Lumpectomy Lounge....let's talk!
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With hormone-negative bc, excess body fat is not the recurrence risk factor that it is for Luminal A/Luminal B/triple-positive patients. If you do the chemo, don’t expect that it’ll reduce your weight—it’s usually given with steroids to mitigate side effects and you will probably gain weight (or not lose even if your appetite is off). The stereotypical image of the emaciated, cachectic cancer patient does not hold true for early-stage breast cancer patients undergoing adjuvant treatment. Lose weight to make you feel fitter & stronger, regardless of treatment.
If I were healthy, active, only 20 lbs. overweight and only 52, I would consider chemo if I had your tumor biology. (Heck, with an OncotypeDX of 16, which is at the high end of “low risk” for recurrence, I might have considered it—but I was 64 when diagnosed, asthmatic, and allergic to the 3 most-often used antibiotics, and thus at risk for infection). You are young & strong enough to get through it. Ask your MO what she’d recommend if it were her mom, sister or daughter. (Or if she was the MO mentioned who is going through bc herself, what she’s doing).
And again, no matter what, once you’re done with chemo & rads, you won’t be facing five or more years on Tamoxifen &/or an AI.
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ChiSandy: My Oncotype DX score is also 16. My oncologist recommended chemo until my score came in the low range. Before I knew the results she said my mortality rate was 20% with surgery and chemo. With HT treatment it would drop to 13% and she would recommend chemo because my tumor was large at 3.0 cm and that chemo would decrease my rate to 6%. Well after I received the low Oncotype score she didn't recommend chemo anymore because the risk wasn't worth the gain. My new rate is 10% with the Oncotype test. So for a 4% reduction it's not worth it but it was for a 7% reduction. I really wonder if I should have had chemo. 90% vs a possible 96% survival rate seems worth it since I am 48 years old. I was really afraid of chemo and didn't want it but now I am afraid I didn't do enough. She told me that it wasn't worth the risk so I agreed with her because she is the doctor. Maybe I should have gotten a second opinion but now I feel it's too late. I just finished radiation last Wednesday. I haven't started my HT yet.
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Poodles- thinking of you but it is sounding like you are making SO much progress!! YAY.
Molliefish- haven't "seen" you lately...how are YOU?
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Brightness - Sorry I don't have anything to input on weighing your treatment plan. But give yourself time to weigh out your choices. And I like ChiSandy's comment about asking your MO. Don't just accept the answer, ask him/her to explain out the reasoning behind his/her thoughts. And Lordy girl, a good cry is just that, a good cry. Its a cleansing, we've all had them. Sometimes they come on at very unexpected times. Let it all out when they come. Hugs!
My news today is I had my first followup mammogram from surgery. Good news. I didn't really fret over the appt. and didn't even tell my hubby as other things were going on. When I got to the waiting room, I felt odd as he had been with me throughout all my appts. It felt like he should have been there so I text him and said that. I felt so bad as he immediately felt like he needed to leave work and be there and was asking why I didn't tell him. I really didn't "need" him there, it just felt odd since he had been for so many other visits. I mean we even sat in the same chairs every time. So I apologized for poorly wording myself. But it was nice to send him the good news text afterwards.
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in the flavour of Dr Zeuss... I am here I am here I am here.
All is well. Getting along nicely. Transferred to a new job last Monday, follow ups here and there, but no concerns that cause any worries. You?
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Hi guys. Seems I show up on here about once a month with a question. I know there is a group just for people who take anastrozole ( armidex?) but this is the only really activel engaged group. So yay for you!
Now, here's my question. It dawned on me that an odd phenomena that has been happening, started after I began my hormone treatment. I often wake up while experiencing small tremors throughout my upper body. They slow down and go away as I lie there and wait for it to subside.
I did a bit of reading and see this has been a reported sude effect. But I don't know if it goes away over time or if there is any reason for concern. (I've been taking the pill for a bit over 2 months.) I am going to ask my MO, of course. But seriously, the info I get here is usually more in depth and thoughtful.
Thanks in advance.
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It would concern me enough to talk to my doctor. I don't know if the anastrozole is causing it, but it sure is suspicious.
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Does it feel like you're shivering? It could be messing with your thyroid or hypothalamus. Might also be a form of night terrors, exacerbated by the drop in estrogen levels.
