So numb and cold - I received my preliminary dx this afternoon.
The preliminary findings of "abnormal cells" is now cancer. I have an appt. with a breast surgeon tomorrow morning. She will go over my full pathology report with me and discuss the lumpectomy.
A couple of questions:
1. What should I be asking her?
2. Is there a thread or forum where people can meet other breast cancer patients that live in their area? I would love to talk to some women who also live in NYC.
Right now I'm just really worn out from all the phone calls I've had to make to family and friends. Hearing their reactions have been so devastating. I don't think I have the strenghth for any more.
Comments
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So sorry. I have been exactly where you are and I can tell you that you are definitely going through the worst of it right now. Once you sit down with your breast surgeon and hear everything she/he has to say, you will feel more in control. It's the unknowing that is the absolute worst. When I visited my oncologist a month ago she asked me what the worse part of this whole ordeal was for me. I told her it was not the surgery, but the waiting for test results. The worrying because you don't know what is ahead of you. She said she hears this all the time. As for questions, I don't think I had any when I first met my breast surgeon. She explained everything so clearly that I left her office knowing what the best plan was going to be for me. My husband came with me which was good. If possible, you could bring someone along to just be moral support and another pair of ears. You will get lots of support on this website! Try to stay positive and please keep us posted! Good luck! -
Thank you. My husband (who, very luckily, is a happy-go-lucky person) will be there with me tomorrow. I know that I know almost next to nothing right now (other than the size of my tumor; 1.7cm), but I just hate my breast right now and I want it gone. -
GraceBer, we're sorry that you're dealing with this diagnosis, but glad that you're here to get advice and support from this wonderful community.
The main Breastcancer.org site has a list of Questions to Ask Your Surgeon that will help you prepare for your meeting tomorrow.
There's a forum for Get Togethers, where you'll find a longstanding thread called New York, New York around a NYC-based group that started meeting in 2009. Or use the Search function to look for others who are in NYC, or perhaps at the hospital where you're being treated.
Best wishes, and please let us know how your meeting with the BS goes tomorrow.
• The Mods -
I know how you feel! I just received my Dx also today from the Radiologist that performed by Biopsy last Friday. I told a few ppl last week & earlier today I had my Biopsy. I haven't told anyone today but my mom & husband of the Dx. Mine is also about 1cm which the Radiologist said was good, but could not tell me anything else like what stage or what type of Breast Cancer. I have to wait to see the Breast Surgeon for add'l info. I made phone calls to different Breast Surgeons the Radiologist referred me to , but the office was closing so I have to wait and call back tomorrow. By the way, I live in Manhattan. .... -
Grace,
I am in NYC also...usually the doc or the nurse will explain everything to you.
you can ask your ER, PR and HER2 + or -
grade
Ki67 %
some doc will straight out tell you radiation and chemo and some won't. depends on who you get.
i strongly suggest you to get a second opinion. i saw two, and one was being very upfront and aggressive about how she's going to treat my cancer. i was very uncomfortable. the one i choose was more systematic. she would not say what treatment she'll do. but she did tell me bc i am ER+ so i'll be getting hormone therapy the Tax...?? can't remember the spelling. and i did ask her based on her personal experience, what stage i was after i did the MRI which the cancer "diffuse" in my breast. she said stage 1 or 2 with a optimistic nod. the nurse also told me if i were HER2 +? then i'll take the chemo which doesn't cause hair loss.
i wish you the best.
june -
MsRocky,
did you get your path report? mine tells me what kind of cancer...IDC and DCIS... -
MsRocky - what a sucky Monday for us both. The BS I'm seeing comes highly recommended, but I should probably put a list together for 2nd opinions.
Thank you for the information, juneping. I will be sure to ask her about all those things. -
Grace, I'm sorry you been diagnosed.
You had just a fine needle biopsy, correct? If that's the case, it's likely that the pathology report will have very little information, so don't expect much. You hopefully can find out if the preliminary finding is DCIS or invasive cancer (but if it's DCIS, this could change once a larger sample is analysed) but it's unlikely that you will have information on the grade or ER, PR status. Certainly they won't know HER2 status or Ki67% and those may not be relevant anyway if your diagnosis is DCIS.
