Lumpectomy Lounge....let's talk!
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Is there a mobile app for this discussion board? So many times in the middle of the night I think of things I want to ask - but am too lazy to get out of bed to stumble in the office to turn on laptop and do it!
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KDTheatre, I don't know about that, but I never have problems reading stuff from here on my phone. One thing to keep in mind is that you can be logged in on only one device at a time. Works well on my tablet too.
Molly, I didn't understand that either. I think it is very hard when your MO doesn't give you any guidance. At least give the pros and cons of each treatment or non-treatment. When starting out, we just don't know enough to make informed decisions. Once an MO recommends something then we come here and ask and see what others have done in the same boat with the same recommendation(s).
HUGS!
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Kdtheatre, I almost always post on my phone. It's very mobile friendly.
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Thank you Peggy, Sandy, and Molly
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Ayr, out of curiosity did your neoadjuvant hormonal therapy work?
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Miles - I'm going to differ from Sandy in my thoughts because I read your tumor as PR- and Her+. They almost always do chemo for Her + because they go for the cure. Then with the Pr-, that is higher risk for recurrence in 15-30 years, so they recommend chemo with that. I would normally say GET THE ONCOTEST, but they don't do always do oncotests with Her+ because they recommend chemo that works for Her+. So, if I read your bio correctly, I'd get the chemo. It's tough, but doable, and it's recommended for Her + and Pr- (regardless of Er status). Are you getting a second opinion from another doc?
Stillme - Zingers? Yep! I'm a year out now, and I hardly get them at all now.
Justme - are you getting a second opinion? Were your Brca and Palb genetic tests negative? Some people get a mastectomy after DCIS diagnosis if genetic tests come back positive. If negative genetic tests, I agree with Molly.
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Dara - glad that headache subsided! That hat does look adorable on you...
Ayr - I didn't use any type of cream other than regular body lotion until I started to see a light pink tinge to my skin. I used Miaderm...a cream developed my ROs that I bought on Amazon. Miaderm contains calendula, so I have to believe that a calendula cream would be similar. What I really liked about it was that it wasn't greasy. You may not ever need anything more emollient, but if/when you do there are lots of other choices specific to individual needs.
Miles and justme - things will start to be less overwhelming soon. The worst part is the wait as all of the pieces of your pathology accumulate. Once you have the entire story you can settle in to your treatment plan and concentrate on #kickingcancersbutt. We'll be here to support you.
Sandy-hoping you are feeling better!!
Grazy - thinking of you as your mom's "moving day" comes to a close. Hoping you have your feet up and a glass of wine in your hand by now.
Poodles - wishing you the best in navigating those insurance disputes. Many work out as they should, but no one needs the stress the entire process brings on.
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Before I gave Miles advice, she hadn’t posted her full dx info from her biopsy. Since she has now posted it, I will change my advice to agree with Sloan that she will definitely need chemo: HER2+ means targeted therapy (Herceptin &/or Perjeta) which is always given after a course of chemo. (The exception is a trial currently underway giving neoadjuvant--i.e., pre-surgery--Herceptin plus an experimental vaccine for women with ER+/PR-/HER2- tumors >2cm, regardless--correct me if I'm wrong, Barred Owl--of node status). With HER2+ positive tumors, there is no OncotypeDX testing--game over, go straight to chemo. OncotypeDX is only for ER+/HER2- tumors with up to 3 positive nodes. (Until recently, only node-negative patients were eligible).
Where everyone seems to be getting confused about that ODX score of 60 is that there is a separate ODX test for DCIS, graded on a scale of 0-100. 60 is high-intermediate there, IIRC. I have never on these boards seen an ODX score for IDC any higher than 40-ish, and that is highly, highly unusual. (That patient, whom I've met, is undergoing chemo now, for the second time).
