If you have just been diagnosed....

Hi, I'm a new member here. 28years old, no family history of cancer, vegetarian. Diagnosed last week with IDC stage 3. Not sure what's going to happen now. Preparing to meet with surgeon. How do I know which surgeon to choose? When will they tell me my treatment options?

Ive just been diagnosed with idc and dcis...no cancer in the maternal side of the family, dont smoke, dont do drugs..prescription or otherwise, i like wine...i exercise regularly and try to eat right...this is not supposed to happen. regular mammograms showed nothing until i felt the lump...so please, it pays to feel yourself up!  ultrasound showed the problem, mri found more...great. i have 4 grown boys and i feel like ive thrown a grenade into the middle of my family...i know no one asks for this...and im amazed how many of us there are out here.  the first day i found the troops massing with and for me, women, and men, that are survivors...their support is amazing. now waiting for drs to stop being out of town, figure if i need another area biopsied, and decide on what kind of surgery...the waiting and not acting is nerve-racking...i want this stuff out of me now!!

thank you mandy...roswell is a next step...im having a good week this week, but things are just not happening fast enough for me...and its irritating...thanks for the info...

5/4    Sherlaud        HI!  I read your post last night and as nearly as I could tell there weren't many responses to it.  Realizing your cancer journey began in March, this maybe somewhat late, I hope all is well with you now.  But my heart was touched by the lonely circumstances surrounding your surgery,  Thank heavens your husband was there. The medical bureaucracy can be cold and clinical just when you need information and a liitle tlc,  Hugs to you I care.  Elaine7736

Hi everyone. I'm 42 yrs old and I was diagnosed last week with breast cancer, but it was done by a general surgeon who actually specializes in cardivascular surgery. I was in such a state of shock after he called me in to discuss the results of my biopsy - so much so that I didn't know what questions to ask. I have no idea what stage my cancer is, what kind it is or anything. He said (and I quote) "Your biopsy showed a malignant mass approximately 0.6cm and I believe we got it early. You have two choices now; either a lumpectomy or a mastectomy."

He then went on to explain that with the lumpectomy, I'd have to do chemo & radiation for several months, and with the mastectomy (depending on the pathology of the removed breast along with a couple lymph nodes) I might not need chemo or radiation. He wasn't very forthcoming with information, only saying that 11 days had already passed since my biopsy and I need to make a decision in a hurry. I asked him to show me the pathology report and he let me look at it but they didn't give me a copy of it. I couldn't make heads or tails of it anyway. I've been reading about breast cancer all weekend while waiting to go back and see the surgeon again tomorrow (Monday, May 10).

I never felt a lump or anything anywhere and 2 years ago I'd had a sonogram because my doctor at the time said my breast tissue was too dense for a mammogram that I'd wanted to have done right after my 40th birthday, as my G.P. advised. I've since relocated to another state and went to the women's health center in my area because I've been in perimenopause for 2 years now as well, and am having problems with endometrial cysts and heavy/irregular bleeding. I asked about the mammogram and they gave me one last month - the first one I'd ever had in my life. The radiologist didn't see a lump on the film and they couldn't find it with a sonogram, but there was a tiny spot in the center core of my breast where tissue had begun "tethering" and she wanted it checked out. So I went in and had the biopsy done by the aforementioned general surgeon. (The only breast-specific surgeon in my area doesn't accept my kind of insurance). I'm told that I'm very lucky they even found it at all, as it could have been very easily missed.

I wasn't expecting to be diagnosed with breast cancer because it doesn't occur on either side of my family anywhere except for my great grandmother on my father's side. Then suddenly, I'm told I have a cancerous lesion. The general surgeon is pushing me to do the surgery ASAP, by next Friday or the following Monday at the latest. I am a high-functioning autistic and I know very little about this kind of thing and I am very afraid of hospitals and doctors. I had expected the surgeon to refer me to a counselor or an oncologist to further explain the pathology report to me, but he didn't. All he did was have his assistant make a pre-op appointment for this coming Monday. I can't even see my general practitioner until Thursday, and I have to have a referral from the G.P. to see an oncologist, which could take a couple more weeks.

 I'm scared and I can't get anyone to tell me what kind of breast cancer I have, what stage it is or if it's the fast-moving kind. I've been going crazy all weekend. Will the cancer spread if I ask to wait a few more days to ask about a second opinion? He didn't say anything about possible reconstruction if I wanted to go ahead and do the mastectomy of my right breast. They're doing DNA tests (I assume for the BRCA gene mutation?) and I still don't have any word on that, either.

What should I tell the surgeon when I go in tomorrow afternoon? Should I ask for more time or should I just go ahead and set up the mastectomy and await the pathology from the removed breast itself?  I want to hold off at least until I can talk to an oncologist or something but I'm afraid that if I wait, the cancer will spread. The surgeon made it sound very urgent that I do this like Right Now. What should I do?

thanks,

Jill 

Oh, rainstorm -- I'm so sorry about your diagnosis, but, as Mandy has said, it sounds like they've caught it very early (0.6cm), which is good news!  From that bit of information alone, I would not let a surgeon rush me into surgery without knowing the answers to the questions Mandy has noted above. 

Another factor that goes into whether or not a lumpectomy would be a good choice is the size of your breasts.  Obviously, they can get much wider (safer) margins if your breasts are fuller, and if the lesion isn't deep and close to the chest wall.