As for treatment, it's not likely that your surgeon will have any idea, and frankly with such a small sample, the surgeon shouldn't say anything yet because there is so much you (and he) don't know.
At this point I'd suggest that you focus your questions on what to expect for your upcoming surgery. Don't jump too far ahead yet. -
So sorry you've had to join us. But you have come to a good place for support and advice.
In addition to forums, you might want to find out about BC Support Groups. Most hospitals have one (or more). The local chapter of the American Cancer Society should have information about ones in your area, too. And if you don't like the vibe of one group, try another.
The support group I joined really helped me with the emotional aspect of my journey. We had quite a few women who were 8, 9, 10 and more years out from their dx. Seeing them healthy & thriving years later really helped me get over some of the fear I had. And after my treatment, I could help others who had questions about specifics of their diagnoses that I had in common with them -- and treatment experiences (Herceptin, hormonal therapy, etc.) -
Thank you, Beesie. Yeah, that does make sense that a FNA wouldn't provide all that much information.
I have to be up in 4 hours for my appt. and I can't sleep. -
Hugs Grace- sleepless in Manhattan. It is a lot to take in but you are in a great place to get information, vent and just feel safe that people share your experience.
From my situation- My surgeon went through what the "next steps" could or would be based on what they knew at that point. I just knew it was not confined to the duct but was a small non-palpable mass found because of new calcifications. She explained about having a lumpectomy and sampling lymph nodes- how it happens and how long it takes. I asked about a mastectomy and she said it was my choice but based on what she knew at that time breast-sparing surgery could be appropriate and she was optimistic to get clear margins without disfigurement. Then she sent me home to digest it all and decide what I wanted to do. Questions like when can you be scheduled/what hospital or surgery center? stuff like that is all appropriate. I did not get into any of the radiation or medical oncology stuff til after surgery.
I noticed you said you had fine needle aspiration- you could ask if they plan on doing a core or excisional bx or do they know enough to move to other surgical options.
Get some rest even if you don't actually sleep- knowing there will be a plan and you are going to decide how that plan goes takes a lot of the anxiety away- Keep us posted on how your visit went. -
I found out this morning when making the BS appt that the Dx is Ductal Carcinoma. I don't know anything else. My Primary doctor called afterward & said they couldn't tell me what stage or anything else until I have another test of something? I'm trying not to freak out & remain calm but I feel myself about to burst...I'm definitely calling for a second opinion. Thanks. -
It wasn't that it was a suckish Monday as it is for me - that all this is going on around the Holidays! I'm trying to remain optimistic & calm, but my gut is in my throat... -
The hard part is getting through the first few weeks because you are always waiting for further information and tests. Final diagnosis is not usually made until after surgery and scans if they are needed. My pathology changed after my biopsy when my final pathology came back after lumpectomy. Hang in there! Stay positive! Good luck!
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Thanks mdg! I think b/c I'm still in shock & I should not have been b/c I knew something was "up". The fact that I have little ones does not help. I have to put on my "happy face". At least the Breast Surgeon's office just called & made my appt for the am, while they are in school...
Yeah the waiting does not help. I'm the kind of person that wants everything taken care of yesterday & want to know everything now...lol. -
Another here down the east coast from you New Yorkers just diagnosed with invasive ductal carcinoma. Had the biopsy on Wed., then long wait till this AM for the diagnosis. I'll be seeing the BS with my husband Tues. next week.
The BS I am seeing is Director of the Suburban Hospital (Johns Hopkins) Breast Center. So far, I feel like I'm in really good hands and don't feel the need for a 2nd opinion. I could change my mind on this. My husband will meet the BS for the first time at the appointment next week. My husband has been really calm and supportive.
