Ladies in their 40s
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thanks AmyinMI!
Jenwith4kids, Oh gosh I don't think you are being nosey - I think the reason we are all here is to try to understand this stuff better - it's almost like getting free second opinions! I have been asking tons of questions to people - hope I haven't offended anyone along the way! I had high Ki67 and P53 scores which put me into "Luminal B" cancer (which is more aggressive that Luminal A). For that reason we opted for chemo regardless of oncotype. My cancer was found on a routine mammo - my OBGYN sent me directly to the surgeon, who then referred me to MO after surgery - I never even met my MO until after my lumpectomy. Weird now that I look back, but I didn't realize that wasn't "normal" and I was in shock so just plunged ahead. Still not sure why MX was never discussed with me? I guess just because they figured they caught it early? My understanding is that MX would not have changed my need for chemo, which makes me feel better. The concern with the Ki67 and P53 is mets - trying to kill rogue cells that may have started migrating in my bloodstream so they want chemo to chase them down and kill them before they have a chance to land and start proliferating. That scares me a lot more than the cancer coming back in my breast again. Waiting for path is torture - I feel for you!
You may already know this, but if not here's a helpful little summary on the 4 types of breast cancers: http://ww5.komen.org/BreastCancer/SubtypesofBreastCancer.html
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thanks ycats. I haven't met my oncologist yet either, havent even chosen one for that matter. I suppose they can't tell me much without full pathology anyway. Initial results from my biopsy show Ki67 at less than 10%. I dont know what my p53 is (thats a new one for me). My er and pr are 100%... I guess time will tell. Thank you for your reply!
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ycats70, thanks for posting that link. I had not seen that before, and haven't heard my docs describe my cancer by one of the subtypes (maybe because I haven't had surgery yet so I don't have a Ki67 or P53 score). From reading it, I think I must be Luminal B as well (I am Her2+ but also - if only weakly - ER+).
FWIW, my BS has never discussed MX with me either. I saw the MO before surgery only because I am Her2+ and a new protocol was to send every Her2+ patient to the MO for consultation pre-surgery because Perjeta (another targeted therapy drug that treats Her2+ cancer) is only available for early stage cancer pre-surgery (not approved for post-surgery). In the end, my MO did not recommend Perjeta. At that point, it was really my choice whether to do chemo first or surgery first. I went with chemo to get it over with (and because they can monitor whether the chemo is working by what effect it has on the tumor).
Now that some of the shock has faded and I'm thinking a little more clearly, I am wondering about BMX. It seems to be a choice that so many women are making. I am meeting with the genetic counselor on Thursday. I'm hoping that meeting may help me understand risks better. I have calcifications on 6-month watch on my left side (tumor is on the right). On the one hand, I don't want to have more invasive surgery than necessary; on the other hand, how would I feel if in 6 months, it's cancer on the left?!!
Is anyone else following Amy Robach as closely as I am? She started chemo at the same time as me, and she's apparently having 6 rounds too. I read about the 6 rounds because she is in Sochi right now, working, and said she'll have round 4 when she returns to the US. I'm pretty amazed at her stamina & how she is working in Russia at the moment. And also at her hair - I assume she's using Cold Caps because it doesn't look like a wig. But then again, she probably has the resources for a totally custom wig. who knows?!
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Hi ladies, i was dx at 38, i will turn 41 this summer, i just wanted to say its all so different now. When i turned 35 i was terrified of turning 40, now i terrified not to turn 50 ;( its just crazy how bc affect our life.
Wish you all the best
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I forgot to ask have any of you hear from Tessa?
i removed the breast implant forum from mt fav and havent seem Tessa around. Hope she is well.
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Enerva - you are absolutely right about how BC changes our perspectives. I totally agree with you that I am terrified of not turning 50!!
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lol I am glad i am not alone ;(
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I was told that each MO has the AIs they like to start with and that they all do the same thing for BC, but that all people react differently to each one. I started with tamoxifen and once I had my hysterectomy I switched to Femera. I was on it for one year and could not stand the joint pain and my MO decided to switch me to Arimidex. She also said there is one more I can try if the Arimidex gives me too many SE also.
