Lumpectomy Lounge....let's talk!
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Me, too. You don't need lymphedema. Fingers crossed
Sorry you are so uncomfortable
HUGS!
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I need to whine - my bone scan scheduled for 10 AM today was canceled due to tech calling in sick. Up at 7:45 for nothing. And this postpones followup with MO set for Monday.
Some days the stars are just not in line. Today must be my day.
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what is this Oncotype dx that some of you have mentioned?
I had a lumpectomy with lymph node biopsy on Monday. I’m doing well. I required some pain meds the first couple of days, but just sore now. Tired of wearing a bra 24/7, but it feel better than just being “free”!
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RobinJ3024 - the Oncotype DX test is a genomic test appropriate for early-stage invasive breast cancer/estrogen-receptor-positive patients who have no cancer in their nodes. It can be helpful in determining whether or not to include chemotherapy in the treatment plan (in addition, of course, to an endocrine therapy - either tamoxifen or an aromatase inhibitor). The test analyzes the tissue removed during lumpectomy (which has been kept "on file" by your BS) and calculates the risk of distant recurrence of cancer and also the efficacy of chemotherapy on reducing that risk. Built into the test is the assumption that the patient will be taking tamoxifen. (For those of us post-menopause, we are on aromatase inhibitors which, my MO said, are much more effective for us.).
The Oncotype DX is typically ordered by your Medical Oncologist when you meet to determine your next steps after lumpectomy and, if appropriate, radiation. Here's a link to more information about the test: http://www.breastcancer.org/symptoms/testing/types...
In a bit of remarkably good timing for those of us who were having the test done at the time, just a couple of weeks ago, results of a major study, the TAILORx study, were released. This helped those of us whose Oncotype DX score fell within the range studied by TAILORx make our decisions. http://www.breastcancer.org/research-news/oncotype...
There is another genomic test which is similar to but different from the Oncotype DX test and which some MOs prefer. http://www.breastcancer.org/symptoms/testing/types...
The best things for you to do now:
Talk to your surgeon and to your MO. If you have a patient navigator or nurse navigator, consult her/him! They can be great at helping you connect the dots and deciding who answers what question.
Follow this topic on this site: https://community.breastcancer.org/forum/147/topics/865009?page=2#idx_45
Read these articles linked above. And come here for lots of information!
Keep us posted.
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I'm new here. So overwhelmed. It feels like I need to get a medical degree to understand everything coming at me. I had my lumpectomy and sentinel lymph node biopsy last Friday. The margins were positive for some cancer, so my surgeon says we have to have another surgery in two weeks to take out some more. She has ordered the Ocotype and Mammaprint tests. She didn't make much of it in our post-surgery meeting, but I was freaked out last night to discover that my cancer is Grade 3. Is there any way I can avoid chemo with that?
Also, I am getting lots of loving friends telling me that I should just opt out of traditional medicine and go for lifestyle changes and natural supplements. People have sent me books like "Heal Breast Cancer Naturally" and "Ketogenic Diet and Cancer." I have two friends who both beat BC with radical lifestyle changes. But I read things in the natural remedy materials that contradict each other. Still, a lot of what the anti-conventional medicine people say makes sense to me, and it is making me lose confidence in doing chemo and radiation, but I just have no idea what to do. I'd be so grateful for advice and counsel from those of you who have already gone through this phase.
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BarbinLA - I sympathize with you, as will everyone else here. I was diagnosed in April and although I'd rather expected a BC diagnosis at some point in my life (family history, 43 yrs of biopsies), it was a pretty big shock nonetheless.
And I had NO idea how to navigate this thing - who to call first, how to proceed, what to learn/what to ignore, whether or not to share (and with whom and how), and so forth.
Coming here and finding topic threads that are appropriate to YOUR situation, starting threads when you can't find one that fits, "favoriting" topics and sending private messages to people on this site with whom you have something in common (like pathology/stage/etc.) All will help.
I am impressed that your BS ordered both tests. My BS discussed it with me but said that it was the purview of my MO (he did order the OncotypeDX and it did help me make my decision). I was told that insurance may not pay for both the Oncotype AND Mammaprint but that might have been just my insurance.
Don't freak out - that's another piece of advice I have. Keep that stress level down and when not-such-good news comes, like Grade 3, learn about it. We can't tell you whether or not you can avoid chemo (it might be the best route for you depending on everything that goes into these decisions). But DO DO DO talk with your Medical Oncologist! He/she will be your best resource. My MO's office has been awesome. I have a direct line to my MO's medical assistant. I call, leave my pre-organized list of questions (I keep it succinct so that she's clear on what I'm asking) in a voicemail. Without fail, she calls me back that day or first thing the next day with full answers and with time and willingness to discuss and listen.