It will be hard keeping this under wraps with my family in town. I told my parents by phone this morning - I don't want them to breathe a word/hint of this in front of my two girls (age 6 and 9). Especially my 9 year old is so smart, she will pick up on the slightest clue. And amazingly, she is quite aware of BC. Several months ago, she felt breast buds (beginning breast development) in herself and wanted me to bring her to the doctor - she was worried. I was so surprised that she would be worried at her age (she is in 4th grade). I don't think I was aware of BC at that age. No history in our family and I'm not aware of any family friends, etc. We did take her to the pediatrician, who confirmed this in fact was breast development. My daughter was so relieved but have to admit as mom it sent me into a bit of a panic which I did my best to hide (yikes! my daughter is beginning puberty?!!!).
I dread telling people. I want to keep this to myself until I have a better picture of what's ahead. I did tell my boss last week though. She is a BC survivor herself (I knew this) and she could sense that something was up. She was really positive and had the just the right reaction. She made clear that my health is my number one priority and it's so good to know that I have such a supportive boss at work. I haven't told any friends. My best friend's mom died of BC when my BF was 21. I can't bear to tell her this news. -
Ms Rocky - I'm very sorry you're freaking out. That was me just 5 hours ago (and didn't sleep one wink last night). But I'm feeling a bit better now after having seen the breast surgeon. I like her a lot and she put me at ease. She gave me a clinical staging but, of course, I know that can change with one or both the MRI and surgery.
And now I'm in appt. making hell, which is actually helping me a whole now. I've set up consultations with a genetic counselor, a plastic surgeon and waiting for a call back from a fertility specialist. We don't have kids yet and actually planned on starting to try this year. I'm not allowing myself to put too much thought into it right now, but I know that it's a possibility that I won't be able to have kids.
I gave my ObGyn an update of what's going on and she agreed that for peace of mind (if nothing else) I should seek a 2nd or 3rd opinion after I get my MRI results. She gave me a few names of surgeons at Lennox Hill, Weill Cornell and NYU (a surgeon who works with my current surgeon). I asked her if she knows anyone at Sloan Kettering and she doesn't. I might call them up as well. -
Hi oranje mama. I had the Biopsy Friday & found it was cancerous yesterday. They told me it was Ductal Carcinoma. I see the Breast Surgeon next Tuesday & honestly can't wait! Now I can get some clarity on a plan and course of treatment... -
I am sorry that so many of you have joined this fight.
My recommendation to you is to get a notebook and a folder.
Take notes at EVERY meeting...if you are not a good note taker bring someone who is. (My hubby's idea of "notes" is the date and doctor name...ugh!)
Write, like its a college class and exam time! I recently discovered some old notes and re read them. Nit is amazing the things I remembered at the time, but have since forgotten. (This was in reference to one of my surgeries)
At my consult with the BS (breast surgeon) , after my biopsies were in, I apologized in advance for not looking at her when she spoke. She said she absolutely understood.
I also use 2 color pens...one for note taking...and maybe a red one for questions while taking notes, or to circle or to underline...so I know to go back to it. Makes it much easier to see where my questions are.
Folder can be for handouts.
In the front of the notebook leave a page or use the front cover to write down doctors name/address/phone numbers. You will be able to find things easily when you go to the next appointment and have to fill out those lovely history forms.
Some people will record the conversation with their doctor...you might want to consider that too. Hubby recorded one visit but I didn't play it back because I know my notes were good.
Wishing you all the best.
Pat -
Grace, my best advice is that you take a step back and slow down. You have very preliminary results from a fine needle biopsy - all you know is that you have breast cancer. You don't know the type of cancer, whether it's pre-invasive (DCIS) or invasive (IDC or ILC as examples). You don't know the hormone status, and that can have a big impact on your treatment plan. You don't know the HER2 status, which isn't relevant to DCIS but is very relevant to IDC and often impacts the treatment plan. You don't know the grade. You don't have an Oncotype score, which is test done after surgery to determine if chemo might be beneficial if you have early stage invasive cancer (chemo is never required for DCIS). You don't know the size of the cancer - while an estimate can be made from the imaging, the actual size can't be known until after surgery - and this will impact your surgical options.
So you have no idea how much and for how long this will impact your life, and in what ways. A small area of DCIS or a small non-aggressive invasive cancer might require only a few months of treatment, whereas a larger and more aggressive cancer might be more disruptive to your life.
