If you have just been diagnosed....
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Hi, Becky ~ I'm so sorry about your diagnosis, but glad you've found BCO!
The info' at the bottom of our signatures may include any of all of the following info' at the member's discretion: the type of bc we have -- IDC (ductal) and ILC (lobular) are the two major types. It might also indicate a Stage (0, I, II, III or IV); a Grade (1, 2 or 3, which refers to aggressiveness), if we had positive lymph nodes (that's the 1/16 or similar number), the hormonal status ER +/- and PR +/- and the Her2 factor, which is also either + or -.
Each of the above factors into a woman's treatment (tx) recommendations, and showing them here helps us recognize the similarities of our diagnosis (dx). The pathology report from your biopsy (bx) will include some of this information, but some will not be available until the pathology report from your lumpectomy.
Hope this helps! Also...very important... When you first join BCO, you are limited to 5 posts per 24 hr. period, which is done to prevent scamming. There is also a Private Message (PM) feature that does not have limits. To access it, click on any screen name or avatar, and it will take you to a page with that feature. Just didn't want you to get shut out after 5 posts, which happens to many of us the first day. Deanna
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Hi,
This is my first post. I was diagnosed on 1/5/11 with IDC. Size is 8mm, grade 2/3, ER/PR+, HER2-. I found out I am BRCA1 positive. I am having a bi-lateral mastectomy with expanders tomorrow. They will also take out some lymph nodes.
I am wondering if I will need chemo and radiation. I am fine with the surgery, but afraid of chemo!
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slinky, radiation will be determined by how close you margins are after the bi-laterak mast. I had a lumpectomy so radiation was a given for me. Have you Dr. run the Oncotype test on your tumor. This test helps to determine if you need chemo or not. If your score comes up low chemo isn't needed, gray area they don't know if chemo will help or not, high score chemo is needed.
I'm so sorry you have to join the group no one wants to be a part of. That being said there are many people here with way more knowledge than I. My thooughts and prayers will be with you tomorrow. I would also suggest you go to the IDC thread.
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So I am now on to day three of recovery from a bi-lateral mastectomy with TE's. I had surgery on 1/4, not 1/5...I have been making alot of mistakes like this since I was diagnosed with BC!
Pain is managed with the rx's that were given and eating bland, high fiber foods. Adding miralax to my flavored water has really helped with keeping the system moving. I had the sentinel node biopsy and seven nodes taken out. So far they looked clean, but nothing official until next week. The pain from my ribs hurt the most...maybe because I have an aneasthesia ball connected to my chest. Once the ball runs out, the chest will be in pain (so says my doctor). I am doing better than I thought I would.
I am glad there is somewhere I can go that will let me share this experience - not everyone wants to hear about cancer. Heck, not everyone wants to be around once you tell them you have cancer. Yet, there are people who will come out of the woodwork to stand by and support - thats awesome!
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Becky, I found the thread abbreviations for newbies extremely helpful for translating some of the abbreviations in posts, it is usually listed in active threads.
Slinky and Becky glad you found us, I am pretty new to this journey as well, justbstarted my Chemo yesterday. Chemo will probably be determined by node involvement. There are great support threads in this site for all aspects of treatments that are very helpful.
I found a good reference book to be beneficial it can be a bit overwhelming at times to see all the side effects but I am a believer in knowing what is coming and being ready for it. I use Dr.Susan Love's The breast book, 5th edition and found The Breast Cancer Companion A Guide for the newly Diagnosed very helpful. It is designed as a planner/workbook. Whatever you use you want it to be recently published as there are new developments every year.
My first BS(breast surgeon) scheduled an MRI and PET scan to confirm that was the only site involved but not everyone does right up front.
Hope this helps,
Jean -
I am still waiting for my biopsy report. Dr. appt on 10 FEB 11. The worst part has been waiting to hear the results. Your sit and read and go crazy and hope it's all good. If not it properly better when you have a game plan.
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lynniea - you are right about the waiting - it is the worst part, but just know that EVERYONE has that same feeling, you are not alone. Waiting was the worst for me. Once you have a plan in place you will feel a huge weight lifted from you. Good luck to you.
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lynniea ~ Yes, it gets much better when you have a game plan and are taking action! In the mean time, be careful what you read on the internet. Most studies are based on treatment done 5, 10 or more years ago (to get 5 & 10 year outcomes), and things have changed a lot in recent years with the advent of a new generation of chemo drugs, Herceptin (for Her2+ bc), and newer reconstruction options. Be sure whatever you read has a very current date, and keep this lag time in tx vs. outcome in mind.
