Lumpectomy Lounge....let's talk!
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Thanks so much Chisandy - Big Sister - yes you are right - there are so many acronyms I can't keep them straight plus I went from DCIS Stage 0 to IDC Stage 1 within one month. I'm not sure what the Grade is. I think 2 and was told the Ki-67 Antibody was "slow growing". ER+ PR+ HR+ and HER2-
My surgeon told me that Chemo was not necessary. I met with the Oncologist once and didn't really connect with her. I'm assuming that the MO will be my contact throughout this journey so I really want someone I can connect with so I may be looking for a different one - but as of now I've told the Radiologist to start scheduling me. I'll be 6 weeks out from surgery around the last week of Sept.
In an article I found from the NIH: "Conclusions: Women age 70 or above with low-risk early breast cancer who are reluctant or unable to pursue adjuvant aromatase inhibition can safely pursue adjuvant radiation alone with limited differences in outcome." (2019) but, of course, there are other articles that say different!!
And to speak to Maggie 15 - I also have Osteoarthritis, Rheumatoid Arthritis and Osteoporosis
Decisions, decisions, decisions. Thanks for listening
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Not just that, but there are three different AIs and most women find one of them has the fewest side effects. Even branded (hideously expensive, even from Canada) can differ from generic, and depending on the excipients & fillers there are sometimes differences among generics of the same drug. My MO put me on letrozole (generic Femara) because it made the biggest reduction in recurrence risk over tamoxifen or no endocrine therapy. I tried the branded Femara (from canadadrugsonline.com) but found that the generic Roxane & Teva had even fewer dyes & fillers. Eventually, could get only Accord, but by then I felt almost no SEs. Couldn't do tamoxifen, not just because it's contradicted with my maintenance antidepressant but because of the danger of blood clots at my age.
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Thanks - so much to figure out. Seems we have the same DX. Are there any %'s out there of rate of return if just RT and no HT
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Trilogy - There are several online calculators that let you enter information about your tumor and see the effect of various therapies. The first two links are for IDC and give options for chemo and endocrine therapy. Since you also had a separate area of DCIS I have included a calculator for that which references radiation and endocrine therapy statistical effects.
https://breast.predict.nhs.uk/tool
http://www.lifemath.net/cancer/breastcancer/therap...
https://nomograms.mskcc.org/breast/ductalcarcinoma...
My tumor was larger so I also had the results of the OncotypeDX to help guide my decision. These calculators are statistical models and will not predict exactly what will happen to you. Your MO should also be able to give you ballpark estimates about how much certain therapies will help and how likely they are to cause serious side effects in your situation. I went with radiation and declined the endocrine therapy knowing that my chances of MBC recurrence are increased by 7%. I have osteoporosis and a terrible family history there (bone collapse led to my mother's death and so far my younger sister has had 4 hip replacements, 2 knee replacements and back surgery) as well as arthritis which, in my opinion, was more serious than lessening the chance of recurrence. Although my RO thought I would be fine with radiation and I sailed through treatment with minor side effects, six months later I developed grade 3 late stage radiation induced pulmonary fibrosis even though the chance for that happening to a never-smoker is just 3 in 1000. It was pretty scary at the time, but I now am being treated by an ILD pulmonologist and am doing OK (walk 3 miles daily) on inhaled corticosteroids. Hindsight is 20/20 but I still think I made the correct decisions with what I knew. Both undergoing treatment and doing nothing can have consequences.
Good luck with deciding the best course of treatment for you.
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Maggie - thank you SO much for the info I'm going to follow those links right now.
Sorry about the side effects.but your post was encouraging to me. thank you.
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My doctor told me a few you weeks ago that if I stopped taking letrozole at the two-year mark that my survival rate would only be slightly impacted. He emphasized the word slight. I have not input my information and I don’t intend to because the site was hacked and I can’t tell you how much that irritates me,the information that got out there.
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Thanks Springdaisy -what site got hacked? This one?
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well my first answer they tell me didn’t work. I believe this was the site where I got an email saying
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springdaisy, are you saying BCO was hacked, or the sites with the online recurrence-predictor calculators? Difficulties experienced with BCO have been due to the platform redesign, not any malevolent interferences.
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Chisandy, I thought it was the breast cancer site but maybe I misunderstood everything in the message. I know they talked about possible images that maybe got stolen or whatever. You know more about this site than I do so I will take your word that it was not malevolent.
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Images are not being stolen from BCO--it's the software redesign that seems to make some memes postable and some not (I think the particular posting members' own devices may be to blame). Also, they're averse to posting members' geographical locations under their avatars the way they used to--they're being cautious about member security.
