describes the journey as turning the pages in a suspense novel - there always seems to be a plot twist around the corner
I start rads next week. Been having some minor problems (skin reactions, mouth sores) - not sure if Herceptin side effects or stress or just getting sick. Intense 4 weeks ahead with big work projects, home renovation, & new treatments. Potential stress trifecta! My prayer angels are busy, haha.
Peggy - thinking of you often. HUGS for your journey.
Welcome, Quirky! This is a safe, supportive place to learn, laugh, vent, and pass along your wisdom.
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MLP, do you know what the mutation of your Chek2 is? I had a long conversation with my BS yesterday about my genetic results. The truth is my particular mutation is rather grim especially since I already have bc. Basically I am at a 30% risk of developing a new bc. So vigilance is key. Also my mutation carries a risk of several other cancers including colon, melanoma, thyroid etc so my children and my niece are going to get tested as well. In fact I want my 32 year old son to have a colonoscopy and my 22 year old daughter is being referred to an oncologist. They all need to have the genetic testing done.
My oncotype dx was low, just 13. BS said I need to see MO next week to see if he wants to do chemo anyway. I see BS again in a month and PS next week. She said I will definitely be doing rads and hormone suppression therapy. She also said any changes in my right breast means mx. No fooling around. She doesn't want to even consider prophylactic at this point because my body has been through two surgeries and I need to get on with tx.
It's all pretty depressing honestly.
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"Rather depleted" has to be one of the most understated understatements I've ever heard--up there with a family member known for zir tendency to understatement saying "I was rather perturbed to hear that my cancer had metastasized."
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Oh, Molly! I didn't know you had a DS in hospice. That must be so difficult. My DH is in poor health and we live with the knowledge that he is one bad bout of flu or pneumonia away from the end. I can't imagine how much harder that would be with a child.
I looked at my papers again. The Chek2 mutation is p.R117G. I don't think there's much research out there on that particular mutation, but it is said to confer a 2 fold risk of breast cancer and colon cancer, for sure. And then, of course, there is the PALB2 mutation at work(p.W1038*) My genetics counselor estimates about a 40% lifetime risk for breast cancer and some lifetime risk for pancreatic cancer for me and any siblings or children who may also have the PALB2 mutation. She was unable to estimate risk for someone with both mutations. Which is chilling because I have many 1st & 2nd degree relatives on both sides of the family who had breast, colon, pancreatic, thyroid, lymphoma, lung, or combinations of those cancers.
Deep stuff...
Headed to the BS this afternoon for my post-op and seroma evacuation. I now have 3 areas where the incision has opened, but at least I've been able to stem the tide so I'm not constantly wet.
After that visit, we're going to go pick up my handicapped son from his group home and take him for an overnight at a local hotel so he can go swimming in their indoor, heated pool. :-) He's like a 1 yr old--give him a pool, some pancakes, a little ice cream, and some cuddling and he's happy. Only problem is he is exactly a foot taller than me (6'3"~!)
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Hugs for you and your DH, MLP. My variant is 11009del. Very common in Northern Europe but rare otherwise. Not sure if it's my mom or my dad's family. I am not aware of cancer hx on either side.
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Molly, that's interesting. I am 2nd gen Welsh-American and my father's family came from England several generations ago. My family is made up of some really white people, LOL.
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my sweet boy0 -
mlp, I am 3rd generation Irish on my paternal grandmother side. The rest is pretty confusing due to some dead ends. I am thinking of using genetics like on Ancestry to determine my background.
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What a beautiful boy you have, Molly. He looks like an angel!
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Molly....so sweet...asleep on his ninja turtles pillow and looking so beautiful. Thanks for sharing the picture. How are you healing and feeling, btw? Been thinking about you. Hugs!
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Horsegirl, I should be starting my rads in 2 weeks (have not yet been given a date), so not far behind you! I meet with my new MO on Monday, but last week I had the CT sim and RO said I will have the HR-WBI tx. Do you know how many weeks of rads you'll have?
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Molly....what a precious picture of your son. He is indeed a beautiful boy.
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Thank you all, he us indeed an angel and a fighter. I am healing well considering I have not been able to rest. Incision looks good, drain should come out next week. I will start fills the following week. I see MO on Monday.