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Just an update and you ladies can shed some light... saw the oncologist yesterday. He suggests chemo first to shrink which I see some of you have done also. He did blood work for a tumor test? Any of you had that? Also he is scheduling a PET scan first. He said just to make sure if anything else needed to be treated. I knew it was going to come but of course sends a little fear. Each step seems to be one I have to sit and process and decipher. He alos mentioned an Echocardiogram...he said that is standard when chemo is involved. Does that all sound right???? I felt comfortable with him so I figure I'll just go with it....Also....my breast his starting to swell some...it's been a couple months since I found the lump. Now it is starting to feel strange.. hard to lay on that side.... and maybe make me feel a bit strange. Anyone else had that? Maybe it's just my body reacting to all that's going on...
Thanks for any input!
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babyduck,
I did not have the chemo first so I cannot help you there, but the rest seems to be entirely part of the process. I had PET to make sure that the cancer had not spread elsewhere because it would be treated differently if it has. I also had the echo prior to starting chemo - my regimen involved Adriamyacin (ACT), and an echo is required prior to beginning this particular regimen. I assume they do the same for other chemo regimens as well. I hope it all comes back clear, and you can start your treatment soon. I also had the bloodwork for tumor markers as part of collecting information regarding my cancer and the extent of it.
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Hi Everyone - I was dx the day before my 43rd bday. Thanks for starting this thread.
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Hi peacestrength,
Welcome to the thread. Looking forward to getting to know you.
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I was just diagnosed this last September at age 48, still premenopausal. No surprise for me--I am third generation now to get it in her 40s, and we have numerous relatives with multiple other cancers, esp colon, kidney, and prostate (I am BRCA negative though). Still, I didn't think it would happen this young. I paid attention to lifestyle factors, even breastfed my three sons for a grand total of 7 years, partly because of the protective factor. I thought I was lucky at first--only Stage II, negative nodes, only Grade II, low oncotype score (13). Treatment has gone well, except I despise this blasted tissue expander (I will be getting a DIEP reconstruction in July). Very few symptoms so far on Tamoxifen. However, I started reading some of the funny, sarcastic blogs out there, which I really enjoy, but began to notice that some of those women also began as Stage II. Now, I feel fear settling in. I never got a bone scan. I avoided chemo and radiation, because of my mastectomy and again overall favorable prognosis. But I wonder if I am not "doing enough." One of my great aunts got breast cancer in her late 40s like me and lived well into her 70s, so I think, if a woman survived that long ago with the treatment they had then, surely I can make it? I am just finding it challenging to deal with the fear of recurrence. Thoughts?
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babyduck, I am in the middle of chemo (TCH), pre-surgery. I also had the echocardiogram before starting chemo. Of all tests/imaging/etc that one was a pretty easy one. I had an MRI before my treatment plan was fixed, and also a mammogram with the tumor marker in (for purposes of surgery later). The MRI was much harder. Mainly because my arms fell asleep & I was dying to move them, but wasn't supposed to move a muscle. MRI did not show any lymph node involvement and I did not have any other scans.
pzercher, tumor is in my right breast. It is so ironic, because you know how babies prefer one breast over the other? Both of my babies preferred the right, and my younger daughter to the point that I couldn't really get her to nurse on the left. For the last few months, I only nursed her from the right boob, she refused the left. So how come I have cancer in the right breast?!!! Every time I read about breastfeeding working to reduce your risk, I think about this.