I've been getting zingers occasionally, but suddenly quite often. That began happening the night of the day I got my Zometa infusion, and I was getting them in my foot, knee, shoulder and occasionally both hands as well. They went away when I took Lyrica at bedtime last night (my orthopedic surgeon prescribed it at my thumb-surgery-scheduling appt. when I described the “zaps." He suggested that if it helped but wore off, I could take an early evening dose (as long as I wasn't driving, drinking or in danger of falling). My fever is seesawing but nowhere near what it was last night, and the only “zaps" I've been getting are in my head, along with increased tinnitus: hello, allergy season! (I always get it with sinus congestion and when I'm still in “sleep debt;" though I got 8 hrs. yesterday, I haven't fully “repaid" that sleep debt. I will take the Lyrica at bedtime...as soon as that 3 oz. of 2007 Mumm Napa Santana “Supernatural" Brut I had with the scallops I seared is out of my system. (Funny--I still love the way it tastes, but the usual “glow" is disturbing to me while I'm “buzzing" with sinusitis and tinnitus, and getting over Zometa. Hope the bubbles don't dissipate in the fridge before I can safely get to the bottle again)
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Chiming in on rads care: my routine was to shower, go to my treatment, slather on Aquaphor in the locker room and treat myself to a slice of Hoosier Mama pie or quiche en route home. (I don't recommend the pie part unless you're underweight or then go straight to the gym. I'm still trying to undo the damage). At night, I would first use 100% Aloe Vera gel (dye-, fragrance-, and alcohol-free Fruit of the Earth brand) and then calendula cream. (Aquaphor felt too greasy without a bra). I was lucky--I got partial-breast radiation to just the area around the tumor bed, and the underwires of my bra fell outside the radiation field so I was able to get proper support right away. I didn't need antiperspirant--I stopped sweating in that “pit" for about 3 months--nor did I need to use the electric razor I bought. Before my cruise, I saw my PCP about "Super-Zit" on my back, and I mentioned I was perplexed about a painless blackish area in my armpit, because it hadn't been irradiated. He looked at me quizzically and asked “When was the last time you were refracted?" I countered “What do my eyes have to do with it?" He took a beat before answering, “Because that's......HAIR!."
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Sandy, you are so damned funny! And you have such good information. I agree that the HER2+ status changes everything. I didn't think I'd missed that information. Hope the allergies, sinusitis, and tinnitus go away (my ears never stop ringing anymore, sometimes I just notice it less).
HUGS!
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I just turn up the music and the voices in my head...just kidding...maybe.
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Swell Sandy ! That's two solutions or do you do both at the same time😆?
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Still out of town, but popping in briefly to say hi. Katz, thanks for thinking of me yesterday - it was a very long day, but my brother and I got all of Mom's boxes unpacked and everything pretty much organized. It's a beautiful apartment and I was thinking I could totally live there - have everything done for me, be a little pampered, haha! Sounding good about now. Day 2 is the phone and cable guy coming, I'll be hanging all the pictures and doing some errands. Will be a full day and then I head home to get younger daughter packed up and we head off Sunday to move her. And yes, when we got back to my brother's house last evening, my sister-in-law poured me a lovely, chilled glass of white wine, aaahhhhh
and I was asleep by 9:30.Dara, you look so beautiful in your profile pic. You have a wonderful attitude - I like that, although I also like the drive away from the carwash with suds flying Dara too
Sandy, well, darn - I'm sorry you had a crummy Zometa experience. Other than having had breast cancer, I've never had any health issues so maybe that's why I tolerated it so well and didn't have any side effects. Who knows... I hope you're feeling better today.
Welcome to the new gals - I concur, waiting is the absolute worst part of the diagnosis. Once a plan is in place, you really do settle down and just deal with business. As Peggy said, at the beginning, you don't know what you don't know and your head swims. In no time at all, you'll sound like an oncologist yourself when you speak, you'll be so educated on the matter
Well, it's time to get ready for round two of "The Move". At least, both brothers and my other sister-in-law will be there today at times, so there will be lots of help to hang the artwork, finalize things and I can get back home. Have a good day, all.
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Sandy - haha! Funny story. (Also, I figured something was up with your advice!)
To those who need chemo :
Sometimes people get sad when they find out they need chemo. It's quite the opposite. When you get a test result back and the doc suggests chemo for stages 1-3, she is suggesting it as a precaution so the cancer doesn't come back in 10 years. Cancer is no longer a death sentence! You can do this, and we are here to help you!