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Robin, I don't know anything about your situation, but I'm sending positive thoughts your way. This whole ordeal can be so scary. I'd definitely call your doctor just to be safe.
I'm leaning toward getting the chemo/herceptin. I asked my local MO (she's such a lovely person) what she thinks and she said her concern for me is how I would feel if it does recur as a stage 4 with mets. She said I seem like the kind of person who would blame myself for not doing chemo. She is right. Plus the thought of not being actively involved with my grandkids and their day to day scheduleis unbearable to me.
Does anyone know if doing all 12 weeks vs maybe stopping after 4-6 makes much difference? I'd like to keep my hair and get back to normal as quickly as possible, but I don't want to stop before it does any good. I guess I'm in the bargaining phase of my grief. I don't want this to be my reality.
I hope everyone is doing well. It's good to know that life goes on after this, even the day to day minutiae seems like a blessing lately.
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Brightness, how likely does your MO think that would be - stage 4 mets? I would think with increased monitoring (my surgeon said we would alternate mammo & MRI every six months) that you would catch any re-occurrence before it would get to that stage. I've also been considering not doing chemo & have my first MO visit today. I'll let you know what she says.
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Fleur, I wondered this too and just forgot to ask because my mind is overwhelmed. Interestingly, both MOs mentioned stage 4 with mets. I need to clarify that because it made me wonder, if it does come back does it just skip being small and contained within my breast? That seems unlikely, but heck, what do I really know at this point anyway.
KB870, I have to admit, I prefer the idea of just doing a few rounds of chemo, but maybe there's a reason for 12 rounds. I mean, if you only get say 11 rounds, are you not as well protected, and if that's the case, why stop at 12? Is it just an arbitrary number someone came up with and it became protocol?
And if chemo and herceptin is the best protection against recurrence, what's the point of radiation? What does it offer that's distinct from chemo?
Ugh, so many questions...
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I recently lost a friend who was my advisor and support through my breast cancer journey. Patti had BC 7 years ago. Very aggressive. Had a double mastectomy, chemo and radiation. She recently had it return in spine, and some organs. Her prognosis was dire and she went home with hospice and the good drugs and her family. She was a strong warrior woman who helped many of us with our own cancer. She passed at peace.
The best advice Patti gave me was to research the heck out of every part of the diagnosis and treatment. To ask every question and take the time to live with options and answers and possibilities in my head and heart. Then make the decision about the course to take. And once the decision was made, to commit to it and embrace it 100% as a healing and blessing and to be grateful and happy for my good fortune to have skilled doctors and caregivers. I remembered that every step along the way. As the radiation techs left the room before my treatments, I would always declare, "Let the healing begin."
Today I am thankful that we are able to offer support and tell stories. Patti would have loved this strong group of women!
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I'm sorry for the loss of your friend, Robin. You were lucky to have a woman like Patti in your life.
MJ
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Sorry you lost your friend and BC mentor, Robin. May her memory be for a blessing.
Brightness: chemo, targeted therapy, and radiation perform different functions. The radiation is to mop up any cells left over in the breast that the surgery may have missed. It is the most direct way to destroy tumor cells in a reasonably defined & knowable location (the breast). It, like surgery, is “local therapy.” It destroys, not just disables, tumor cells—but only where it’s aimed.
Chemo and targeted therapies such as Herceptin & Perjeta (as well as hormonals for ER+ patients) are “systemic therapies:" they work throughout the body to search for and damage cancer cells before they can metastasize (or if metastasized, damage and disable them before they can grow and further migrate). Chemo attacks cells that rapidly divide (the hallmark of hormone-negative tumor cells), which means they also attack hair follicles, mucous membranes (mouth, stomach linings), and bone marrow. But these non-cancerous rapidly-dividing cells do eventually regenerate.
Targeted therapies act on the HER2 receptors of tumor cells that “overexpress" HER2 (a protein that is a growth factor for tumor cells). With a lumpectomy, radiation is necessary. With ER-/PR- invasive (not in situ) tumors, chemo is necessary. And with HER2+ tumors, targeted therapy is necessary. Because HER+ tumors (whether hormone-positive-or-negative) are more aggressive than hormone-positive/HER2- ones because of this growth factor, targeted therapies work better on tumor cells already damaged by chemo. Without the targeted therapies, just enough cells damaged by chemo might still be able to express HER2 and resume growing. It's a synergy between the two angles of attack.
