If you have just been diagnosed....

Hi, Barb ~ A couple of thoughts about your situation...  First, I'll bet there are breast cancer survivors in your area who would be happy to drive you into a city to get the medical attention you need and deserve.   We live about a 3 hour drive from LA, and I know I would gladly do that for someone here.  So at some point, if you need to get into El Paso, etc., you might want to contact your nearest American Cancer Society office and see if they have volunteers available to help with that sort of need -- just for future reference.  And if there's a social worker at your local hospital, they may also be able to find someone to help you if you decide you do want to pursue reconstruction, which I realize is also a very personal choice.  I would just hate for you to not do something you really want due to an inconvenience factor, but you have time to decide and look into figuring it out.

As far as the fluid build up...  Initially, I thought you were talking about an egg shaped lump of fluid that can develop at the site of where a drain tube is removed.  But from your description today of the burning sensation in the back of your arm, it sounds like you might be developing some lymphedema, which really should be looked at by a lymphedema therapist.  Many times our doctors don't take it as seriously as they should.  Some treatment now will save you the possibility of a lot of ongoing discomfort in the future.  There's information about lymphedema in the informational section (bar at very top of page; side effects), and also many discussion threads on it in Forum Topics.  Please read up on it, keep a close eye on your body, and have a game plan to get to a specialist if you feel you need to.     Deanna

I was diagnosed two weeks ago with IDC.  I have a lumpectomy scheduled for March 18th with a sentinal node biopsy. I will have to have six weeks of radiation. Surgeon says we will not know about Chemo until after the surgery.  My question is, is it common to have  Chemo after a  lumpectomy?  Do the lymph nodes have to be positive for Chemo to be ordered or will chemo just be the next step? I have read so many conflicting things about chemo, some reports says Chemo after the surgery no matter what, some say only if the lymph nodes are positve for cancer. Will the surgeon know just by looking at them, or do I have to wait AGAIN for those results? Thanks for any insight on this subject.  I am really afraid of the Chemo.  Does radiation have any negative side effects?

catok ~  Perhaps you've gotten some answers to your questions by now, but in case you haven't, I thought I'd try to fill in the blanks for you.  Without positive nodes, most women are given a test called the Oncotype-DX, where a bit of your tumor is analyized for 20-some factors, to determine if chemo will benefit you.  You can read about it in the informational section of BCO (at very top of page; go to Symptoms & Diagnosis & use search feature).    Until quite recently, chemo was recommended for women with 1 or more positive nodes, but now the Oncotype-DX is also available to women with 1 to 3 positive nodes.  The Oncotype-DX is usually ordered by an oncologist, and I believe it takes about 3 weeks to get the results.

If you have any visible positive nodes, your surgeon will tell you right after your surgery.  If not, even if your nodes are called "clear" in the OR, there is always a chance that the final pathology will find something that wasn't visible to the surgeon.  That's what happened to me, and it was devastating to find out 4 days after my surgery that I did have a positive node afterall, since no one had forewarned me of this possibility.

Hope this helps, and happy to answer any other questions you might have.

Good luck with your 3/18 surgery.  And if you haven't already, you might want to join the March 2010 surgery group here, to share information & support with others who are having surgery this month.   Deanna

I am 37 years old and found a lump in my left breast.  I went through all the steps including a biopsy and sure enough it is cancer.  I am scared to death of course.  The surgeon told me it is the most common cancer being in the milk ducts and it doesn't seem to be attached to anything as it moves a little bit and doesn't see or feel anything in my lymph nodes, however the lump is a good size, about an inch or so, keeping my fingers crossed.  I went through the genetic testing and am awaiting the results back.  I did just find out that the genetic mutation does run in my father's side of the family so I am scared for my children because of that.  I have decided to go with a bilateral mascectomy and expander reconstruction at the same time.  Has anyone gone through this?  I am a nervous wreck about just making it through the surgery and then to find out the extent of the cancer!

Goldstar ~ So very sorry you're joining us, but I'm glad you've found us!   They should be able to tell you some initial facts about your bc from your biopsy, although some details won't be available or definite until after your surgery.  But ask for a copy of your biopsy report, then post here (as a new topic; this particular thread doesn't get as much attention) and ask for help interpreting it.  Be sure to get copies of all your test reports for your own file, so that you can refer back to them as needed. 

Did you know there's an entire section here called Young Women With Breast Cancer?  (Forum Index above.)  It's shocking to me how many very young women, like you, are being diagnosed with bc, but I'm sure you'll find a lot of support there with things like what to tell a 6 year old.

As far as how you're feeling about your diagnosis, there is no right or wrong way to feel.  We're all different, although  many of us shared a feeling of disbelief or lack of connection with what was going on -- sort of like it was a bad dream, or watching someone else go through the motions.