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That is very good to know. I am glad BCO are being that cautious with information. I already have been taking letrozole for a year and a half. A bit over that in fact. Pretty good as far as not having side effects.
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A couple of years ago, my MO did admit that the bulk of the benefit of AI therapy comes by the end of year three, but to try to stick with it for 5-7 years for maximum risk reduction--although she did say there are no absolutes and no two patients are alike. But she was fine with me quitting at 6 yrs 3 mos. A recent decade-long study from the U. of Vienna reported that more than 7 years of endocrine therapy had more risks (cardiac, osteoporosis) than benefits.
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yes my doctor is thinking five years but we will have to see what happens. He seems so sure that it will not come back because of the size of the small tumor. And no node involvement. technology changes so we will see. They also say that letrozole, after a person stop taking it, still gives protection to the body for a few more years. Not sure if it changes the DNA or what but I’ve read that more than once and the dr know this from studies that have been done.
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Perhaps letrozole's residual beneficial effect, even after discontinuation, comes from its having built up in the adrenal glands and adipose tissue sufficiently to continue to prevent the aromatase pumped out from the liver from acting as the catalyst for converting the androgens they secrete into estrogens; by the time these letrozole stores have been depleted, the aging adrenals and adipose tissue no longer secrete enough androgens to be converted (and perhaps the liver can no longer make enough aromatase).
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thank you. I knew there was some medical explanation. As long as it works and apparently it does!
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How long does swelling last after surgery? I only had an lumpectomy + SLNB (2 nodes) but I'm scared of getting lymphedema because I'm quite overweight. I'm about 5 weeks from surgery and now that I'm not so focused on the soreness/pain in the breast and armpit, I'm noticing my bra feels tighter on the operated side still, and bulges out more in the armpit area (where the bra band goes) --- the area where I'm assuming SNLB was done (one incision in breast) is still tender and lumpy and occasionally gives me pain when I stretch, that seems to be close/around the area of swelling.
Could this be lymphedema already or is this just post-surgery swelling? How long does it take for surgery swelling to go down?
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Mumuriri, I don't recall about the swelling from the SNLB but that damned site is still annoying 8 years later. While I didn't gain weight, I got flabby in that area and had to get the next size larger in blouses, t-shirts etc because the armholes rubbed the incision site. I had a separate site for the SNLB. Do discuss with your oncologist about ways to prevent lymphedema. It is vital. As you guessed, being heavier apparently puts you more at risk. But we all are at risk. Five weeks though isn't that long for your body to heal from the "assault" of surgery. It can take a year for everything to find its new normal. Heal well!
HUGS!!
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Hello,
In January 2023 I will have completed two years of Letrozole. I will see my oncologist then. I had a DEXA scan this week because he said after two years of Letz I would have one done. I’m upset. The hospital has a new DEXA scan so it does the lumber spine and each hip. There has been some degeneration. There are two numbers where they say the change is -15 and -13%. That doesn’t sound good. I am wondering if I should stop taking letrozole. I’m 69. If I stop taking it, it shouldn’t impact my survival rate very much. Also the DEXA said the 10 year FRAX Percentage is 15%. Not all of the numbers had minuses, but a couple of them did. I sent a message to my doctor, but being the weekend probably won’t hear till Monday. Just wondered what other people have experienced. Thank you for your time.
I was a stage 1A. No lymph nodes we’re taken out. Just had lumpectomy andradiation and then Letz.
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Hello,
In January 2023 I will have completed two years of Letrozole. I will see my oncologist then. I had a DEXA scan this week because he said after two years of Letz I would have one done. I’m upset. The hospital has a new DEXA scan so it does the lumber spine and each hip. There has been some degeneration. There are two numbers where they say the change is -15 and -13%. That doesn’t sound good. I am wondering if I should stop taking letrozole. I’m 69. If I stop taking it, it shouldn’t impact my survival rate very much. Also the DEXA said the 10 year FRAX Percentage is 15%. Not all of the numbers had minuses, but a couple of them did. I sent a message to my doctor, but being the weekend probably won’t hear till Monday. Just wondered what other people have experienced. Thank you for your time.
I was a stage 1A. No lymph nodes we’re taken out. Just had lumpectomy andradiation and then Letz.
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SpringDaisy, haven't you been taking Fosamax or some other bone protecting medication? I took it for 5 years while I was on Arimidex. My MO hadn't even prescribed it when I first started Arimidex - I had to remind him. Then I moved across the country and got an excellent MO. I had no problems taking Arimidex nor Fosamax and would have taken it longer if my MO had recommended it. He did not. I did have lymph nodes removed but all were good. My DEXA scans stayed about the same. I would talk with your MO and see what you can do to protect your bones and if he thinks you should stay on letrozole. I was 69 when diagnosed and stayed on Arimidex until I was 74. Now 77. Good luck with whatever you decide. HUGS!