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You all have so much going on. I feel bad even complaining about a little LX.
But today I'm tired, over whelmed and grouchy. My DH dropped me and my son off for DS's check-up this morning and then a friend got us home. I came in and was thinking about starting some laundry but sat down and couldn't even move to get better pillows. Slept for a couple hours.
Nanny (share) came here with kids after school. My two plus 3 others. I just wanted them to all go away and leave me to be quiet. I was hoping I'd have house to myself until 6. Even now that the extra 3 kids are gone I can't take it. The least noise has me on edge.
I also can't keep my thoughts straight. Can barely think two sentences in a row. E.G. I think it took me an hour and a half at least to order bras. I don't own any without underwire except sports bars. Since my left side incision is right along where the wire would go I figured I'd better get some normal bras without a wire. It is going to be awhile before my usual ones are comfortable again. Plus you all have said no wire / cotton during radiations. I think the bra situation is going to be a challenge to my dressing. My clothes are mostly knit and fitted. It is so hard to tell ordering online what has sufficient padding to hold girls in shape and not show nipples since they photoshop out the nipples in the catalog. :PDH is out all evening at a gig. Thankfully rain moved his all day Saturday gig to Sunday. So at least I have one more day to heal. And some college students and alum from a group I volunteer with to come on Sunday.
I think I need to lay off the Oxycondone. It made me hyper yesterday and I think it is what is making me edgy today. Going to have to find a nice calm movie to watch with the kids tonight or something and get everyone to be quiet.
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What a beautiful boy! How precious of you to share him with us, Molly.
Sweetmamaj: I'm doing the short (Canadian) protocol - 16 treatments plus 4 boosts for a total of 4 weeks.0 -
Outrunning, I hurt badly after my Lx and alnd. Don't feel bad about venting.
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Hi Molly50....I did a DNA test thru Ancestry & am so glad I did. I would definitely encourage you to do it if you have interest. I've learned so much that I wouldn't have otherwise. It's been fun as well as informative!
Thinking about you all day, Peggy.....you're in my prayers.
Saw my ONC today for an annual on a prior primary CA, also followed up on the letrozole for this one. I got the "all ok!" on both & don't see her again till June unless I have issues..Yay!
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Molly- I loved the picture. So sweet of your son!!!0
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Thanks BT828, I think I will try the DNA on Ancestry! Congratulations on getting good news. Plumster1, thank you. He really is my sweetheart. I wish he was doing better.
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Outrunning, switching from underwires was tough for me, too. I've wore them for at least 30 years! After surgery, they were too uncomfortable for long days and I can't tolerate them at all after radiation. My favorite wireless bras are the Playtex Funtimer, which I bought on Amazon. Offers good support, nips won't show through, and the band doesn't roll up.
MLP, hope the BS found a solution that provided some relief from your seroma and leaking excisions.
Molly, your son is such a handsome young man.
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Speaking of bras my PS said no bras until maybe next week. Then I thought I will make an appointment with Nordstrom to be fitted with a mastectomy bra since I don't want to go back to work flat on one side. I had to take DS to have his gtube replaced yesterday and some woman kept staring at me on my flat side.
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Molly, as if all this BC stuff isn't enough to deal with already! That's hard. I'm afraid I may have been tempted to tell that woman she was staring at the wrong side, that the flat side was my "normal" & I had mastitis in the other, or maybe asked her which side she liked best....just to stop her in her tracks.
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Well, I'm back after a fun 24 hours with my DS. He's 20 years old now and although he is very sweet, he can be a handful, especially when I'm not at my best. But we had a lovely time with him playing in the pool and eating dinner at his favorite place, Piccadilly. We took him shopping at Walmart and he got to pick out some snacks to take home with him. He didn't want to leave us, but he did consent to go with his caregiver when she told him she was going to take him to the mall, LOL. Walking in the mall is just about his favorite thing in this world, besides ice cream.
