26 years old and just diagnosed with IDC
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On your insurance question: insurance will cover your single mastectomy and I believe you have a right to symmetry, so insurance will cover the second mastectomy as well. Given your age and dense breasts, I would think it would be certain you can have coverage for both mastectomies.
The medical oncologist will discuss whether you need chemo, and whether it will be before surgery or after, on January 7. In the meantime, try to stay busy, watch Netflix, take walks, whatever helps, and ask for Ativan from your doc if you need it. This is the hardest part- waiting.
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I’m already on lexapro for anxiety but now it’s not doing a thing to help. My gyno prescribed me some Ativan for a leep procedure I have to have done on Jan 10th and I’m saving one for that day but I’ve took one two days ago and it really seemed to help a lot. It made me so sleepy though but I think I might as for it and maybe just take half a pill instead of a whole one daily because my lexapro is just not cutting it anymore since I’ve been dealing with this
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hray, here is my suggestion for using your waiting time. I had ovarian cancer and had a couple of weeks wait before surgery, and what I did was prepare for when I knew I would be physically unable or not feel like doing things for a while. Clean and clean stuff out. I live alone and was afraid that would make things hard when I came home, so I cooked and prepped and froze a lot of stuff to make ready to heat or easy to throw together and heat meals. You may not be able to drive for a while. Take advantage of using this time and get busy. You will feel less stressed later, and in the mean time, working and being busy will make you feel better and keep you occupied
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that’s an amazing idea! I definitely need to declutter my house for sure. And get my family closet set back up so it’s easier for my fiancé and boys with laundru
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Do things with an eye towards: I will not be able to lift things that weigh more than a few pounds for a while, or use my upper body for a while. This even includes things like carrying grocery bags and vacuuming. Take care of the cobwebs and things requiring working over your head. Stock your pantry-carrying heavy bags from the store will be out. Even things like bottles of detergent may be no-go because they exceed your lifting limit
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hray i was triple neg also. I took Taxotere and carboplatin, and Taxotere was the hair risk. I think red devil was my alternative chemo that included one that had heart issues.
If you have TNBC, ask what subtype they think you have. There are several subtypes that act/respond differently. My MO thought I was likely to be basal-like and for basal like tnbc carboplatin is a very good chemo. There are new TNBC drugs all the time and there may be others they think of. If you elect to get a 2nd opinion, there are TNBC experts in the country (Tiffany Traina, MSK; Melinda Telli, Stanford).
You might ask if they plan to test AR (androgen receptor). Mine was tested and it was high. That suggests some follow up chemos if the first one is not working.
For me Taxotere/Carboplatin worked very well and was not too bad (for chemo!). I tolerated it well.
You can look up Dr Valter Longo and his info on fasting. I did his "fasting mimicking diet" prior to chemo and it really helped the side effects be milder.
If you have a lump you can feel: look up hyperthermia. Aka HEAT. I did a lot of heat on my tumor. Cancer does not like heat. You want the tissue to get to about 109. (A super hot hot tub is 105). I had some superficial burning (turned my skin bright pink) but nothing permanant from using a very hot hot water bottle. One hour at 109 is intolerable to cancer. I did this 2-4 x per week.
DO IT ALL. TNBC is a nasty cancer but it is HIGHLY killable-- and if you kill it, your odds of having no future issues go up to 90%. I can almost guarantee you will start chemo first, given the TNBC.
I got a second opinion from an integrative Oncologist who made a lot of recommendations to me. Later, I saw a naturopathic physician with an expertise in cancer support who helped me a lot. High dose vitamin C by IV can be very good against cancer stem cells.
When you get your plan in place and know what is happening it will get less anxious.
Ativan is commonly prescribed for chemo. I was handed a scrip without asking! I do not suffer from anxiety so I did not need mine, but I know it is a good one.
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hray, Look for a support group in your area—some cities have breast cancer support groups. I think someone else mentioned contacting the American Cancer Society. You mentioned that you are at a university hospital. Often, there are support and informational programs through hospitals.
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how would I go about finding a support group in my area?