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SpringDaisy, haven't you been taking Fosamax or some other bone protecting medication? I took it for 5 years while I was on Arimidex. My MO hadn't even prescribed it when I first started Arimidex - I had to remind him. Then I moved across the country and got an excellent MO. I had no problems taking Arimidex nor Fosamax and would have taken it longer if my MO had recommended it. He did not. I did have lymph nodes removed but all were good. My DEXA scans stayed about the same. I would talk with your MO and see what you can do to protect your bones and if he thinks you should stay on letrozole. I was 69 when diagnosed and stayed on Arimidex until I was 74. Now 77. Good luck with whatever you decide. HUGS!
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I have been taking a calcium supplement that my oncologist told me to get from the pharmacy and it’s called calcium 500 MG plus D.
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I have been taking a calcium supplement that my oncologist told me to get from the pharmacy and it’s called calcium 500 MG plus D.
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hello everyone! I'm new here and diagnosed less than 2 months ago and am 43 years old. I just had my first consult with a surgical oncologist and I'm freaking out because I'm not sure based on the research I've done what kind of surgery/treatment feels "right" for me. I'm hoping to hear about experiences/opinions from some of you who have gone through something similar (I realize everyone is different). But I have some pre-existing chronic medical conditions that seriously effect possible treatment for me. For example, I'm ER positive, but will likely be unable to take hormone blockers because years ago I was already put into chemical menopause in order to treat my endometriosis. The side effects were not just unpleasant but caused permanent damage to my bladder and nearly killed me with severe bladder and kidney infections.
I'm stage 1 and the mass is 1.5 cm, and my lymph nodes look clear so far on ultrasound. So obviously the surgeon is recommending lumpectomy and radiation. Which seems straight forward, however I likely can't take the hormone meds (I may not even be able to stop taking my birth control pill because it helps control my severe endometriosis symptoms). I also have a vestibular disorder and chronic migraines which can be heavily effected by meds.
I'm also concerned that I have smaller breasts (B cup) and I'm already asymmetrical, with the tumor being in my smaller breast. So I'm very concerned with the lumpectomy shrinking that breast further, and then radiation shrinking it even further to the point where I look disfigured, bras not fitting properly, feeling very upset about my appearance, etc. Then I've heard so many stories of not getting clean margins and having to go back in and take even more tissue. And I'm not clear from my research about whether mastectomy decreases your recurrence risk more than lumpectomy or vice versa...
I would really appreciate hearing some of your personal experiences with lumpectomies and radiation especially from women with smaller breasts, and how it changed your breast over time, if you had to have additional lumpectomies, and if looking back you would have made the same decision or instead opted for mastectomy, or really any info you'd like to share that you've learned through your journey that you think might help. Again, I understand that we're all different and our bodies react differently to things. I'm just trying to gather as much info as possible in order to make a decision that fits me personally. Thanks so much!
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hello everyone! I'm new here and diagnosed less than 2 months ago and am 43 years old. I just had my first consult with a surgical oncologist and I'm freaking out because I'm not sure based on the research I've done what kind of surgery/treatment feels "right" for me. I'm hoping to hear about experiences/opinions from some of you who have gone through something similar (I realize everyone is different). But I have some pre-existing chronic medical conditions that seriously effect possible treatment for me. For example, I'm ER positive, but will likely be unable to take hormone blockers because years ago I was already put into chemical menopause in order to treat my endometriosis. The side effects were not just unpleasant but caused permanent damage to my bladder and nearly killed me with severe bladder and kidney infections.
I'm stage 1 and the mass is 1.5 cm, and my lymph nodes look clear so far on ultrasound. So obviously the surgeon is recommending lumpectomy and radiation. Which seems straight forward, however I likely can't take the hormone meds (I may not even be able to stop taking my birth control pill because it helps control my severe endometriosis symptoms). I also have a vestibular disorder and chronic migraines which can be heavily effected by meds.
I'm also concerned that I have smaller breasts (B cup) and I'm already asymmetrical, with the tumor being in my smaller breast. So I'm very concerned with the lumpectomy shrinking that breast further, and then radiation shrinking it even further to the point where I look disfigured, bras not fitting properly, feeling very upset about my appearance, etc. Then I've heard so many stories of not getting clean margins and having to go back in and take even more tissue. And I'm not clear from my research about whether mastectomy decreases your recurrence risk more than lumpectomy or vice versa...