Also, as you may know, 80% of biopsies turn out to be benign. I haven't looked at your earlier posts, but depending on what you've already been told re. Birads rating, the odds may still be in your favor that you don't have bc, and hopefully that will be the case. (((Hugs))) Deanna
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Lynniea...
I am right with you. I had a biopsy of the breast on Friday after biopsies under arm came back positive. I don't go back to the Dr. until the 10th. I feel very much in limbo at the moment. I feel like "ok, we know it's cancer, so let's go...let's start treating it".
I just found out Friday and after two days of tears I am feeling more positive and ready to start asking questions. Reading posts on here it seems like there are so many options and so much research I have to do myself beyond finding an oncologist (I have only dealt with the surgeon so far). I wish I could feel more comfortable thinking the doctors will know where I should go for help and which treatment option will be best, but sometimes I'm not even sure about that.
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jenn_h ~ I'm not sure why you're worried about finding doctors you can trust, but one thing many of us on BCO have done is get 2nd and even 3rd opinions before deciding on surgery and a treatment plan. Also, if there is an NCI-designated cancer center near you (even within a few hours), you will find all the specialists you need (breast surgeon, oncologist, radiation oncologist, plastic surgeon and more) functioning as a team, under one roof. Here's a list of those major cancer treatment centers:
http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html
And if one isn't close enough to be convenient for actual treatment, you can often go once for a consultation, then take that information back to more local doctors you like. You can also start a new thread here, asking for oncologist (or breast surgeon or plastic surgeon) recommendations in your specific area.
We all deserve positive doctors we feel good about and are confident about trusting with our care and future health. If you have any doubts, keep looking! (((Hugs))) Deanna
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Thanks Deanna!
I live in a very rural area in NW PA. Our hospital is not known for the best care, however does have a new cancer center. I will probably opt for either Roswell in Buffalo (about 1 1/2 hrs away) or UPMC in Pittsburgh (about 4 hrs.) The doctor that I have all dealings with right now is the surgeon who I trust completely. I just wonder if I should be looking for an oncologist now ar if I wait to find out results of recent biopsy (which is Thur). I hate the sitting around and waiting, it feels like I should be doing something and getting on with this...
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Jenn, one step at a time. Unless they've told you (as I was told) to "be prepared for a cancer diagnosis," looking for an oncologist sounds premature to me, since 80% of biopsies turn out to be benign.
Not saying your local cancer center isn't wonderful. It might well be. But keep in mind that a "Cancer Center" or "Breast Center" sign on a building is not the same as an NCI-designated cancer center, where they will have extensive experience with all types of breast cancer (we're not all the same), as well as being up on the latest surgical techniques (because they teach it), and having the most advanced diagnostic equipment. I sort of found this out the hard way (see my bio), which is why I'm not shy about voicing my opinion when it comes to the importance of finding a great medical team.
Also, just wanted to give you a heads up on the limit of 5 posts within a 24-hr. period rule that applies to new BCO members. So you'll want to use your 5 posts judiciously, but you can also send a private message (PM) to me or anyone else here by clicking on their screen name or avatar, if you don't want to run out of posts for the day, which can be very frustrating. Deanna
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The worst is the waiting. I had my biopsy on Thursday and have an appt on 10Th Feb. Sure hope he will call before. I think maybe when you know either way and can have a game plan. I am with you I feel like I am wasting time. I know God has this all in his hands. There are others who are worst off than I am. Stay positive and take one step at a time.
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Hi, I was diadnosed abour 3 weeks ago, I know I don't know as much as I should but I went kind of brain dead for a while. what I do know for sure is that I have 3 tumors in my left breast, 1 is benign the other 2 are cancer one is not spreading but the bigger one is aggressive.
I have two doctors one said that the agressive one is about a milimeter the other said it's about 8 cenimeters, either way I have to have a mastectomy but I am scared about the 2 different sizes and I am not sure what doctor to go to.
well I am scared and crying all the time but for now I am blaming it on the two different diagnoses. I can't afford to run around getting more opinions but I have to make a choice and soon.
the doctor that tols me it was 8 centimeters put me on estrogen blockers and melatonin the other doc just wanted to schedule surgery for the next week so again confused, any help or advice would be great.
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The waiting is awful I feel for you a lot and not that you want to hear advice now but a mistake I made was not asking for a copy of my pathology report. I am praying for the best for you but get a copy anyway it will give you peace of mind. Knowledge is power.