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santanarbarian , do you know is the red devil supposed to work better or is it just different treatments based on people’s risk factors
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My MO told me on the east coast red devil is pretty standard for tnbc but that recent studies indicate carboplatin is very helpful for basal like TNBC. I think the two approaches are pretty equivalent. You are very young and you need to consider your LONG term health and quality of life alongside what will get rid of the cancer.
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yes that’s what I’m trying to think about. I know heart problems/disease already runs pretty high in my family so it’s probably best to avoid the treatments that would increase the risk of that.
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hray - SLOW DOWN. Everyone is giving you good advice, but you're spinning. You're started a ton of threads. I get it - you're scared and lonely. I also get that men want to fix things, and your fiance can't fix this. And yes, no one really understands who hasn't been there. So you're right - maybe stop talking to all of them. Or pick only 30 minutes a day that your share with them. Keep a running list of all your questions and choose only one or two to talk about at a time.
Call your doc and ask for referrals to groups in your area. Or call your hospital. Or check out the NCI or American Cancer Society. Go buy Dr. Susan Love's Breast Cancer book and work your way through it. Someone gave me a copy when I was first diagnosed. Lots of good answers & ideas there. And comforting to have a book in hand with an index and references for what kinds of groups to call & where to reach them.
https://www.barnesandnoble.com/w/dr-susan-loves-br.../
Many of the answers your looking for are already in threads on this site. Take the time to slow down and read. None of us can give you better answers until you have a more thorough diagnosis. And waiting is a bitch. But you can do some research. Adriamycn? Taxotere? You can read about all the side effects of each on the chemo threads. Melissa had a great idea. Read some of the chemo tip threads and you can start preparing.
Exercise. Walk & then walk some more. Too cold? Join a gym or go to the local YMCA and exercise. If you keep your body in good shape, everything will be easier. And it should help clear your mind some too.
From your running list - do your research now and as the time gets closer for your appointment cull it down to a few major areas. Docs don't have unlimited time to explore every thought so you'll need to have a fairly concise outline of the questions you have left.
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"DO IT ALL". No, do what you feel is right for yourself.
There are three paths you can go down. You get to decide which is best for you.
There is straight up conventional medicine, which is evidence-based and supported by the medical community, including surgeons and medical oncologists.
There are complementary treatments, which are non-standard therapies that are used in conjunction with conventional medicine. Some of these treatments help patients cope with the side effects of conventional treatments, and some are taken for specific anti-cancer benefits. Therefore any particular complementary treatment may or may not be supported by your doctors, but certainly there are practitioners you can see (who ideally are recommended by your doctors) who can assist with these therapies.
And there is alternative medicine, which are treatments taken instead of standard evidence-based treatments.
In her posts, Santabarbarian has started to mix conventional medicine and complementary treatments. I think it's important that you understand which is which, particularly as you head into your discussions with your care team. Hypothermia, for example, is currently being investigated for potential benefits in treating cancer, but your doctors might be very much against self-administration. Fasting certainly has been shown to have health benefits, but I would not advise fasting prior to chemo without the approval of your medical team. There are a slew of supplements that you can choose to take, in recommended or massive doses, some of which your doctors will encourage and some of which might cause them concern. There are dietary changes that your doctors will support, and some that they might question.
You need to decide for yourself how much out of the mainstream you want to go, and whether you want to stay with treatments (conventional or complementary) that are fully supported by your medical team, or if you want to take the advice of non-medical practitioners and others here, such as santabarbarian, who are have gone down the complementary path far beyond where most patients, and doctors, go. You might choose to do that as well, but if you do, you should be aware that this is what you are doing.
This website has forums for "Complementary And Holistic Medicine and Treatment" and "Alternative Medicine". It was my understanding that it is preferred that discussion of complementary treatments remain in the Complementary forum so that there is no confusion.
Edited to Add: Further to MinusTwo's post, my additional piece of advice is that you get your medical advice from your doctors. My goal in posting here is to provide you with information to help you get the most out of your discussions with your doctors. They are the experts, we are not. What you are getting from us here is personal advice and opinions. Lots of it will be very helpful as you make your treatment decisions, but those decisions need to be made in conjunction with your doctors and primarily based on their advice.