Don't work yourself into a frenzy by getting ahead of yourself. Find out what you are dealing with, and then figure out what you have to do to deal with it. A lot of what you are thinking about now might turn out to be completely unnecessary.
I understand the fear when you get the diagnosis, and I understand the desire to jump into action. But sometimes it's better to wait for more information. I think this may be one of those times. (((Hugs))) -
@GraceBer I been going to Mt Sinai's Dubin Breast Center. (I wasn't sure if we were suppose to mention hosp & such.) I was thinking about calling Sloan Kettering as well...I'm sure I might be a little relieved after seeing the BS next Tuesday! This is all nerve-wrecking...
Thanks Pattysmiles! They actually gave me a folder after my second Mammo & Ultrasound. I been putting all my paperwork & notes in that folder. My mother's friend who had Stage 4 - suggested recording the session as well. I'm taking my husband & mother to the BS. I rather the husband b/c he is better in remembering details & asks good questions; as oppose to my mother who asks things that make no sense to me & as I lose patience with her ....lol. -
Wow, Pat, would never have thought of the idea of bringing a notebook, but I will do this. Makes a lot of sense.
I should have paid closer attention with the first abnormal mammo back in May. I really brushed that off. I have dense breasts, so does my mom. She has had several callbacks for ultrasounds and even a biopsy, but hers always came back benign, so I didn't take the first abnormal mammo all that seriously. I don't know what level it was - didn't know they scored them, and didn't even ask. I'm guessing it was a 3. I will say that my primary care doc who I saw in June insisting on me calling to make the mammo appointment for November back in June. She took it seriously. I'm definitely going to make sure I ask more questions / get more information from now on. -
Thank you for the advice, Beesie, but I'm not sure how to slow down. Do most people get the lumpectomy first and then later get the mastectomy if needed? Or is it advised to request a core biopsy before deciding on surgery?
Also, they say it's IDC. -
Good evening to all- the east coast is "in the house" One thing I never did was seek a second opinion. I do know that my pathology was reviewed by several pathologists and they all concurred with the findings as the report called that out. Maybe its because I am in healthcare that I felt if the course of treatment was consistent with the findings, supported by literature and clinical guidelines and I was in agreement that was my measurement.
My breast nurses gave me a great binder with tabs for labwork, pathology, surgeon, oncologist etc. Plenty of lined blank pages for note-taking Its great. All the papers they give me are already 3-hole punched for the binder. Pattysmiles I think you would love this They also had a class for "newbies" but I missed that (in Hawaii).
Ms Rocky-when you see the surgeon and go over the treatment options I think you will feel much more in control of the situation and you will make the right choice for you with all facts in hand.
Grace are you sure you had a fine needle biopsy and not a core or vacuum assisted biopsy- I don't ask to be rude but I am not sure how they can determine IDC from needle aspiration. You are also talking about having an ultrasound and you have a "staging". Just a bit confused so don't want to make any suggestions just here to support. -
Thanks wyo. I was thinking about waiting to see the BS on Tuesday before I make a decision about a second opinion. And Before I decide to do anything with this dr, I have to feel comfortable and confident with him too. I feel comfortable with Mt Sinai and they have my whole medical Hx, and they are conveniently close to home. But in the back of my mind, I was already thinking of getting a second opinion. However, my parents wanted me to get a second opinion with Sloan Kettering. I have several friends who have had Breast Cancer and some who are currently going through it. And all of them seem to have a different things going on - especially with the effects of treatments... -
GraceBer- My breast surgeon is Dr. Van Zee at Sloan. She is exceptional. As other posters have mentioned, the initial shock of dx is the worst.... Once you wade through the options and set up your treatment plan, it becomes more manageable.
I also used a plastic surgeon at Sloan. PLEASE please please feel free to private message me if you have any questions RE my experience at Sloan....
All the best to you! -
we are here for you all have been where you are, so once you get all your info, it will ease some of your feeling, so have HOPE sweetie, that,s what got me thru, and now I am a 19 yr SURVIVOR(Praise GOD). msphil(idc,stage2,0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen)
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GraceBer,
What was your original diagnosis? And what tests have they already done?
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