So you need all three: radiation, chemo, and targeted therapies. At least targeted therapy is an available weapon for hormone-negative/HER2+ cancers—for triple-negative, the only systemic therapy available (at least until immunotherapy is more fully-developed) is chemo.
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Robin, I'm so sorry for your loss. What an inspirational lady she must have been.
Chisandy, as always, thank you. Why can't the doctors explain things as clearly as you do? My kids have been asking why all 3 treatment modalities and I haven't been able to explain it well. Now I'll be able to. I'm so afraid. I've had to be strong through so many things in life, but I think I'm just about done with being strong. I wish so much that I had someone to lean on, but other than friends here and there and my kids a little (they are my children even though they are adults and they each have so many changes happening in their own lives) I'm alone. It's the middle of the night and I'm awake and worrying, so I turn to this site.
On a positive note, my cording is decreasing. I think having the PT show me exercises and massaging techniques has helped. I have an appointment again today. She wanted me to come twice a week for a month, but I may decrease it to once a week. I'm tired of going to appointments constantly and I'll be busy dealing with chemo and moving.
I hope everyone is doing well and feeling great
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Great first meeting with MO yesterday! She's undergoing treatment for breast cancer herself so she has an insight other doctors might lack. The plan is for 12 weekly chemo sessions (low-dose Taxol) plus the Herceptin. She said if I had been HER2- or just borderline positive, I may not have needed either, but my HER2 result was a very strong positive (>6; anything over 4 is considered positive) so Herceptin is a must and is only given alongside chemo. Next step is getting my port, and then we'll start treatment as soon as my surgical drain comes out.
I'm bummed that I have to have chemo, but I'm very comfortable with the decision to do it & have great confidence in my MO! I'm also very much aware of how lucky I am to only need the Taxol & not stronger chemo drugs, and I draw a lot of inspiration & courage from the stories & information shared in the BC forums & Facebook groups from others who have been through this & worse! Love & light to you all!
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Fleur, you have such a good attitude. I want to be more like you in that way.
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Robin - What a powerful friend you had in Patti. You said she would have loved this group . . . from your description of her I love her spirit too. I am sorry for your loss. Her impact on you is evident in your sharing her words of wisdom to all of us. I love your mantra you chose for radiation treatments, "let the healing begin". Its embracing the commitment to yourself. Beautiful.
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Fleur - I'm so happy you have a MO that you have great confidence in, it makes the world of difference. Sounds like she explained quit a bit to you.
Brightness - I'm thinking once you have all the information in front of you then your course of action will come more clear. The confidence comes with committing to an action plan. Give yourself time to absorb everything. The unknowns can be daunting but you'll get answers eventually and your outlook/attitude will be reflect a solid "I can do this".
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hi everyone, i hope this isn't a stupid question really but I haven't seen a lot of TNBC who have had the option to have a lumpectomy and decided on that instead of a mastectomy. And i was just wondering if there were any out there
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mkn86, I'm not familiar with TN, but there is an area on the forum just for people with that dx. Have you asked there? I'm sure some of the wise ladies here will answer soon, but thought I'd suggest this meanwhile. I hope everything works out for you.
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Thanks everyone for the encouragement. I am doing a 180 though and want to run something past you. Get your take on it.
I will start with the fact that I grew up with a sister who was a sociopath. Obviously there are many stories that can accompany that statement. But I will skip to the chase and tell you that I chose to become the opposite of my sister. I am strong, I don't complain, I am rather stoic and known for being an upbeat and positive person... no matter what. A tough old broad and the life of the party. No matter what.
Childbirth was of course a breeze with no drugs. Relationships with men always had me firmly in the role of pleasant peace keeper. No matter what.
After my BC... from diagnosis to surgery, radiation, and now hormone therapy, everyone will tell you I am a trooper. That Robin! So strong! And the way she keeps her sense of humor! Yes, I am an inspiration to others. Lol.
So.... I just realized that my upbeat persona was usually for the benefit of others. And often at the expense of my own well being.