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Beesie: 1. You do not need to be such a scold. First, I did absolutely nothing without the knowledge of the very experienced, careful doctors in charge of me. Yes, I went a lot further than many people do in terms of complimentary practices, but I did nothing self-designed or risky. TNBC is its own animal and a fairly aggressive approach (what I meant by "Do it all"-- be aggressive, stay fit, eat well) IS warranted -- as it (unlike many BCs) CAN be gotten rid of for good, if you get a KO in round one. 2. It's HYPERthermia, not hypo. Read about it. Vets use external heat all the time on animal tumors. ZERO danger and potentially a very great benefit. Also, it is free! My ultra conventional MO had absolutely no problem with it. They have Hyperthermia depts at UMD, Cleveland clinic and Wash U if you want to read up.
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I think when we hear the word 'cancer' for the first time our minds automatically think every cancer is like the super aggressive ones like pancreatic where they are caught quite late for various reasons, and kill quite quickly.
Breast cancer isn't like that, even for those of us in the late stages. I was where you are three months ago, wondering if I needed to consider moving home, if I had time, etc. It took six weeks from initial mammo/US/biopsy appointment to actually meeting my oncologist, then another two weeks before I got the anti-hormonal injection (10 day delay due to misunderstanding/miscommunication at the first attempt to inject) and I finally FINALLY started the drugs a month ago. I believe my breast tumor did grow a little bit over that time, but its gone down considerably both due to shutting off my hormones and the first course of drugs.
After the first weeks of shock I was able to calm down as I realized I wasn't going anywhere fast, and I used the weeks up to the oncology visit to inform myself about potential approaches. So when he said 'CDK 4/6 inhibitor' I knew what it was, the reasoning, how it was administered, and that it was the correct first line approach. I was prepared for potential side effects based on what I read here, and made sure I had stuff in the house for management. I took the time to just cry it all out and told my partner I didn't expect him to solve the problem, I just needed him to let me cry. So he did. I told him when I was feeling scared, and he acknowledged it, but we both knew it was me and me alone who ultimately had to face the actual procedures and pills.
What I haven't done yet: joined a support group, considered complimentary therapies, decide what I'm going to do at progression, get my affairs in order. There will be time enough for that - getting through the diagnosis and starting treatment was more important than worrying about things in the medium term. You don't have to do it all right away and you can't fast forward through the next 6 or 9 months, or the rest of your life. Take it a day at a time and give yourself a limit on when you think about cancer, and don't forget to actually live!
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Sondra - ABSOLUTELY - "don't forget to actually live". Good post.
hray - all of us have particular things we believe will help or not. Really - do buy Susan Love's book. It will give you a place to start with all of the three paths that Beesie mentions. All have some good points and there is likely no 'magic bullet'. You'll have to come up with your own combinations that suit your needs & your life style & your particular diagnosis. Edited to add - as Beesie says - you should coordinate all of these with your docs.
Personally as I've stated before, I believe in moderation and it works for me. Some exercise every day but I don't train for marathons. Some wine every day but I rarely have more than one glass. Some desserts, but since I like salty more than sweet that's not every day. Increased veggies but I don't pay for organic. Less red meat but that's because I like fish & chicken better. As SONDRA said - 'don't forget to actually live."
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santabarbarian, my apologies for the typo on Hyperthermia. Usually my system highlights typos for me but didn't do so on that word. I am well aware that hyperthermia may have benefit in treating cancer and in fact said so in my post. I merely suggested that hray's doctors might not appreciate if she self-administers without prior approval, which I thought was prudent advice given the specifics you provided about how you self-administered, followed immediately by telling hray to "DO IT ALL".
I am well aware that TN breast cancer is aggressive. What makes hray's situation particularly unique is that she is only 26. Given her very young age, and given that her cancer is 5% ER+ and 20% PR+, I would not presume to know how her doctors will approach her diagnosis and treatment plan. I understand that your cancer is TN, but you are more than 30 years older than hray, so the considerations and recommendations may be different in her case. Or may not be. The point is that we can't possibly know, which is why I, and most of the others commenting, have been trying to answer hray's questions and help her prepare for her January 7th appointment with her doctors without getting into specifics.
hray, as others have said, you do need to slow down. I appreciate how difficult that is - it's hard to think about anything else and you want this all to just get moving. But you can't develop your own treatment plan, even with a lot of well intentioned advice. And you don't want to get yourself too far down a path, only to find out that your doctors are on a completely different path or have strong objections to where you are headed.