Well, I just wanted to welcome you.  I'm leaving shortly and will away from the computer for 3 days, but I'm glad I saw your post before I left.  I hope we can be a needed support for you now.

(((Hugs))) to you, and just know that it gets easier as you know more and begin to develop a treatment game plan with your doctors.    Deanna

Pathology reports are very confusing....Just diagnosed 01/10/10 after Doctor removed "suspicious" area from right breast after having a mamogram, ultrasound, and MRI and nobody was saying the cancer word.  After removal - stage 1 cancer.  Decided to have a double mastecomy and had that done on Feb 19 - Two different hospitals with two different labs doing the pathology reports.  First path report says .9cm, Stage 1, Grade 1, Est/Prog - and HER +  Second path (from mastecomy) says .9cm, Stage 1 Grade 2, Est/Prog - and HER borderline to positive (2+/3+).  Doctor sends out for a FISH test for HER status comes back NEGATIVE.  So we still have a difference with the Grade.  Onconolgy Doctor recommends to monitor me closely due to Triple Negative Status but says I am in the gray area when it comes to Chemo...How can a triple negative (aggressive) cancer be a grade 1, arent they usually a grade 3 due to the aggressive nature?

Deanna - Yes, I did get a second opinion and this onc has strongly recommended chemo 4x TC.  She said if I had the small tumor (.9cm) and the no nodes (like I do) and if I was ER/PR +, then she would say no chemo.  But because I am triple negative I will be starting the chemo in two weeks.  She said the Triple Negative outways the good stuff. She went over "stats" for recurrances and I definately want to cut down on my chances of it coming back.  I am also looking at my diet (low fat) and walking more and hopefully that helps also.  She is also running some more tests - that were not done before to see how "aggressive" my Triple negative cells are/were....It just rots because when I when first diagnosed, I was so happy thinking I did not have to do chemo because my tumor was so small and no node involvement - I never knew anything about this Triple Negative Breast Cancer - I am now getting quite the education....I also get so tired when people say "you are lucky because your tumor is so small"  They are right but, I dont even feel like telling them about the whole triple negative thing....

  well i haved changed my mind about what i am going to do. i am going to do a bilateral with reconstructive surgery. they all seem to want me to do that. cause i am 32 and they insist that i will want that later on in life. I DONT CARE ABOUT IT!!! I JUST WANT TO KEEP MY LIFE!! aint worried about what it looks like. i have been plagued with ugly boob syndrome for almost 7 yrs(my first child) that i have kinda gotten used to it.

 ah well. maybe they know best. the surgeon that was simply adamant about it i highly value his opinion. he wouldnt tell you something that wasnt beneficial to you. so ok. may as well,huh?

Hello, my mom was just diagnosed. How did u find out what type of breast cancer u had before the surgery? My moms dr did not gives us a description she just said it was scattereD in her left breast. Should we have received a pathology report? Is it better to waiT to get all the options or should she get it out asap? Thank you for ur help sorry to hear of ur diagnosis

Hello everyone.  I was just diagnosed yesterday with IDC.  I had my biopsy on Monday and all the while the procedure was being done, I just had a feeling.  The tumor is very small, but its the "invasive" that has me reeling.  I meet with the surgeon on the 21st.  In the meantime I am reading everything possible and talking with a friend who has gone through it. 

A couple of questions...will I know even more after surgery.  I am an asthmatic and also am dealing with hypothyroidism.  Will these conditions hinder my recovery?  My head is just spinning... 

Welcome kas & Toye!  I'm so sorry that both of you are joining the club that none of us ever wanted to be in, but I'm glad that you've found us!

Kas ~ I'm happy to know that your tumor is very small.  Yes, the surgical pathology report will give you additional information.  Be sure to ask for copies of all of your pathology reports, starting with the one from your biopsy.  As you learn more of the terminology of bc, you'll probably want to go back and recheck your reports to see how that information applies to you.

I'm sure your surgeon will be able to answer your question about asthma, including maybe putting you in touch with an anesthesiologist prior to your surgery.  As far as the hypothyroidism, that's interesting, because quite a few of us on BCO have had thyroid issues in our history.  In fact, there are some doctors who assert a connection between iodine levels and breast cancer prevention, believing that the current normal thyroid ranges are too low for breast health.  It's a controversial topic, but something you may want to look into in the future.  But unless your condition is severe, it probably won't have any impact on your treatment or recovery.