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Sloan - I didn't know that PR- was more of a risk for a recurrence. During my very first oncology appointment (this was the first opinion and I didn't end up going to the facility) while we were going over the path report, I asked about my 50% ER / 30% PR, the MO said "Oh that's low" with a stern look on her face. I wonder if she was channeling that. Not that it matters now, I had pretty strong drugs as it is, and being premenopausal, just started on the Lupron+Letrozole regimen. My God my knees, feet and neck hurt! If it doesn't normalize soon I might have to try a different combo.
But I did finish rads yesterday, wheee! I have a big reddish/brown square tan over my left breast and under my arm. Every time I look in the mirror after showering I secretly wished it was shaped like a lightning bolt as a tribute to Ziggy Stardust.
Sandy, sorry you are going through so many side effects. Do the Zometa SEs subside after a while?
Welcome to the new ladies on this forum. This thread is extremely active and FILLED with a wealth of knowledge, support and hilarity. I'm sorry you are here, but you are not alone.
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Well - I celebrated too soon.
Still good news I guess that my nodes and margins were negative, but...My BS just called and it turns out one of my tumors is now Her2. So no oncotype testing for me...and straight to chemo. But I will keep in mind what Sloan states - it is a smart treatment to do to battle this beast so it doesn't come back. I will also be doing the Herceptin. Have an apt with BS & MO on Monday to learn more. Running out for errands - but will be doing more research to understand my next steps in this battle. #cancersucksass
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kdtheatre I'm sorry kd that you'll need chemo. It's not fun. BUT, on the other hand, the drugs for HER2+ are very very good, and it's a tool you'll be happy to have. This article is relevant and very good news for early stage HER2+ diagnoses:
http://www.breastcancer.org/research-news/hercepti...
And if you only need Taxol+Herceptin, it's very tolerable.
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Kd, So sorry about the chemo recommendation. Like you, I thought I'd go straight to rads and then thought well, I guess I take a little detour to chemo first. It really is no way as bad as I thought. We have a great thread for August chemo and there will be a September group as well. We give each other tons of tips both before, during, and after treatment. You could join the August group and then also the September group so you're experiencing things at the same time. The women are just as great as on this thread.
Someone asked about the ranges for oncotype. Here is the link from this site that explains the ranges. Basically, below 18 is considered low risk. Above 30 is high risk and chemo is recommended. In between is the intermediate range where either further testing (MammoPrint or Prosigna) are suggested. My onco was only 20, but then with the Prosigna I came back high risk for recurrence so am doing 4 cycles of chemo before rads. If I ever had a score of 60 there would be no doubt for my decision, but I should would get a second opinion regarding no chemo. Here is the link: http://www.breastcancer.org/symptoms/testing/types...
My next chemo is Monday and then I'll be halfway done. Lots going on this weekend with family gatherings so time will go quickly. Hope all are doing well, and that those of you working aren't getting too tired.
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Grazy, I think you should change your name to CRAZY! I'm glad you are getting your mother all settled and that the rest of the family is helping. Hurry through that and get home to take DD to college. What a fun time!!!
KD, That certainly does suck. Especially since you didn't think you'd have to do chemo. You'll manage. As my DIL said through colon cancer chemo, at every infusion she told those drugs to KILL CANCER. Keeping the goal in mind helps a lot. Take Dara's recommendation and join the chemo groups. Just like here, there will be a ton of helpful information for you. Plus it's nice to have others going through the same thing you are so they understand immediately.
HUGS!
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Hi everyone, I'm new on this thread. I had a lumpectomy on Monday for DCIS and a 7 mm invasive tumor. The surgeon called with the pathology report yesterday and news was mixed. She got good margins on the invasive tumor, but missed one edge on the DCIS. And the DCIS was much bigger than expected: 6.5 cm compared to MRI/mammogram estimates of 3.2 to 3.9 cm. She took out a total of 9.3 cm of tissue and now I have to go back under for that one margin. I'm wondering how my formerly D-sized breast will fare through all of this. Oh, and the invasive tumor was right behind the nipple and the surgeon says the nipple will likely be inverted as a result.