Educating yourself and learning about the different options and possibilities can be helpful, just don't commit yourself to (or against) anything yet, not before you've had even a single discussion with your doctors. Other people's opinions and what they did may be interesting, but may not be appropriate for your situation. So use reliable websites for your information. There is lots of information on this website and other sites such Mayo Clinic, cancer.org, and the NIH/NCI site. One site I'd recommend is the NCCN Guidelines site. These are the gold standard treatment guidelines used by most cancer facilities in the U.S.. Here is the link to the physician's version of the guidelines: https://www.nccn.org/professionals/physician_gls/default.aspx#breast There is also a patient's version but there is much less detail. You need to register to be able to access the physician's version but registration is easy and it's definitely worth it, for the amount of information that you'll get.
Personally I think the best advice came from Melissa. There is lots that you can do now to prepare yourself for whats ahead that has nothing to do with treatment options. And yes, with a fiancé and two young boys at home, don't forget to live!
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The great thing about this board is to find a LOT of info and differing points of view.
Hyperthermia HAS a very strong benefit-- well proven-- and no downside, IF your tumor can be easily reached by the heat, which can for sure be tricky in certain parts of the body. (Teaching hospitals do not build entire units and staff them up for therapies that do not have a proven benefit.) The big question is how to get the heat to 'tricky' areas. If you heat up the entire body there are some definite risks like with any high fever. But a spot treatment is not dangerous. The three places I named are all conventional cancer treatment facilities and all have programs in administering heat as a cancer therapy. I talked to the head of hyperthermia at UMD. He was exceedingly nice.
Hray is an adult who can hear multiple people's ideas and choose for herself what possibilities she wants to research, ask about, or ultimately do. I think differences in treatment approaches can be talked about, and chemo patients can be made aware of things that can amplify the effect of chemo or reduce its side effects. I agree completely that the guidance of a trusted MO is very important, but it is also important to find one whose approach is one the patient can embrace, given that MOs differ.
You may have a bias against an integrative approach (different than complimentary in my mind), and that's fine-- but I assure you there was nothing "woo woo" or dangerous about anything I did. Everything I did alongside chemo had a great deal of solid evidence behind it and was arrived at with the advice and support of my medical team. My situation was dire at diagnosis... I knew the "down the middle" conventional approaches would give me a 30% chance of being alive in 5 years. I wanted better odds and sought out info on how I could up my odds with medically-validated integrative measures. People who want down the middle have an easy time getting it. People who want something more need others to share what they know.
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hray - as I mentioned & as you can see, we all have our own thoughts & ideas.
You have a lot more reading to do so you can determine what you want to ask your doc. But you shouldn't get too focused on a specific plan before you even MEET the doc. Have a list of questions, but go prepared to listen carefully - before you start questioning.
It would be useful to either take someone with you to take notes or ask if you can record the conversation. There's so much emotion involved we can't always remember what was said.
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Thank you everyone for all your advice. I've been at work so haven't been able to really dig into it but I appreciate it. Maybe everyone is right though. Maybe I am posting too much and asking too many questions. Maybe I do need to just process what I know without adding more questions. I feel like I'm just getting on everyone's nerves with my questions. I thought it was just my family because they haven't really accepted it and I felt like this was a safe place I could ask as many questions as I wanted but it seems like people on here are agreeing with my family that I need to slow down and just focus on what I can control right now. So I guess I will do that. Thank you everyone for all the advice y'all have given me since I've been on here. This site is the only thing that's made me not go crazy this whole time. But it seems like now is the time to quit with the questions. I'll take everyone's advice into consideration and do some research and some thinking and trying to live without letting this consume me. Maybe I'll post again once I meet with my doctors. I appreciate everyone that took the time to respond to my questions. It means so much to me.