Toye ~ Your breast surgeon will probably refer you to a plastic surgeon who specializes in breast reconstruction, and who can discuss your options with you.  I personally found that going to a large breast cancer center where they were both on staff and worked in tandum was easier than trying to piece them together from private practices locally, but women do it both ways, depending on the expertise available in their areas.  In general, reconstruction can be done either along with a mastectomy, or later; either using implants or your natural tissue, usually from the tummy (Diep flap).  Or, depending on your bc, if your lesion is small, you may be able to have a lumpectomy with wide margins, plus reductions on both sides.  But you'll want to read up on the options and discuss them with possibly more than one reconstructive plastic surgeon, because they don't all offer the same options.  But what you're suggesting -- a bilateral mastectomy with a reduction -- is totally do-able, and you can find discussions about it elsewhere within these boards.  Also many plastic surgery practices have websites that show photos of reconstructed breasts, including reductions.  (Look in the Plastic Surgery section here -- under Forum Index above -- to get started.  You'll see NOLA in New Orleans talked about a lot, and their website has a lot of photos.)  Whatever you decide to do, be sure your plastic surgeon has extensive experience with the specific procedure you decide on.

You mentioned two generations of breast cancer in your family.  If your surgeon doesn't bring it up, you might want to ask about BRCA testing, a blood test to see if you possibly carry a gene mutation related to breast cancer.  A genetics expert can decide if testing would be appropriate based on a few questions about your family history, and if they think it is, then knowing could impact your treatment decisions.

Hope this helps!     Deanna

dlb823,

Thank you for your reply and sorry for the delay I could not figure out how to see if there were any replies to my post.  I was in a pretty stressed and worried state last week. I have since then been reading more about bc and collecting information for my mom.  She has an appt today with an oncologist for a second opinion ( which I'm not sure if she should get a surgical opinion). I now know that she has multi-focal which if I understand correctly means it is spread in various areas. She has grade III, Invasice Ductal Carcinoma but I don't know what stage she is at or the size of her tumor ( I couldn't find it on the pathology report). I'm told we will know more once she has the surgery and lymph nodes are removed. We have met with the Breast Cancer Navigator at our local hospital which is a nurse who is funded through the Susan G Komen fund and is there for support and education.  The navigator told us that it looks like my mom has fast growing or aggressive cancer.  This really concerns me and I want my mom to keep her surgery appt for this Wednesday because her cancer is fast growing. I now know that because she is multi-focal that she would need a mastectomy.  My mom definitely wants to get a reconstruction but we still need to research that more because reconstruction I'm told involves various surgeries. I still don't understand chemo and radiation but I haven't read up on that just yet. I'm sure the oncologist will cover that information. So I guess the more i read the better off we will be. Its hard to find information in Spanish

Thank you very much for the information that makes it so much easier to go back to the topic.  I think I will post a new forum regarding the information in Spanish.  I know this sounds selfish but I'm having a bad day.  My mom had an appointment with her Surgeon today and for some stupid reason the Dr's office did not look at her EKG (she had this before the breast MRI) until today and decided her EKG was not normal. So her surgery has been postponed until further notice or at least until my mom decides she wants her breast removed.  Now my sister is telling me my mom thinks her cancer can be cured with a holistic juice alone because my grandmother told her she doesn't think she has cancer and that she can cure it with a juice. Very frustrating day

Hi, BAK ~ Yes, most women have that J hook put in prior to a lumpectomy, to guide your surgeon to the lesion.  It's pretty standard practice.  I had it with my first surgery, and it wasn't bad at all -- not nearly as bad as I'd feared.   The lumpectomy really wasn't that bad either, and I thought radiation was very easy -- no problems at all.  Hopefully, your experience with each of these steps will be as easy, although I know it's all very scary now.

I'm so sorry that you're joining us, but do look for the May surgery group here.  It's probably already forming, and will be a great place to share your fears and learn from other women with similar surgeries scheduled earlier in the month.     

I'm curious how your knee replacement went.  My husband needs one of those but keeps procrastinating about getting it done.  Are you happy with yours?  Deanna 

I have no Idea where to go to ask questions I cant find any topics on what I want to discuss I am new to this sight.

In January I was having issues with my bowl movements constipation really bad and stomach pain. I had second colonoscopey   and no issues with my diverticulitis, no Cohen's disease. polyps tested negative to cancer. I Have had numerous stomach x-rays, cat scans, Hyde scan (spelling) and 3 to 4 sonogram's nothing ever detected except for a polyp in my gallbladder. I have lost 14 -16 lbs in 3 months. I also have an unexplained salty taste in my mouth.  

I have been diagnosed with Grade 2 IDBC   on April 9th I go to Roswell Park in Buffalo on April 28, I have no Idea what stage I am, my PCP could not tell me she said I would need more testing. Here are my questions when I go for 1st appointment what should I expect will the do further testing that day? Or will they just discuss my options. If I go for surgery how long will my stay be. Also when you have Chemo and Radiation is that inpatient or outpatient? I live almost an hour away from hospital. How soon do they schedule stuff are they quick or slow? I have tons of questions just cant remember all of them, 

 I am not sure where to post or if i should post new topics. Please help even if you have to private message me. Yours truly another BC survivor. Cathy