If you have a patient navigator or nurse navigator assigned to you by your screening center or your BS's practice UTILIZE this. She/he will really be a huge help.
It is really important to remain focused on YOUR cancer. And understand it as much as possible. I feel sometimes like a walking encyclopedia on ER+/PR-/HER2- single receptor IDC... and I'd never heard of it before April! Don't get bogged down with anything irrelevant. It'll distract you.
Advice from other people: In order to protect my sanity, I ORDERED friends and family NOT TO MAKE ANY SUGGESTIONS for diet, supplements, treatment, docs, or anything else unless I specifically ask an individual for such info. (My list of "mentors" I can count on 2 fingers.)
Second order to friends/family - at the risk of sounding rude, I TOLD THEM ALL that I will NOT listen to or read anyone else's breast cancer stories. Nope, I don't want to hear about their mother's sister's aunt's own breast cancer. Irrelevant to my situation and my story. I have to remain focused on MY disease, MY treatment, MY future.
I don't think I've ever been as fiercely self-protective before in my life. But it pays off. Everyone has been very well behaved.
In my humble opinion, relying on "natural" remedies at the exclusion of western medicine is insane. I lost a cousin and a best friend to that route. Count me as a skeptic when it comes to the efficacy of any fad diet, whether it's Keto, Paleo, or anything else.
Your Medical Oncologist will have a dietician/nutritionist on staff and she/he will be of enormous assistance.
Finally, at the risk of violating the "no suggestions" rule...if you'd like the names of 2 cookbooks with were were written by cancer-focused nutritionist/dieticians, let me know. I'll private message them. Very informative and helpful and delicious!
Stay in touch with all of us. We're here to help.
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Oh, ChiSandy! What a bummer - and not what you needed at this time. Sending you my wishes for a swift recovery from your injury.
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hey BarbinLA
I was also recently diagnosed. Just had a partial mastectomy 3 days ago. I too am receiving an overwhelming amount of advice. It's so confusing. I think what I've decided is to trust my doctors, but to also go with the plant food diet/natural foods etc. I figure conquering from both angles will give me best results with no regrets later. Maybe having a healthy body will make the medical treatment not as bad. All I know is the "medical route" is saving most women. Not sure I'm ready to take a gamble.
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Thank you so much! There is great counsel in what you sent. I will take time to reflect on it.
And yes, thank you, I would be grateful for the cookbook recommendations.
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BarbiinLA - I was Dx this spring and just finished my accelerated 16 radiation. I, too, wondered, and still wonder, what all this radiation and hormonal meds will do to my body. The fact is, I had a tumor and I needed to get it out. Now, I need to make sure there are no rogue cancer cells floating around my body, and the hormonal meds and the radical lifestyle changes are the only reassurance. So my view is you need to do BOTH conventional and alternative medicine to make sure you didn't leave any thing out. Dr. Kristi Funk's book, Breast, really helped me understand the process. I also combine Keto diet and Raw diet to her theory, which is mostly plant based, to make sure I am starving the cancer cells to death. And also exercise, and lose weight if you are over weight. You can do everything possible, but cancer can still come back. And when they do, they comeback with a vengeance.
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BarbinLA, Welcome! You are definitely in the right place for answers. I do recommend that you read Dr Susan Love's The Breast Book. It tells you everything about breast cancer. It is not unusual to not have clear margins. Good that your MO is ordering an Oncotype Dx and Mammoprint. The results will help you and your medical team decide what is next. Take time to breathe. It is so very hard in the beginning because none of us knew what we didn't know. But we all learn quickly. Do take advantage of all the resources here on this site.
HUGS!
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I need to get past the stage where I'm crying all the time so I can think clearly.... When does the terror stop?
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Barbi - There are many positive things going for you. Just cry and vent for as long as you need. After, you will gain strength and courage to fight this and you are going to win this battle. They don't call us BC survivors for nothing. Prayers your way and we are here if you need anything. Wait for the Oncotype and the Mammo testing. If it comes back low, chemo doesn't have a lot of benefits, unless you are very young, they may still suggest you do it. Every BC is different. You need to follow your instincts.
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BarbInLA, it does get better. Once you know your treatment path it is easier. It is the unknown that is so difficult. But do go ahead and cry. We all do. We didn't want to be here yet here we are. You will find the most remarkable, supportive, informative women (and men) here. And that helps immensely. We can help you know what to expect with most treatments, how to cope. And of course there are forums here for most everything from chemo to drinking (as in for it)
Check them out. I find this group is my "home." I've made such great friends here - some even in real life. I hope you will, too.HUGS!
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BarbinLA, you asked, so here are some book suggestions - not fad diets. Just print this out and set it aside until you are in the mood for it. Don't overthink this part of it. You have bigger things to deal with right now. Once you have a chance to catch your breath, then you can move on to food.