Today I started writing down the timeline of this cancer gig. From Mammo #1 to right this moment. And I found myself crying. I realized my bravado gave everyone permission to assume that I am back to my jolly old self. When in fact, I am not. I lost something back there. Somethingmore than a cup size. There's a piece missing. And I just realized that missing piece is my own truth. I am often depressed, almost always fatigued, my joints are killing me, and I am very familiar with constipation and insomnia.
And I fear that I may have lost my way back to the old me.
And now that I have said those words aloud, I am going to have some serious conversations. With my husband and doctors and coworkers and family. I think I am done trying to impress everyone with how tough I am. I think I am going to lean on some people for a change. I think it will be a gift to them and to me. Man, this is almost as scary as cancer! Almost. :0)
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Oh, Robin - so many of us here can empathize with you. We put on that brave face for the outside world and fool ourselves into thinking that all is rosy. I tried one day to tell people who asked how I was feeling the God's honest truth - you should have seen their faces!
The old you is in there but perhaps slightly altered. We are all growing and changing every day - which is a good thing! I hope you found the writing and crying cathartic. We may not like it but this is the new normal for us all.
I wish you well as you have these conversations with your family, friends, coworkers and doctors. I hope you find many receptive listeners who will be there for you to lean on.
What I have found is that because I look so good (early stage, no chemo), most people have forgotten that I even had this disease. Occasionally someone will ask me how I'm doing - and that takes me by surprise! Much as I'd like to put it completely behind me, I have the occasional soreness and my scars to remind me.
Your strength has served you well to date. I think you're wise to relax it just a bit!
MJ
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MJ... you and I have very similar cancers and treatments. I tend to think of my breast cancer experience as cancer with a lower case c, as opposed to capital C Cancer that has taken some friends and brought others to their knees.
So it's understandable that people assume it's behind us. I have to remind myself it's been only 5 months since my diagnosis. Not long in the big scheme of things.
I need to take it easy on myself. Thanks for your kind words. I know many women can relate to always being the strong one.
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I've been a member of this forum for almost 2 years, where I received a lot of support, help and advice. I had a lumpectomy, successful as I thought on January 7th, 2016 followed by 9 months of preventative chemo and then 3 months of radiation which I finished in April of this year. I took a few weeks off prior to getting the first mammo after which turned into a sono when a Dr. did not like what he saw. He asked what was at the 10 o'clock position in the same breast and I remember like yesterday that when getting biopsied in November 2015, a radiology Dr. did not follow orders even when prompted by the tech in the room to biopsy the 2nd ordered, saying "Eh, it's just a cyst." The recent mammo/sono of this year turned into a biopsy, sadly, sure enough it's breast c. As was told, more aggressive, 8/9 on the Nottingham scale and ER+, PR+, as opposed to the 1st removed as a 3/5 Nottingham, only ER+. I am beyond terrified and the onc I was using could not provide me with a specialty surgeon, so I went back to where I 1st had surgery, not liking the treatment there. This week I will see a female surgeon suggested from a local lady who's a 5 year survivor and hoping she can give me some answers, though I do see surgery as the 1st thing to be done. I am terrified but curious, has anything this strange or neglectful happened to anyone else?
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Robin, what a great post! I'm very impressed with the level of self-awareness that led you to that realization regarding self-care! Sadly, too many of us take on the roles of care-giver, peacemaker, the strong one, the funny/sunny one, and we forget to check in with our true feelings, especially the scary ones! For me, I'm just a month & a half from diagnosis, and I'm already doing that somewhat, (despite being very open about my cancer & using it to encourage other women to get those mammograms & do those self exams) particularly where my husband is concerned. His primary experience was losing his mom to lung cancer that metastasized to her brain about ten years ago (we met not long after that). She only lived about a year after diagnosis, and although he doesn't like to talk about it (understandably), I know it was a very rough time. So he was actually my first concern when I got the call telling me that it was breast cancer, and I tell all my care team about his mom & the importance of explaining in what ways what I will go through will be similar & different to what he experienced with his mom so he won't worry. I'm weirdly at peace with it all right now (or I'm in such denial that I'm unaware of it), focusing on "what's the next step" in recovery. Thanks for the reminder that I probably need to check in better & deeper with myself and let some of those harder feelings come out so I can deal with them earlier rather than later!