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I am so sorry you are experiencing these feelings/fear of recurrence pzercher. My mom went from Stage Ia to Stage IV. So, yes, I have been acutely aware for many years that progressing from the earliest invasive stage to stage IV is a possibility. I did not think I would get diagnosed this young either (at age 40) as my mom got diagnosed at 45 - I thought I had a few more years. Due to what happened to my mother, I decided to take a very aggressive approach. I was even going to do rads but my onc (who is also very aggressive) basically said enough is enough! I had an extremely high Oncotype though and two very distinct tumors, so chemo and an aggressive approach were warranted in my case. I said to myself that I would regret not having done enough if the beast comes back. (My mom has.) But now, since I have done all that I could, whatever happens, I will need to feel peace with respect to my treatment choices. I think it is really important for each of us to be at peace with the choices we made. Unfortunately, the fear of recurrence does not go away for any of us (perhaps it lessens with time for those of us who are fortunate enough not to have to deal with cancer again). In your case, I think most oncs would agree with the approach you have taken; so I hope you can get some peace from that. Also, my mom's aunt who also got breast cancer in her 40s did live until her 90s and died from old age. So, I have no idea why things happen the way they happen, or why one person lives a long life and the other recurs. The uncertainty of cancer is one of its most jarring aspects.
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I also breastfed my twins (with double the milk production!) for an entire year and still got cancer. Perhaps the genetic component could not be overcome by any of the lifestyle choices.
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My treatment plan does reflect the standard of care at this time--it was just hard for me to wrap my head around the thought that I could get BC in my 40s and not need chemo. I am wondering how many of you had bone/PET scans despite being node negative? I am wary of excessive imaging because I had an MRI early on that had all kinds of false positives (second spot on the left, new spot on the right, oh and suspicious nodes on left). All proved negative with biopsy, and I and my family suffered greatly with the thoughts that my condition might be worse than it appears to be. My husband and sister are both physicians, so I have heard enough stories to know that our imaging tests don't always tell the whole story.
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I had a PET despite being node negative (which was ordered by my BS). I am glad I did; it gave me a measure of peace. I totally agree that imaging tests are not perfect. Also, I totally understand why you are not doing chemo (or why the doctors are not letting you have chemo). Because of my "baggage" from what happened to my mother, I would have insisted on chemo but I am sure this would have been viewed as an irrational request by the doctors. I do not believe in any test 100%, including the Oncotype. They are just educated estimates. At the end of the day, this is our life; nobody else is going to care as much about whether we live or die. We have to make the decisions which are right for ourselves.
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Well said YoungTurk. I have a friend who is annoyed with me for doing so much of my own research (because some of it scares me) - her attitude is that I should trust my MO, and if I don't completely trust her, then I should find another one. I am trying to explain that I do trust my MO, but it doesn't mean that she knows every little nuance about my body and how it will react to treatment. I told her that if I die, my MO will be very sad and upset and will take it very hard; then she will start focusing on her next patient, go home, eat dinner, etc. I, on the other hand, will be dead. Therefore I think it is important that I understand the ramifications of each potential treatment option before just plugging along into it.
pzercher I wish I had some wonderful words of wisdom for you to help with the fear. I am struggling with that myself so much for the same reasons as you - thought we caught it early, favorable prognosis, etc. Then once I started doing more research I realized I'm not as "safe" as I thought (hence my friend getting upset with me for doing that research). I agree with what YoungTurk said earlier, that most MOs would agree with your treatment plan as being reasonable. I think the best thing we can do is keep an open dialogue with our drs, keep our eyes open to any new research that comes out (like those darn SOFT trial results!!!!) and try to stay as healthy and positive as we can today. My DH has told me several times not to ruin the time I'm feeling good right now worrying about what might happen later - just enjoy right now. Easier said than done, especially for someone like me with anxiety, but I am trying…
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I hope not to offend anyone by my input here . I lost trust in Doctors, they let me down so many times that now i do research. i listen to what they have to say i write things down then i go home i research then i make my decisions. The way i see it now is i cant go in their office and simply agree to anything they suggest at the end of the day it is my life, my body and they go home to their life, i am the one with bc i am the one with the consequences.
Best of luck to all you sending bug hug YCat, Youngtyrk, Pezch
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For me, mammograms missed my bc far too long due to dense breasts. Diagnostics are highly flawed - two of my physicans also stated this. One said they are good at taking pictures but no so good at understanding what's showing in the body at a point in time.