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Hello, hray. I think I would try to get the genetic testing ball rolling now, so that you and your doctor could have results available at your meeting. If you contact the doctor or nurse navigator, they might be willing to refer you to the genetic counselor who can order testing. Because of your age, I would expect them to order it, and I would want a full panel not just BRCA alone. If a genetic mutation is implicated it could affect your choice of surgery and the choice of which chemotherapeutic agents to use. For example, BRCA-associated cancers are known to respond well to carboplatin. Also, again because of your age, I would expect a breast MRI to be ordered. Can they get that referral started? I am looking at ways to expedite your treatment.
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Thank you so so much Shetland Pony! That’s is a great idea and maybe I’ll feel better once I can get the ball rolling on SOMETHING. All this waiting is killing me. Maybe I can get a stronger anxiety medicine soon too and that will help me a lot I think. I really appreciate that suggestion about the genetic testing. I didn’t realize I could get that started on my own without the doctor
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I will also ask about the breast MRI. I’d like to have as many results as possible before the meeting. I was told when they scheduled it that they would determine further testing then but that just means more waiting so I’ll take your suggestion and try to get it going now
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hray: I do not think you are asking too many questions at all. Or are being overly anxious. To deal with this at 26 is almost unimaginable. You are amazing. I think you are receiving way too much advice. And I feel that us on BCO should do better. You have received some great advice. What we forget is that this is a process, both emotionally and medically. You need to take one day and one step at a time. You need emotional support, and some knowledge and advice. But so much info at this point could be totally useless for your situation and only cause additional stress. Especially when posters disagree. Set goals for each day and ensure practical tasks such shopping and prepping for recovery is included. Not just searching for answers. You are not responsible for needing to apologize for anything and I am so sorry you feel that you are annoying. Cancer at 26 gives you every right to be annoying. Which you are not! Keep up your zest for knowledge and your fight
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TB90, thank you for that. It makes me feel so much better. I feel like I have to know everything there is to know or my doctors won’t take me seriously since I’m so young. So I guess that’s why I’ve had so many questions. I’m a researcher and the way I deal with things is to know every little detail about them. I’ve always been that way my whole life. It drives my family crazy lol but now this is something serious so I guess I feel like I need double the information now to tackle it and not be treated like some little kid by my doctors
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hray - you're always welcome to post here & no one is upset. I suggested getting Susan Love's book so you can see a logical progression. Of course your questions are scattershots everywhere - as would happen to anyone new to the disease. But reading each area of the book will likely help you focus so you can pursue your research in an organized manner. That way you can delve more deeply into all the related issues - diagnosis, stages, grades, chemo, surgery, rads, etc. I'm a researcher by nature too and this book was really a helpful way to get started & stay on track.
I liked TB90s idea of setting aside a certain amount of time each day to research & prepare - and then move on to something else.
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hray
I agree with TB90, I don't think you are asking too many questions at all. Seems to me that some tend to forget these boards are here for that purpose, to ask questions, share info, get advice, and just be in an environment where people have been there and get it. I say ask away, those who feel you're asking too much have the option to not respond if they want.
I just wanted to tell you that I was first diagnosed at 27 years old in 1999. It was almost unheard of back then. It shocked my doctors so much that the pathologist called my surgeon to validate my date of birth as he thought there was an error. My original diagnosis wasn't as aggressive as yours, but I made it 19.5 years cancer free before developing my new primary this year (not a recurrence, a new primary BC).
I was TERRIFIED when I was first diagnosed, as diagnosis, treatment, decisions, etc. are often much different for younger women. Heck, they didn't really know HOW to treat me. There was much debate on my tumor board. Ultimately however, I had treatment, and got to a point that cancer didn't consume every thought. You are very early in this process, and the waiting is the hardest part. Once you have more info and a treatment plan, you'll find that your mind will calm a bit. I see your're taking Lexapro, ask your doctors if they can add an anxiety med such as Ativan or Xanax for those times where your mind is in overdrive and the panic/anxiety is at the forefront. It really does help.
(Hugs)
Tracy
**Edited to add that treatment protocols for young women have come a long way since I was first diagnosed. They have defined treatment and support protocols specifically for young women that account for not only treating the cancer, but things like preserving fertility if the patient desires that.
Oh, and definitely find ways to stay busy. I had an excisional biopsy on 12/7/99 that led to DX, then a lumpectomy and axillary node dissection on 12/22/99 to get clean margins and determine stage. I waited until the first week of January 2000 for pathology results and staging. I think my husband and I played hundreds of games of Monopoly an Multi-player Solitaire over those weeks.