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Nice Strat, MFPM! Still playing?
I haven't had my concerns blown off, or been misdiagnosed, but I hope they do right by you this time around.
Robin, I too have been guilty of putting on a strong facade, although deep down the gravity of my situation hasn't hit me yet because I've had it so much easier than so many in my life (both real and online). By the time both my parents were the age I was at diagnosis, my dad was seriously bipolar and had had three heart attacks and my mom had three bouts of kidney stones and the first stirrings of COPD & CHF. By that age, my maternal grandpa and uncle and paternal grandma were all dead of heart attacks. One dear friend has scleroderma, another pulmonary hypertension, another Parkinson’s, another NED from lung cancer, another had a BMX for DCIS. I’ve outlived a few more. My DH nearly died from a botched colonoscopy and had four hospitalizations and two surgeries—recovering just in time for me to be diagnosed. So who am I to complain?
I seem to have recovered thus far from (or adapted to) every health crisis, but have reached the uncomfortable age where you can't fix one thing without breaking something else, and can't fix that without breaking something else or making the original thing worse. (GERD, osteopenia, obesity, lymphedema and now anemia—all of which have drug and diet remedies that aggravate each other and conflict with my favorite pastimes). Still, I am in serious denial that I may be reaching a watershed—either pick one or two things to fix and live with the others, or drastically alter my lifestyle and give up many things I love to do. Only reluctantly have I cut back on performing & touring—those long driving trips can be brutal even for the young & healthy; and heck, unless you were a household (coffeehousehold) name back in the day, even folk music is now a young person's game (and my rock bass days are strictly limited to jamming with my old pals at parties).
But I’m still doing the occasional gig and not letting on to anyone in the audience (or in a position to book me) that my feet & back are screaming after playing standing up for 2-3 hrs and that my fingers are stiffening & even triggering. Not their problem. Even when I was in New Orleans and then en route to Scranton sweating out the period between ultrasound & biopsy, I couldn’t let on—and when the Scranton venue didn’t have a record of our gig (which my singing partner had booked and failed to confirm) I started to mutter under my breath that I could have left NOLA as soon as my conference & gig was over and have had my biopsy already, my singing partner reamed me out when we got back to the car. (Never mind it was a matter of life & death).
So I’ve had to keep up the facade. Not sure how much longer—or if I’ll ever get permission to drop it.
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hello,lumpectomy Lough
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MFPM - that's sucks how can they miss it ? Shouldn't they take care of everything???
Robin - I gave up to be tough and let my hubby took over the kitchen and the house. There are days I'm just can't do anything. I have to accept I'm a sick person for the bad days. I enjoy my good days but I won't over do things because I found I pay for it later. I feel like walking in ice all the time. I would not feel any better until I finished my treatment. Have I think about recurrence? I just started to think about it , I could only enjoy what God give me on the days I wake up. Will try to enjoy each days I can after the treatment I will travel some and eat some good food which I really missed now
ChiSandy - life is getting tougher and tougher when we get old. Love your spirits keep going 🙌🙌🙌
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MFPM, how terrible for you. I hope that your surgery takes care of everything this time. Interesting that your center uses the Nottingham score. I'd not heard of it and had to look it up. Praying for you!
Sandy, damn! Anemia on top of everything else? Geez. I don't have any great advice. I would guess in your shoes I would eliminate the things that are easiest. I know that you love to play but it sounds like that is taking its toll on your body and the stress is getting a bit much.
Speaking of being strong when everything goes haywire. When I was diagnosed I was full time caregiver for my DH who had Parkinson's and CHF. He was a very pessimistic person - no glass was ever half full. And as ill as he was, I couldn't share with him any concerns I had. And I really had little time to actually contemplate my Dx. I had to care for him and all my treatments came second to that. It wasn't until he was in a nursing home and I had finally gotten rested enough to be merely tired that I realized all I had been through. If it wasn't for BCO I'd never have gotten through everything with a modicum of sanity.
Have a great Labor Day. It's smoky here in Spokane from the fires in Washington, Oregon, Montana and Idaho, and HOT. No measurable rain in 66 days.
HUGS!
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