I would really appreciate hearing some of your personal experiences with lumpectomies and radiation especially from women with smaller breasts, and how it changed your breast over time, if you had to have additional lumpectomies, and if looking back you would have made the same decision or instead opted for mastectomy, or really any info you'd like to share that you've learned through your journey that you think might help. Again, I understand that we're all different and our bodies react differently to things. I'm just trying to gather as much info as possible in order to make a decision that fits me personally. Thanks so much!
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Hello mouthy model,
I had a lumpectomy. Mine was stage1a. No node involvement and clear margins. Every case is different as you know. I read it’s not true that mastectomies are always a better option. That certainly would be up to you and your oncologist. I had radiation like usual, and then was prescribed an aromatase inhibitor. It will depend on what your team tells you. Good luck. this is a wonderful site to be on.
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Hello mouthy model,
I had a lumpectomy. Mine was stage1a. No node involvement and clear margins. Every case is different as you know. I read it’s not true that mastectomies are always a better option. That certainly would be up to you and your oncologist. I had radiation like usual, and then was prescribed an aromatase inhibitor. It will depend on what your team tells you. Good luck. this is a wonderful site to be on.
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Hi mouthymodel,
Let me comment to your questions with my own experience.
My tumor was not palpable, discovered via mammogram. From that mammogram I already knew I had at least one involved lymph node, maybe more. Frankly, I was initially terrified, but put my research into identifying a good surgeon.
My surgeon was outstanding, and having examined all of my history told me that a lumpectomy with follow up treatment would be as effective as a mastectomy. He answered every question I had thoroughly, and his style is to partner his patients with the best oncologist and radiation oncologist, all working together for the patient. I met both of them right after surgery, but before treatment, and I found. both to be outstanding. So I was greatly assured I was in great hands, and that I would have a good treatment plan.
Many of your same concerns were mine, but they didn’t happen.
- I was Stage II, with one lymph node, but had clean margins
- my surgeon was skilled in oncoplastic techniques and cosmetically my breast looked outstanding. One could not tell that I had surgery, yet a fair amount of tissue was removed
- my breast size and shape did not change from the radiation
- the medical oncologist did an extensive analysis, devised a plan for an AI, but with alternatives if needed, and monitored me closely. Fortunately I had no major side effects, and I had a couple of big immune system diseases already, one of which had put me into premature menopause. But my oncologist was outstanding in coordinating my care.
I am four years into my recovery and still see my medical team today. For me, having that highly knowledgable and involved team was the key.
I suggest that you make a summary of your questions and issues, take it with you to your surgeon, and get the answers you need. See if you can do similar with a medical and a radiation oncologist. The more you know, the more prepared you can be. If your doctors don’t give you a feeling of confidence, get other opinions until you get the best people for you.
I used this website extensively as well as referrals to other doctors and other patients.
Wishing you confidence in your research and your decisions.
Josie
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Hi mouthymodel,
Let me comment to your questions with my own experience.
My tumor was not palpable, discovered via mammogram. From that mammogram I already knew I had at least one involved lymph node, maybe more. Frankly, I was initially terrified, but put my research into identifying a good surgeon.
My surgeon was outstanding, and having examined all of my history told me that a lumpectomy with follow up treatment would be as effective as a mastectomy. He answered every question I had thoroughly, and his style is to partner his patients with the best oncologist and radiation oncologist, all working together for the patient. I met both of them right after surgery, but before treatment, and I found. both to be outstanding. So I was greatly assured I was in great hands, and that I would have a good treatment plan.
Many of your same concerns were mine, but they didn’t happen.
- I was Stage II, with one lymph node, but had clean margins
- my surgeon was skilled in oncoplastic techniques and cosmetically my breast looked outstanding. One could not tell that I had surgery, yet a fair amount of tissue was removed
- my breast size and shape did not change from the radiation
- the medical oncologist did an extensive analysis, devised a plan for an AI, but with alternatives if needed, and monitored me closely. Fortunately I had no major side effects, and I had a couple of big immune system diseases already, one of which had put me into premature menopause. But my oncologist was outstanding in coordinating my care.
I am four years into my recovery and still see my medical team today. For me, having that highly knowledgable and involved team was the key.
I suggest that you make a summary of your questions and issues, take it with you to your surgeon, and get the answers you need. See if you can do similar with a medical and a radiation oncologist. The more you know, the more prepared you can be. If your doctors don’t give you a feeling of confidence, get other opinions until you get the best people for you.
I used this website extensively as well as referrals to other doctors and other patients.
Wishing you confidence in your research and your decisions.
Josie
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