Lumpectomy Lounge....let's talk!
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Sandy, wish you could come too. Maybe next year. Won't you have run out of foreign travels by then? You seem to have hit so many this year (lucky you!!). I get my exercise just reading everything you're doing!
HUGS!
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Alice and Sloan: I'd love nothing more than a road trip with you to see Peggy and the Northwest! Unfortunately, I just can't do it late September/early October, or really any time this fall. But don't feel too sorry for me...umm....the main reason I can't do it is that hubby and I have a three week (!) trip planned to Hawaii, leaving mid-September. So I will be waving to you from the Big Island and Maui...
Hubby and I were married on the Big Island in October, and we try to spend milestone anniversaries there. We did three weeks for our tenth. Our fifteen was last year, but I was in the midst of chemo on my anniversary so we stayed close to home and didn't have much of a celebration. When I was asked to present at a conference in Maui the first week of October this year I knew we had to turn this into our late fifteenth/early sixteenth trip (Our actual anniversary is the end of October). So, work is actually paying my airfare and a few days of hotel on Maui, and the rest of the time will just be fun on our own, with a bit of scuba in the mix! Can't wait.
Hoping I can do a road trip next fall...and that I get to see the two of you before then. I will be back down in Bakersfield the last weekend in August.
Hugs to all
Octogirl
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Sue, I love the family room boob job. Hilarious!
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Sue, I just love your definition of "playing golf"!!! Using that, I'm thinking of all the sports I could say I "do." Golf, Tennis, hiking, etc.! It sounds so very civilized and one doesn't even sweat! Love it lol.
Molly, glad the drain is out, but hope it's not too tiring for you to return to work. I was talking to my younger sister yesterday and we were saying how lucky I am not to have to work during all this. I admire those who still get up everyday and go to work or raise children and maintain a household. Speaking of which, my housekeeper gets here in an hour so I better get going. I find after 3 hip replacements, knee replacement, and foot reconstruction, I need help getting down to do floors etc.! Getting older is not for sissies!
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Octogirl, Wow! Hawaii is much more exciting than Spokane - guaranteed. That trip sounds wonderful and lucky you that work is paying for the trip - YES!! Next year is just fine.
Dara, like you, I don't know how the ladies with young children cope. It was hard enough caring for DH.
HUGS!!
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B"H
How is everyone doing?
Maybe someone here can give me some advice.... I received the pathology from my surgery today. Good news is that the margins are cancer-free, and that the tumor even though not small 3.2 was smaller than originally thought. Too, the KI67 is much lower than the first biopsy (and they are not sure how that is possible, went from 30% down to 8%) and i finally got a "grade" - 1. Problem though is that they removed 3 nodes during the surgery, and one of them had cancer in it. Saw the MO today, his "theory" is that all my factors taken into account - chemo would only change my prognosis by 1%. and he thought the best thing would be for me have a lymph-node dissection and have mnore nodes removed to be tested because is there are more nodes involved the more reasonable it would be to do chemo (besides the rradiation and hormonal treatments).
Has anyone been in a similar situation? To me it seems crazy to do more surgery just to discover if more nodes are involved. Has anyone here skipped chemo even though nodes were involved - does radiation destroy cancerous cells in nodes anyways?
thanks - hope everyone is doing well... the difficult thing here really is that everytime you reach what you were hoping was some kind of "final line" only to discover there are more questions and decisions to be made and fears to cope with.....
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ThereIsNoDespair, welcome! While waiting for answers to your very difficult questions, would you please update your profile with all your information and make it public? That helps us so much. We can't remember everyone's particulars and that information reminds us. Good luck making your decisions!
HUGS!
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B"H
will do and thanks for your kind words.... they go a very long way
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ThereIsNoDespair, Perfect! You might include your surgery information, too. Every item has to be okay'd to make public. It is challenging.
HUGS!
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thereisnodespair, welcome club no one wants to join, but we are so glad you found us. This forum has been a lifesaver for all of us, and this Lumpectomy Lounge has the very BEST group of women to help support each other!
Maybe I misunderstood your numbers, but with the fact that your tumor is over 3 cm, and you have a positive lymph node it surprises me that your team is not recommending chemo. My MO said that just a few years ago, any tumor over 1 cm meant automatic chemo. Now with additional tests, drs can fine-tune the dx to tailor it to the specific genes of each tumor. Is you surgeon also send pathology in for Oncotype testing? That will give you additional info regarding your risk factor for recurrence. My tumor was 1.5 cm and I was listed as Stage 1. I've since learned that many cancer specialists are placing greater emphasis on the grade rather than stage of the tumor as it tell us how aggressive those cancer cells are. While y numbers are 1.5 cm, Stage 1A, Grade 2/3. My onco test was low intermediate, and then a second genome test put me at High Risk, so here I am doing 4 rounds of chemo.