Anyone else here with extraordinarily large lumpectomies? How long before you knew what your breast would look like? How about inverted nipples? Is there any hope for restoring it to an outie? Massage or something? How about reconstruction? This is all so new to me, and I'm feeling pretty shaken up. Lots of questions. Your experience is appreciated!
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Guys who had chemo ...esppecually tje ones in their 40's what did they tell you the risks were aside from the nausea and taste and fatigue. I keep hearing risks don't always outweigh the benefits but I am feeling with my LVI that i NEED to do more than radiation. How can doing chemo be harmful.... I am feeling like it is extra insurance for my future.
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Sandy, CONGRATULATIONS on becoming a BCO VIP! That's awesome. The nomination quotes are so right on. We love having you here with your wisdom. BCO VIP
HUGS!
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Feeling a tad bit better today. I took only one Lyrica last night, at bedtime, and the “zingers” have pretty much subsided. Temp running about 99 right now--high-ish for me but in no way “fever.” Realized that the headache that returned last night despite having been well-caffeinated earlier in the day was not Zometa-induced but rather garden-variety sinus congestion. (The kind that doesn’t stuff up your nostrils, but is behind and above your eyes). When I’m sleep-deprived &.or have sinus congestion, I also get these “head zaps” along with my tinnitus. A friend of mine once described the sensation as “shells softly snapping shut.” Once again, mold and weed pollen counts are sky-high. And because the barometer’s dropping and there’s a storm predicted for tonight, my arm feels a bit tight (though I’m not pitting) and my head feels full. I think I will do MLD later today.
I think the reason I reacted to Zometa the way I did (textbook, according to my MO’s nurse) is probably my preexisting allergies, previous orthopedic surgeries & injuries, and arthritis exacerbated by letrozole.
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Simsoka, Welcome. I'm glad you found us. I can't answer your questions but I know the ladies will chime in soon. That's rotten that your margins weren't clean.
HUGS!
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Thanks, Peggy. It does kinda suck needing to have a second surgery. But I'm learning to be a good patient.
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Simsoka, Before you go for your re-excision, I would consult with a Plastic Surgeon. Perhaps, oncoplasty could be done to prevent the inverted nipple with size Ds there is definitely material available to move around. Mine was not under my nipple but I had one benign spot and one IDC a couple of CMs apart. I had oncoplasty (moving your breast material around to fill in, reduction of other breast, and a lift of both. Results were great. It is a harder recovery than just a lumpectomy. If you just had the oncoplasty it would probably be a similar recovery to lumpectomy. Anyway to know what could work for you, you would definitely need a consult. According to the law, you have up to two years to get reconstruction covered by insurance for symmetry purposes work to both breasts is covered. How ever have the consult now as I think options are different once you've had radiation. Best wishes, MJ
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Simsoka, Being patient is something we all have to learn to do. Most of us don't do very well at it
HUGS!
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Simsoka, sorry you didn't get clean margins. I had to have a second surgery too. So I understand your impatience. My tumor was smaller & closer to chest wall. Other than scar, I can't tell that size has changed much. Consulting a PS sounds like good advice.
Fightergirl, congratulations on finishing rads!!
KD sorry you have to do chemo.
Sandy, glad you are starting to feel better. & congrats on bco VIP nomination!
Grazy, hang in there. Hopefully things will calm down soon for you.
I had an uneventful appt with MO today. Blood work was good. I've been staying away from chocolate & junk food and have dropped over 8 lbs since my first visit to see her. And after 6 weeks on tamox still no noticeable se! Hope that continues. Go back in 3 months. Celebrated with some shopping. (bought 2 pair of shoes, shhh, don't tell DH!) And came home & took a nap. Still not 100% on energy. But I think that's getting better.
Hope you all have a relaxing weekend!
Trish
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Trish, way to go!!! If DH finds out, remind him that shoes don't add pounds
HUGS!
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