The first two books are both cookbooks and books about food & cancer specifically - really helped me with understanding WHY certain ingredients are really important when it comes to reducing risk of recurrence or dealing with meds and radiation. I don't overthink things, though. I just cook really healthy, primarily plant-based (vegetables, dark greens, asian mushrooms, fruits, whole grains, beans beans beans...) meals. Easy, too - much easier than people think.
The Cancer-Fighting Kitchen, Second Edition: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery by Rebecca Katz et al.
Amazon Link: http://a.co/bjNges0(Rebecca Katz's blog is great too - https://www.rebeccakatz.com/welcome-to-my-connecti... )
Cooking through Cancer Treatment to Recovery: Easy, Flavorful Recipes to Prevent and Decrease Side Effects at Every Stage of Conventional Therapy by Lisa A. Price and Susan Gins
Amazon Link: http://a.co/7oSC92IThe book that turned my eating life around (and helped me reverse prediabetes and knock down my cholesterol including my LDL) - it's big and long, but it's really entertainingly written and very well researched. The author doesn't espouse any particular diet or anything - but favors as much of a plant-based eating regimen as possible; he's mostly plant-based but he acknowledges that sometimes a person needs to have a little pepperoni pizza now and then. I had my doctor look at the book and he read a few pages, checked the footnote and gave it his approval. Don't let the title fool you - everyone's going to die. I figure this helps me avoid hastening my demise by eating stupidly! I liked it so much I also downloaded the digital version because it's easier for me to search.
How Not to Die: Discover the Foods Scientifically Proven to Prevent and Reverse Disease by Michael Greger M.D. et al. (There's a summary available but it's not worth it. Better to buy the book.)
Amazon Link: http://a.co/fEHAORVDr. Greger - the author of How not to Die - also has a website and does entertaining, short, informative videos and columns on all kinds of food/health research and issues. Nutritionfacts.org
A magazine - monthly, but absolutely readable (and short) and informative and eye opening. Not cancer-focused, but science and objectively focused on the truth of food and health and research. I look forward to every issue and love the recipes. Nutrition Action Healthletter (published by Center for Science in the Public Interest) https://www.nutritionaction.com
Another good blog with wonderful recipes, Minimalist Baker https://minimalistbaker.com ("plant-based recipes requiring 10 ingredients or less, 1 bowl, or 30 minutes or less to prepare"). I follow her on Facebook and subscribe to her emails and I swear, when I see each new recipe, I want to go make it right away. I haven't tried everything, of course, and some I have to mess with because I can't have added sugars (and that includes coconut sugar, agave, honey, maple syrup, etc.) so I sub a lot but every recipe has been delicious.
Bon appétit. And keep us posted. Trust us, the worst time is when you're waiting and uncertain.
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BarbinLA- the second surgery is called a reexcision. I had mine 2 weeks from the first one. Its easier to find the spots where the margins were not clean. They go in through the same spot, less pain as no nodes this time. I was not intubated, they use less drugs, and it's a quicker surgery.
Wishing you a quick recovery and totally clean margins!
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ChiSandy, Life is never boring at your house! Hoping the trip for the wedding goes well and that your arms heal without any more challenges-- your tolerance level is surely being tested along with your coping skills. Been there and done that with both the bra and bathroom issues and was greatly relieved when both were over so glad you're only having to deal with one of them.
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Thanks, Beaverntx. R arm is healing nicely—driving was fine, only shifting was a bit painful—but L wrist is still a problem child. But can easily dress, groom and feed myself ambidextrously again
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Good to hear, ChiSandy. We usually don't realize how much we depend on being ambidextrous for those things until something interferes!
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BarbinLA, just saw your initial note. Do not despair over a Grade three--which means that particular tumor was growing aggressively-- and it is mostly gone and likely will be gone after your reexcision. My tumor was also grade three; it's gone, Oncotype said no chemo and radiation is done. I'm moving into follow-up mode less than six months from diagnosis. As others have said, we all have different experiences but also much in common. Glad you found us.
Re advice from others, for me I find it best to read as much as I can absorb and then ask my oncology team questions as well as to learn from those who post on these threads.
Good luck as you continue on your journey.😊
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Had my surgery a week and a bit ago. Basically a partial double mastectomy. To be honest, it's been a breeze. I am driving and reaching for things easily. And sleeping on both my sides!!!