I will be thinking of you
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Marylou--the time between being diagnosed and having a treatment plan in place is one of the hardest. My recommendation is to get copies of all the paperwork so that you have on file for later--the pathology reports are key as they explain pretty much everything. You won't have any final pathology reports until after surgery. Sounds like you have some pretty conflicting info from both Docs--hope you get that resolved and can make decision. It is very true when people tell you that it does get easier---it does--especially once you have the plan in place and know what is happening--not knowing is the worst. Take care.
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Marylou, absolutely get a copy of your pathology report! Then come here and we will help you understand what it says. There isn't a lot of difference between 8mm & 1 cm (which is what I think you probably meant), and if size was determined from imaging or a biopsy, it's just a best guess-t-imate until it's removed.
I'm surprised that one doctor didn't mention surgery. Even if what you are dealing with is entirely DCIS (which is a non-invasive breast cancer), normally a lumpectomy would be recommended -- unless a biopsy possibly got it all with good margins??? (Sorry, but I'm trying to read between the lines to understand your situation, and I may be confusing you more!)
Anyway, please call your breast surgeon's office and ask for a copy of your biopsy report so that we can help you better understand your situation.
Also, don't be alarmed at having more than one lesion. It's not uncommon and does not make your prognosis any worse. I actually had 4 lesions. It's referred to as multifocal or multicentric bc, depending on who close the lesions are, which also determines if you need a mastectomy (if spread out within your breast) or can possibly go with a lumpectomy (if small and close together).
Where are you being treated? Is either doctor you mentioned a breast surgeon? That's the type of doctor you need.
And, yes, many of us go into shock at the news. It's totally normal and will get much better as soon as you find doctors you like and trust and can get your treatment started. (((Hugs))) Deanna
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I found this article to give you an idea of 'size'...
http://breastcancer.about.com/od/newlydiagnosed/ss/tumor_scale.htm
Monica
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Hi girls, i just wanna pop in and let you you know, You can and will get through this, i finished chemo 3 months ago, i was on AC x4 and then Taxol x 12, i have my first 3 month check up next week. My heart goes out to all of you, this is a wonderful place!!! i have lots of tips and things ive learned, please Private Message me if you wanna chat and ill send you my number. i cant tell you how many girls reached out to me, i dont know what i would of done without this board, our motto is
you dont have to be brave, you just have to show up,chemo is doable,there is a lot of things out there to get you through it now a days
love and hugs
Chey
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This is an amazing and inspiring movie. It changed my life. Here's to your health!
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The post by "Mommy76" is SPAM. That member has posted the same link in 3 other BCO forum (probably 4 others by now). The link goes to a video -- actually, a movie -- that promotes "Gerson Therapy." Therefore, "Mommy76" is promoting the therapy, and his/her post has been reported.
If you want to know more about "Gerson Therapy", here's what the American Cancer Society has to say about it on their website:
"Gerson therapy requires following a strict low-salt, low-fat, vegetarian diet and drinking juice from about twenty pounds of fresh fruits and vegetables each day. One glass of juice is consumed each hour, thirteen times a day. In addition, patients are given several coffee enemas each day. Various supplements, such as potassium, vitamin B12, pancreatic enzymes, thyroid hormone, and liver extracts, are used to stimulate organ function, particularly of the liver and thyroid. Sometimes other treatments such as laetrile may also be recommended (see Laetrile).
"Treatment is usually begun at an inpatient clinic over several weeks. The Gerson Institute does not own or operate any medical facilities and istead it refers patients to clinics it licenses. Currently the only licensed clinic is in Tijuana, Mexico. Clinic fees often exceed $4,000 per week. Treatment may last from a few months to 10 years or more. It is generally recommended for at least 2 years in cancer patients. The Gerson Institute also offers a home therapy package."Anyone who is still interested after reading what the ACS said about it might want to stop by the "Alternative Therapy" forum. I think they've discussed Gerson Therapy over there.
otter
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Just diagnosed on 2/10/11 and scared isn't even coming close to describing how I feel!!! I cry more than ever - and I am a crier - just so much now....My legs go numb and I've decided that other than this sight - I'm staying off the internet - everything I read has given me a death sentence and again - there goes the legs!! I found a lump in my left breast and since the biopsy I have had pain in my breast and now my arm(left). Is this normal?? I go to my first surgeon Wed. then I have another appt. next Tuesday at a "specialist" I pray that the outcome is better than my fears!!! I have said - no matter what I have to go through to fix this - lets just do it!!!! I'm not afraid of the treatment or surgery - right now - I am afraid to leave this earth with unfinished business - mostly being my family - husband and children!!! Any posistive advice would be greatly appreciated!!! God Bless us All - stay strong Ladies - I'm trying to...