My appt with the BS went well. They evacuated a LOT of seroma fluid. In fact when she touched the edge of my incision, the fluid came bursting out like a fountain! Needless to say, there was no point in trying to count the volume. Just mash, mash, mash my poor beat up breast to get as much out as possible. It was like a river, I swear, and it's still sloshing. My BS is concerned, obviously. We looked at the seroma on her ultrasound machine and it is HUGE. She feels that there is no way this thing is just going to magically dry up on its own, so she wants me to come in Tuesday to put a drain in. In the meantime, I will just express as much as I can every day before my shower to keep it relieved and hopefully avoid it pouring down my side when I'm away from home!
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MLP, ouch! Sorry about the seroma! Glad you had a good visit with DS.
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Molly-- Beautiful boy.
Peggy-- I'm glad your family is with you and that you have the support of the hospice.
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Everyone, you are all so wonderful dealing with everything. Just keep putting one foot ahead of the other (and putting both up for rest when you can get it!), it's all we can do! And it will work out, I'm sure!
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I had my LX in May. I've still got a hard spot where my tumor bed was, but still no pain anywhere and things seems to be healing up after RT. Still getting Herceptin every 3 weeks, so I still have my port in. Started on my hormonal treatment this month. Things are starting to get back to normal! It seems like it never will, and then it does! Weird!
Realizing I have/had Cancer... Sometimes I think I'm still in denial at some level, mostly because this all sometimes seems like a weird dream that I'm living but isn't quite real. Chemo was terrible and my hair is under an inch long, and I have scars, and I can talk about it (sometimes I'm in the TMI club, I'll admit it!... I posted IN DETAIL to hundreds of people who I barely know on Facebook, fergoshsakes!), but it still seems a bit unreal sometimes. Maybe we just aren't meant to really dwell on the fact that we had something in us that could kill us, just like it's too hard to dwell on our mortality in general for long periods of time (unless, like some of us here, mortality is hitting us in the face... but that, too will pass and life will go on whether we are ready or not)? And of course, everyone deals with stuff like this differently! That is as deep as I'm going to get.
Anyway, I'm pretty much back to living my life as it was before... maybe with a few more doctor appointments and meds, and maybe I'm being a bit lazy when I can... lying about pretending I need to still recover from everything when really, I can't use that excuse any more!
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My thoughts and good wishes and hugs go out to all of you!
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mlp - that seroma sounds awful! Hoping the drain gives you more comfort & healing. Hugs!
April - There's no wrong way to process that we've had cancer. Publicly, privately, whatever seems right. Our job is not to spare other people from the reality. Our job is to get well! What's going on in our minds is as important as what's going on in our bodies. Glad your getting back to some normal times now. I think this mess takes a long time to reconcile. I'm not there yet. Currently having some side effects, but a little thankful for them too...they remind me that there's a fight going on within me. And my snipers are winning!
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Thinking of sweet Peggy. These are tough times - transitions always are that way. I'm thinking about all of you, at different stages of dealing with this nasty disease.
We are day 11 of 15 (filming), working from 7:30 a.m. to about 2:00 a.m. every day (exhausting). It is wonderful to be so busy that I forget I have cancer. In many ways, it is like a vacation.
My re-excision is scheduled for September 24. I am looking forward to that day because it will be the end of my treatment. I am not a candidate for chemotherapy and I have declined radiation and arimidex. Instead, I am going to go full steam ahead, love every minute, crash into life the way I always have. Denial? Distrust of Big Pharma? Believing I can beat the odds? Who knows? However, I am very, very happy about my decision.
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Barbara, I can certainly understand your perspective on RT and hormonal therapy but for me I will do everything I am told will decrease my odds of recurrence because my disease was more widespread than originally thought and my genetic component is worrisome. I hate that I had to have a mastectomy but I deal with it. My oncotype Dx is low so likelihood of chemo is low thankfully. My DS has gracefully endured more treatment, pain and suffering than anyone I know. If he can fight so hard for life and still smile then so can I.
Peggy sending love to you. April, hooray for getting back to reality. That's where I hope to be in a few months.
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Peggy- thinking of you
April- I think we all have had feelings like you are expressing one way or another. Horse girl, I really liked how you put that in words about not sparing people and focusing on healing.
Barbara- everyone's journey is their own and I think we should feel confident in our treatment choices. So it sounds like you are all good.
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