With this said, I am very thankful for diagnostics. Very thankful. Being stage 3 and node positive, I have had several PET, MRI, and CT scans. We need some kind of a guide to keep check of the body before and after cancer - scans, images, blood work. What I'm trying to say here is no matter what stage a person is, it is our responsibility to be our own health advocate.
Push and make a case if you feel strongly about receiving a treatment or test. We all want to survive this horrible disease - this is our life - our physicans are tools to help us. Right? Insurance can get in the way but I have found that if I give my physicans enough research information, very often they will get my request approved by insurance.
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peacestrength....did your dr suggest chemo before surgery? That is my dr suggestion. Just wandering how you felt after surgery...due to going through the treatments first.
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Count me in-- 45 at diagnosis with an 8 & 11 year old. Great idea starting this forum ..
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Thanks so much, ladies, for your wisdom and reassurance. My mammogram also missed my cancer because of breast density; I found the lump myself because there was an indentation when i raised my arms over my head. My husband and sister are both physicians (adult primary care), and they have been stunned to learn more about breast cancer not only being harder to spot in dense breasts but also occurring more frequently. My experience has changed their advice to their patients regarding screening, and they now scrutinize their patients' mammogram reports to find out the density. I do think it is so important for women to be informed and especially know their own bodies/sensations. For example, I was just reading a study that indicated the muscle/bone pain many experience with Tamoxifen is associated with the generic versions, not with the original name brand--has something to do with the binding agents, they think. If I develop those problems (only on it for two months so far...), I fully intend to explore this with my MO. Perhaps once I settle on a plan with my doctors--regarding screening and followup care--I can settle down and live more in the moment. Start tackling that bucket list.
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I am on Femara - the brand - and had very few issues. I specifically requested the brand name because my husband who is on a different medication (not related to cancer) had a violent reaction to the generic version of the drug (which was accidentally dispensed by the pharmacy despite a request by his doctor for the brand name drug only). He is completely fine on the brand name. Despite the fact that the brand name in both instances is much more expensive, we stick to it.
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welcome to the thread swimmom2!
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Babyduck - yes, I had neoadjuvant chemo and then bi-lateral mx. I had my mx 3 weeks after my last chemo treatment. My wbc rebounded nicely but recovery was rough and long but I am doing ok now. I've had radiation and another surgery since then.
I agree about generic Femara - I did research on where generic Fermara comes from and decided the quality was compromised - the brand is expensive since my insurance only covers half but it's a financial sacrifice I'm taking for survival. I have very few issues with taking the brand Femara.
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thats interesting about the muscle/bone pain with tamoxifen...i had it so bad i had to stop taking mine. I was on generic....definitely going to ask about maybe trying the name brand.
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I still have time to make a decision re lumpectomy v. MX v. BMX. Lumpectomy should have "really good cosmetic results" according to my surgeon. A friend with similar diagnosis and same surgeon says that you can hardly see her scar when naked, see nothing if she's wearing a swimsuit.
Seeing a genetic counselor on Monday and hoping that will help me understand risks better.
I too have dense breast tissue. I had my first mammo ever in April last year - was called back for more images and U/S in May. Then, the radiologist did not see the mass, just suspicious calcifications put on a 6-month watch. When I went for 6 month followup in November, voila! 2cm IDC in the right breast (and the left breast suspicious spot remains on 6-month watch). I do wonder how mammo missed this in May. (To be fair, a clinical exam in July missed it too - as did I). I wonder how much of a factor it was that there was no baseline mammo to compare against in May. Should I feel more assured that a future cancer will be caught with mammo screening earlier next time because of all the prior imaging that I have now?
The idea of going through treatment all.over.again in the near future (next 5 years) is so awful and daunting. On the other hand, if there's a recurrence or new cancer in 10-15 years down the road, I'm hopeful that science/medicine will have moved on and maybe it won't be so bad . . . and it would be worth hanging on to my body parts for that long. Wish I had a crystal ball.
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I was diagnosed a week before my 43rd birthday. I have 3 year old twins (boy and girl). They are my heart and on my dark days when I think about the possibilities of them growing up without me, it kills me. Thank you for starting this thread.
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