This time, I had months of tests before surgery. I went to work as usual, did my kids activities as usual, and went on a planned vacation during the wait, all to stay busy.
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hray1993 My two cents. I layed in my room and read posts for about 2 months, before the fog lifted and I started to function normal. It's ok, don't let anyone tell you its not, you need to deal with it how you want. Your friends and family just don't understand. I don't read much, but Men are from Mars Women are from Venus was an awesome book. Women like to vent, but men don't like to listen, they think they need to "fix" the problem. I found my girlfriends and these forums the best for venting. Not my husband and I don't really go for support groups or therapists, but that's me, follow your gut. Although my friends were overwhelming so I shut them out for a while, hopefully they understand. I reached out to a few people privately on this forum that I felt I identified with, similar dx, to ask questions. I don't have TNBC, but from what I've heard they will probably expedite your treatment once you meet with them and suggest chemo. Regarding treatment options, Stage (I through III) doesn't matter as much as other factors like estrogen/HER2 status, node involvement and lymphovascular invasion, determined after surgery. I'm still not clear what stage I am as there is new protocol involving estrogen status. My stage doesn't match what I've read. I've had a lot of problems with mistakes in my reports and misinformation from my doctor. Push for double mastectomy if you want it, I did, regardless of genetic testing results. Mine came back negative, but I still wanted the double. But I heard some organizations won't do it, so I would ask right away their philosophy. You'll probably go for breast MRI as standard. Other testing is tough to get, unless confirmed spread. I fought for CT and bone scan. Pet is the hardest to get. I think AC and T chemo is standard on east coast for TNBC, but I'm not an expert. I thought treatment was pretty standard, but found in the process there are many gray areas and different opinions. Get another opinion when the time is right for you. Node removal is controversial. Some doctors take out more than others based on lymphedema risk. This freaked me out for a while, but felt better getting chemo and radiation. Don't be surprised if it is in your nodes, even if the testing was negative. But I don't mean to worry you, this also doesn't mean worst case scenario. It may be in small amounts. My doctors didn't prepare me properly for it. Reconstruction options can be overwhelming, try and read up before making a decision. I wasn't properly informed before surgery. I was in a lot of pain in the chest area after surgery, but my arms were pretty functional and I could take care of myself. I drove after one week. I won't get into Onctotype, since it seems it won't apply to you, but there are gray areas in it and differing opinions from well respected doctors. My nurse told me no vitamin C and certain other supplements during chemo as they may interfere with chemo, also apparently controversial with differing opinions. I also had precancerous cells on cervix 25 years ago. That is easily treated and should not be a problem. Lunesta is my best friend for sleep. I was taking it before dx. It is extended release, while Ativan and Valium is not. I'm an OCD Engineer and am very detailed, but also very skeptical of limited data. You can find NCCN Guidelines that doctors use online. I had to register to get them. I was not properly informed by my surgical doctor, who is all I saw for 2 months. I'm glad you are meeting with a team right away. But I hope the delay is due to the holidays and not the norm. Catch 22. Easier to meet with one person but I didn’t get the info I needed.
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Tracy, you making it almost 20 years without any new breast cancer when treatment for you was so limited back then gives me much hope. So sorry you had to deal with it again. I’m hoping by doing the double that may chances are greatly reduced for chance of recurrence or new breast cancer forming. Thank you for giving me some hope.
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JRNJ, I thought I was handling it well. I was ready for the news and I was in such high spirits but this week has just been very rough for me and I’m not sure why. I’m so angry and bitter and I don’t even know why. I’m very short tempered with my rowdy boys and I hate that but I know that is because my anxiety is not under control with all this going on. Hoping I can fix that soon and start to feel a little better. How does the breast MRI show if it’s spread? I understand it would show spread through the breast but for peace of mind I'd like a full body scan. Everyone keeps saying don't get ahead of myself with that but that's what I want. I'm a what if person and what if it didn't travel to lymph nodes but traveled to other parts of my body? I want to make sure it's no where else. I feel like they aren't going to want to give me a full body scan
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