PLEASE, get a second opinion, and ask your team about additional testing. Just the fact that 1 node had cancer would warrant additional testing for me. Good luck! Dara
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thereisnodespair, I would not want any more nodes removed because of the possibility of lymphedema. Can you ask to get an Oncotype score? That would be my deciding factor in whether or not to do chemo. Your MO sounds "old school" to me, where they want to remove all the nodes if one has cancer cells. I believe that is not recommended very often any more because of lymphedema. Many MOs would recommend chemo instead of ALND, especially considering the size of your tumor. But if your Oncotype score is low you may be able to safely skip chemo. I would definitely be looking for a second opinion at a major breast cancer place. Originally my local MO recommended against chemo but my Onco score of 26 convinced me to do it, and the second opinion expert at UCSF agreed with me. I've just gotten done with 4 cycles of TC. It wasn't all that bad, the time flew by, and now I have so much more peace of mind about my prognosis because I've done all I can do.
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B"H Wowwwwww you girls are the greatest - responding so quickly and fully..... thanks so much for "hearing" my fears... REALLY!.... i think your advice is excellent - i have already heard that it is old school to think of an additional surgery. and the truth is i "accept" that i may well have to do chemo - its certainly nothing i look forward to but i do want to look forward to being well again so anything that must be done.... thanks so much for the input, really really solid advice and i think i must get a second opinion on it all.
the best to all of you - "people" just can't understand all we have to go through, it is amazing to have a place like this where we know and can share and dream together.....
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thereisnodepair, i live that you honor the holy name of the Most High in your writing. I am not Jewish, but i wish you peace and long life. Shalom.
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ThereIsNoDespair, this IS the greatest group. We all "get it." Where are you located? We probably have BCO gals near you and meeting up is a wonderful experience. We don't have to explain anything. We understand the moods, treatments and all the various things associated with BC. I do think that if I'd had one positive node I'd have strongly considered chemo. Like the others, not sure about take more nodes. Of course, sometimes it is necessary. Definitely recommend the Oncotype test if you can get it. Another piece in the puzzle called breast cancer treatment which seems to be more art than science.
HUGS!
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B"H
mustlovepoodles: wow!!!!! i thank you. truly. i don't even know what to say, just thank you. it would be a perfect world if we knew how to respect eachother. and that is way above and beyond managing cancer.
thank you DaraB, moondust and PontiacPeggy.... you are very kind and wise with your words and advice. and i have to remind myself that you all too (unfortunetly) are going through all this too.... and i truly wish you the best.... thank you all so much! it was a hard day today and you - strangers.... - made all the differnce in the world!
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ThereIsNoDespair, that's what we're here for. To listen, inform and help everyone of us get through treatments and cope with living with BC. We'll listen to your rants and wipe your tears. We understand. And we all have bad/hard days. It does get better.
HUGS!
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Thereisnodespair - I agree with the others: get the oncotest and not more nodes removed. I started chemo, finished 3, and then quit chemo when I found out my oncotest score was 12. While your mass was 3 cm, it is grade 1. What were your Er and Pr %? The higher % ER+ and PR+ the better, but they all respond really well to the meds. There are many women with positive nodes who don't do chemo. The grade 1 and Er+ Pr+ Her- works in your favor for no chemo, and the size and % PR is what the oncotest will compare with tbe research to see if you need chemo. I had to demand the oncotest. I think midy insurance companies in the US cover it now. Are you US, Canada, or Australia? Good luck! We're here for you!
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Hi everybody, I've been away from the boards for a while now and couldn't begin to acknowledge everyone individually -- I've read back a few pages, but holy smokes, it's hard to keep up with this bunch! I'm certainly going to keep those who are going through treatment or through loss in my thoughts. I also see there's fun stuff on the horizon for a few of you - road trips! Ah, sounds like so much fun! Glad to see you've settled in, Peggy, and have company to look forward to!
My mom's move is almost here - honestly, I can't believe how stressful it's been all summer, for all of us. Imagine a 92 year micro-managing every. single. detail. while also being very stubborn all along the way, haha. She's been her own worst enemy, that's for sure. I'm hanging by a thread, let me tell you, and drinking a lot wine with no apologies
I'm home now for a few days as my younger daughter is having her wisdom teeth extracted tomorrow and then on Friday I go for my first Zometa infusion. I know flu-like symptoms are common for two or three days following, starting about 12 hours post-infusion, so I've blocked off the weekend, and my husband and older daughter will be nurse maids to the 'puffy-faced one' and me
We can both 'take to our beds' and whine together. I'm very curious to see how the Zometa goes; from what I understand, side effects are most pronounced after the first infusion and then not a big deal in subsequent ones.... I'll be have one every six months, so no I'm not too concerned about it, just curious as what to really expect.If anybody else on here has done Zometa and has any pearls of wisdom, I would love to hear them (I'm aware of the importance of being very, very hydrated before, during and after), but I don't see a lot of Zometa discussion on the boards except from people who are stage 4 and are treating bone mets. It's a preventative treatment for me - keep the old bones strong (as related to the AI) and to prevent bone mets/recurrence. Anyway, I do have a pharmacy teaching session between the bloodwork and the infusion on Friday, so they'll fill me in on what's what, but it's always good to hear from those who've actually done it.