My dilemma now is that I am "supposed" to have RT , which I really don't want. They removed the whole tumour with large margins and there was no sentinal node infiltration. In my mind, this thing is now over and gone. I know that radiation is supposed to mop up any cells drifting/ lying around, but surely, if there were these cells around, they would not be in my breast anymore, but could be in my big toe by now! So why radiate the breast now? A bit like closing the door after the horse has bolted. Another concern is the potential damage to my heart and lungs, and long term possible risks of leukaemia or another cancer. My take is that I definitely need to make some lifestyle changes in terms of diet abd exercise (not negotiable) and closely monitor my health in the future. My gut told me something was wrong initially when I found the lump, and my gut is telling me not to go for radiation or hormone therapy. The doctors however, have other ideas and a standard treatment protocol to follow. Any ideas?
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Gem63, Welcome! To begin to answer any of your questions we need to know a lot more about your diagnosis. What stage? Why both breasts? How old are you? Have you had an Oncotype test? Please, fill out your profile, then go to SETTINGS and make each and every thing PUBLIC so it will appear after each post. There are way too many unknowns about your individual BC to answer now.
HUGS!
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Thank you, Patsy B, for posting all that information. I have ordered all the books and will work my way through them. I have already made huge changes in my diet, but I was clinging to some animal proteins. Maybe time to let them go for now at least.
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Happy to help, BarbinLA. Do check to see if your oncologist has a dietician on staff - mine was enormously helpful in recommending an anti-inflammatory eating regimen/lifestyle. I also just attended a terrific discussion/cooking demonstration for a group of breast cancer survivors and the entire event centered around fully plant-based eating. The more you learn, the less you want to eat animal products. (I eat fish/shellfish a couple of times a week; yogurt or cottage cheese maybe 1-2 times a week; and I'm eliminating oils in favor of fat-containing whole foods - those are 3 biggies for me.) There is a TON of information out there - just google it.
Best of luck!
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Hi Gem63 - I'll second what PontiacPeggy said: if you can add your diagnosis, pathology, surgery, and other information to your profile and make sure that it's set to Public, we'll all be able to help you with more informed input appropriate to YOUR cancer. Every cancer's different - just look at my info and PontiacPeggy's and nonomimi5's information: each of us unique.
Because my tumor was very small (but invasive) and was found early, I had a choice: mastectomy OR lumpectomy + radiation. They are equivalent approaches for situations like mine but ONLY if radiation is used in conjunction with the lumpectomy. I was fortunate in that I fit the bill for brachytherapy (in my case, the SAVI device was used) which applied radiation from within the cavity left by the surgery. 2 times a day, 5 days, and that was it. But if I had not qualified for the short/targeted radiation, I'd have done the conventional external just to be sure that all that tissue was treated. I'm not messing around here - I wanted it gone. I am lucky in that I have a great deal of confidence in both my RO and my MO and that helped me make my decisions.
I've been on a very healthy largely plant-based diet for some time now, but can't control everything with lifestyle. It's a crapshoot, I figure. What we don in terms of lifestyle, in my opinion, is to lessen the risks; we can't avoid them altogether. So for me, and I speak ONLY for me, radiation was a given; chemo was a choice (it offered me a 3% improvement in risk of recurrence, not enough, so I am not having chemo).
But you have to make your own decision in consultation with your surgeon, Radiation Oncologist and Medical Oncologist.
Keep us posted and do share your information in your profile if you're comfortable doing so.
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Hi Gem- I’d be interested in better understanding your cancer by seeing your stats as well. But I can tell you that I’ve felt the same way as you. I also had a lumpectomy with partial mastectomy, clear wide margins because of all of the tissue that was removed, and no node involvement. For me, radiation was also presented as an insurance policy and added a very small reduction in my reoccurrence rate. I feel that side effects of radiation outweighed benefits and I said no. I’m looking into starting Tamoxifen in Aug since my tumor was ER PR +. It’s weird to write that it WAS those characteristics. But it’s true, the tumor is gone now 😊 Wishing you a speedy recovery and gentle hugs to you.
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I have a reconstruction question. I had a Lumpectomy April 30 this year and my BC breast is already getting a little smaller and perkier than my healthy breast. My Dr suggested I can lift the droopier healthy breast in 6 months when the BC breast settles down. Did anyone here do any reconstruction on the healthy breast to make it look even? I heard it is an easy procedure, is it?
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Hi nonomini- I had reconstruction (reduction/partial mastectomy) on my right at the same time I had my lumpectomy and reconstruction on my left by my PS. My BS and PS worked together during the surgery. My right one became less swollen much quicker and the scars are healing a bit quicker.
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nonomimi, I will have a L reduction & lift after I lose a little weight to facilitate symmetry—that is, unless I need orthopedic surgery on my L wrist first. (Long story—check my posts history).
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nonomimi5,
The plastic surgeon will be working with my breast surgeon to even out and "lift" my good breast. I figured at my age, and if my insurance will pay, i might as well get something positive out of this whole ordeal.
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