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TAR423, I agree that maybe you should stay off the internet -- except this site -- until you get more information from your upcoming appointments, because it sounds like you may not have enough information yet to understand what you're reading. DCIS is non-invasive breast cancer. It cannot kill you. Yes, it needs treatment. And it's a terrible shock and scare to get a bc diagnosis no matter what the type! But DCIS is by far the best scenario, and if you are finding things that say otherwise, please stop researching for now!
Did you get a copy of the pathology report from your biopsy? And are you seeing a breast surgeon (not a general surgeon)? And what type of "specialist" are you seeing?
Let us know what other questions you might have. I know it's very tough and surreal at first, but you will get through this! (((Hugs))) Deanna
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Tar...until you have your full diagnoses, you need to try to stay as calm as possible. I know the waiting is the worst. There are a lot of variables before you can even entertain the thought of a death sentence. Stage, grade, ER/PR status, HER2 status. Lots of thing come into play. Even if, god forbid you do end up a stage 4. There are survivors on here with stage 4 cancer who have been around for many, many, many years. Like 15,20 & even 25. So be patient, be strong and know we are here for you whenever you need us. This is a great place, lots of support. More than likely there will be someone here going through the exact same thing as you. We are here for you. Come any time, ask any thing. Good luck. God Bless (((HUGS))) Leisa
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My pathology report says.....Invasive Ductal Carcinoma, nuclear grade 3.....and even tho this is now my only site to visit - the others are just DOWN!! And the dates are from 2007 which I know, we have come a long way since even then!! Thank you so much for the encouraging comments!! I really need them - I worry on a regular basis and my husband gets upset but this - this is driving me crazy!! waiting - thats the issue - not knowing - thats another - and my arm really hurts!! Oh and my back muscle hurts - probably due to the way I am holding myself but my thought - of couse - is....OMG - is it spreading!!! Since I know - now - I feel like I need to take action this instant for it might spread and eat all my organs by next week!! I really am not well when it comes to worry
My next week appt. is at Sloan in NYC.....
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TAR43 - the waiting is the WORST and I don't know of one person who has said anything different than that. What I can tell you is that once you have all of your facts you'll be able to form a treatment plan and move on, no matter what. I was diagnosed in October 2010 out of no where, huge shock. Once I had a plan in place it was like a huge weight was lifted off of me.
I don't think anything is spreading right now, so quick and that you can feel. I think it's because you're anxious. I remember my BS telling me that now every little ache and pain I feel I will attribute to cancer - and she was right! I've calmed down a lot about that now.
This site has been amazing - the women on here have a wealth of REAL information. Good luck with your journey. (((HUGS)))
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Tar....talk to your Doc about something that may help anxiety. It is hard to believe right now but it does get easier once you have more info and a treatment plan in place. When I was diagnosed, I then started feeling all aches and pains. Doc did say that stress is at all-time high so you could be holding lots of stress in your back. Take care, Rachel
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Thanks Oakley...great dogs!! I hope that the fear of aches coinsiding(?) With cancer will subside. When I was told..less than a week ago...I really thought I would just throw up and really..everytime I get "in that place" its an overwhelming fear. Th is site has sooo brigh tened my spirits..given me hope and I am just plain thankful I came across it....can't tell you how much better I feel after seeing so many similiar posts and the outcome looks good!! Thank you all for sharing...it makes such a difference to those, like me, who are still in the dark...thank you!!!
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Hi TAR,
We have a lot in common. I was diagnosed on 2/10 as well. I have had a few diff. diagnosis on type stage and stuff. I don't seem to be the typical case (which is just so me!). To make my long story short I agree with you about the waiting, it was so awful, I cried for a cpl days...now my friends cry and I laugh at them and say, "I'm so over that, you are too!" You would not believe the relief I felt after the plan was set into action, or at least agreement...I started chemo today...it went great. I feel really good right now, just have a slight headache...God doesn't give us more than we can handle and they need somebody to give them all their research results so here we are...we're gonna make it!!
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Tar, I also have felt every ache and pain and worry that something MORE than than the lump that was breast cancer is at work. I had a sore shoulder for awhile, even before diagnosis, and if I hadn't found the lump would have gone in to have the shoulder checked out. It seems worse since the lumpectomy. All these little twinges. I have my path report but have not seen an oncologist. I have two scheduled next week, along with a post-op with surgeon. Waiting for a call from the radiologist but guess that won't happen until Monday. I hate the wait! The more I learn (from other sites-I quit doing that!) the more questions and worries I have. I decided I am going to see my family doctor next week too just to get some reassurance I guess that the rest of me is okay, even if my breast is not. Like everyone else, I just want a plan. I want to get started so I am closer to finished!
Kristy
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