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I’m opting for Zometa myself. Tired of playing insurance company--Medicare Part D--games over Prolia coverage and I am now officially in the “donut hole,” hence the need to get a “treatment” covered fully by Part B rather than shell out $5K for a totally non-formulary Prolia “drug” (as an injection is classified). I’m now paying full price for half my meds now and up to $100/mo for some others. The hole Prolia would blow in my bank account would make me feel sicker than the post-Zometa pseudo-flu.
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Well good evening ladies! I hope today finds you all well. I had my second opinion appointment today and it went very well. I really liked the new MO. He took the time to answer all my questions and left the decisions up to me. I feel very good about the new treatment plan. I will be having 4 courses of chemo and then radiation, I'll be having my port put in early next week. (Does it hurt??) I'm more nervous about the port than the chemo! I just feel I need to do everything I can to be around until this baby is at least out of college. I don't want to look back later, when it has returned and say man, I wish I'd done that chemo. I know it's probably going to be pretty rough, but I'm also pretty tough, so I've got this! What choice do I have right?
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Sandy, I'll let you know how I make out with my infusion, if you like. Do you know when yours will be? Will be good for both of us to get this first one over with.
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Still waiting to hear, Grazy. I think my MO is on vacation or at a conference. thereisnodespair, I echo Sloan’s advice. She is far calmer and more gracious than I’d have been had I begun chemo and lost my hair and then found out it was unnecessary. If only 1 of 3 nodes removed were involved, and the removal was by SNB (only the nodes that “lit up” or were attached to them were removed), then there was no further detectable involvement despite your tumor’s size, and no need to check more nodes. Get the OncotypeDX test first--it’s covered in the U.S. & U.K. and perhaps CA, though I hear not AU or NZ’s universal systems. Just as Alice's (Moondust) tumor was an outlier--stage IA, grade 1, but Oncotype 26, so might yours--despite its intermediate size, still grade 1, only one node involved, but quite possibly Oncotype 17 or below and chemo wouldn’t help--1% improvement is not good enough to warrant the discomforts & dangers. If your score is 18 or above, perhaps the tumor’s size may have had it spread to the non-sentinels, but I doubt it--and if an ALND is done, they’d go level-by-level: if no nodes found in the first level they won’t need to dig deeper and increase your LE risk.
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Grazy, welcome back! Your mom sounds like a hoot! Of course I'm sure it's funnier from a distance rather than when you're right smack in the center of things. I guess I think anyone who makes it to 93 and has their faculties has the right to be a bit controlling! Hope your infusion and your daughter's surgery goes well. Hunker down and watch Netflix!
Kacey, I know everyone reacts differently, and yes, there are quite a few side effects that CAN happen, but just don't assume that you'll have them all. I had my first TC last week. The first 7 days weren't great, but certainly doable, especially to guarantee that every last damn cancer cell that can be killed is taken care of. Just take it one day at a time. and come here and the chemo thread and we can all commiserate with you. So glad you liked the second MO.
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Grazy, Welcome back. Sounds like you are ready to pull your hair out and throttle your dear mother. I get that totally! Are you glad that we can buy really BIG bottles of wine??? Much better than any pill out there! Good luck with your Zometa.
Kacey, glad you really like your new MO. That helps so much. When your trust your MO your treatment decisions are easier, I think. Not having had chemo I can't speak to having a port put in but I suspect I'd be like you and dread that more than the chemo. You're going to be around lots longer than getting baby out of college!
Gang, I think I'm ready to....DATE! Now how in the heck do I do that? I'm not a church person. Do I go to a dating website? If so, which one? This is scary. I haven't dated in over 50 years!!! HELP!!!!
HUGS!
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That's great Peggy! I'd do a dating website because you can meet so many people for a quick cup of coffee, and within 5 minutes, you'll know if you want to spend more time with that person. I don't know any websites, but I'd also look into Meet-Up groups in your area (meet up .com ) where people do things based on interests, like a hiking meet up or whatever. Both married and single people are in Meet Up groups, but married people have single friends!
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Katzpjays, the picture is hilarious! Jo
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Peggy, I think I might have just yelped out loud at your dating post! Whew! That's so exciting - I'm going to have be on this board regularly again just to follow any escapades you might have!
Katz, I had to go back and look at that photo, omg, fantastic.
Glad to see you're doing pretty well, Dara - you have a wonderful attitude!
Hi to the new folks!
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Sloan good ideas! I know only one person who used a dating website (Match.com maybe?) and she hit the jackpot. Her DAUGHTERS signed her up, did her profile and took care of all the details though she was ready to date. She's been with her guy for about 10 years now and they are extremely happy. I'd like that. Haven't heard of meetup.com. I'll check it out.
Grazy, escapades at 71? I'm in! I'll definitely keep you all posted. You have been my lifeline for the past 2 years. I know I would not have made it without all of you. So only fair you get to share any fun I might find!
HUGS!
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Peggy - I would go with Match.com. I actually have 2 friends (both in their 60's) who met their spouses on Match. You have to sort through some toads, but there are some very nice people on there
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Katzpjays, I was thinking that might be the best place for me to try. It is a huge step for me mentally. The dating scene has always been difficult for me. And after so long? I'm quite scared. If you all will hold my hand and push me onward, I'll give it a try (I said shaking in my tennis shoes).
HUGS!!
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