I second Mandy's suggestion that you get another opinion, and I also think a university hospital would be the best choice, partly because of their reconstruction options IF a mastectomy is what you decide you would prefer.  That's also what I did -- started out with a local surgeon, but swtiched to UCLA after getting a second opinion there.  And most hospitals of that caliber take a wide range of health insurances, and they usually will get you in very quickly since you already have a bc diagnosis.  But, honestly, from what you've told us, unless you test BRCA positive or there are other complicating factors about your pathology, with a 0.6 cm lesion, I would certainly be considering a lumpectomy until a surgeon could show me the significant benefit of a mastectomy -- beyond avoiding radiation, which is very high tech these days and I didn't think was any big deal.

In most cases, by the time a lesion can be picked up on any type of imaging equipment, it's already been growing for at least 5 years, and often more like 8 or 10.  So, barring other complications we may not know about, taking a couple more weeks to get a second opinion and think things through is entirely reasonable. 

Hope this helps, and please let us know how your app't. goes today, and what you decide to do!  (((Hugs)))  Deanna  

Hi, Jill ~ Here's a list of the NCI-designated cancer centers around the country.  Actually, the U of A at Tucson might be the closest one to you, depending on where you live:  http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

If Phoenix is more convenient, I know there are several women on BCO from the greater Phoenix area, and I'm sure they can give you the names of surgeons they've used and really like.  You can either use the "Search" feature (to upper right), or maybe start a new thread asking for a surgeon recommendation in AZ.   I know 3 hrs. is a long drive because I live near Palm Desert and that's about what it takes me to get into UCLA.  But I honestly think you'll find the expertise at a larger facility well worth the additional driving time on so many levels -- including trust and compassion -- neither of which it sounds like you have going on with the surgeon you have now.   

Oh, and please ask again for a copy of YOUR pathology.  They have no right to deny that to you, and it will tell you volumes about your situation that we can help you understand.   Quite frankly, I don't know how any surgeon can expect you to make a decision as important as lumpectomy vs. mastectomy without having a copy of that report to read, research and understand exactly what you're dealing with.       Deanna     

somanyblessings ~ I'm sorry that you, too, are joining us, but you've found what many of us feel is the best place on the internet for support and information.  It sounds like you may have been under a lot of stress when you were diagnosed, especially to then come down almost immediately with pneumonia.  I hope you can do some things to relieve the stress and try to relax while waiting for that surgeon's app't.  I think we women often don't realize how much we constantly put everyone's needs ahead of our own until something like this happens.  Then we really need to learn how to start putting ourselves first, at least for now. 

As I'm sure you've already heard, the wait to see a surgeon and get any necessary tests done is definitely one of the worst times, because, as you said, we don't know what's ahead, so our minds go kind of crazy with the "what ifs."  It honestly gets better once you know your treatment recommendations, and can actually get that started.  In the mean time, we're here if you feel like talking or have questions.    Deanna

Hi Monisch!

Sorry that you have joined us, but you have come to the right place for help and information.  It sounds as if your doctor wants a full picture before he/she gives you treatment advice and that is good.

Many women are able to work on a regular basis all through treatment, including chemotherapy and radiation. It is a very individual thing. So try not to worry about the business at this point. And, I did not have as young a child as 13--mine were 20 and 23 when I was diagnosed, but they just assumed that I would be fine after treatment. And it is almost 2 years and I am!

Feel free to come back to these boards and to post any and all questions and thoughts that you may have. You will find that we are a friendly and supportive group!

Hugs

Mandy 

Hello to all... thanks for the replys  . it really helps me to know Im not alone. Only unfortunate that all of you are in the US.  I have been living in Northern Germany now for almost 22 yrs.

I picked up my Pathology report yesterday and am trying to deceifer the information on it... Im not sure if is equivilant to what American Path. reports have.  I have 3 lumps in the left breast...

2 of which are Cancerous... heres a try to to translate it:  differential. invasive ductal mammacarzinoms.  B-classification:  B5b  differentialgrade: G2

then theres this :  ICD 10:C50.4.    ICD 0: M8500/3

apparently the lumps are not receptive to estrogen or progesteron- negative on both lumps

and then theres a note :  no sign of  Her2- protein expressionsample  - over expression  score 0

 the 3rd Lump was classified as a non- cancerous

 Does any of these things mean anything to you ???  paralell to this I will google  .

By the way I told my older children last night. I Gave them as much Info. as I have already.  My daughter whos 21 cried, my son took it with spirit although he's one not to show emotions to easily. I told my children they are welcome to join me when i visit the Dr. or go on the Net to get Info. Now I just have to figure out what i should tell the younger son whos 13.

The scans im getting tomorrow are:  Bonescan done with contrast and a lungxray.

next week is the stomach/liver sonogram.

Thanks ladies for being here.... 

hi, im not sure if im posting this in the right spot as i have never done this before,and i am a mess!! im 44 and have a 9 and 12 year old. about 3 weeks ago i was told i have lobular breast cancer in my right breast, stage 2 a, my tumor was 2.6 cm, i had a mastectomy and three lymph nodes were removed and all were negitive. I had bone scan and chest scan they were fine but it was very scary, tomorrow i have an MRI and im so scared it will find something in my other breast, mamo,ultrasound and breast surgeon did exam and it seems to be fine but im still scared to death of it.I do plan on another mastectomy for the other side cause it scares me so.. i thought when  she said it did not hit my nodes that i was good, but then she said i should consult with an Oncologist about chemo. I lost it.. I dont know what they will say or suggest, i cant seem to function very good now till Thursday (my Appt), im scared of chemo and of coarse losing my hair, im a very positive person but i have been crying a lot about this the past 24 days.. what will those Oncologist say? what will they want me to do? what kind of chemo?    this is so neat to have a site like this..

Hi, Cheyenna ~  I'm so sorry you're joining the club that none of us ever wanted to be in, but I'm so glad you've found BCO!

These days most node-negative women are evaluated with something called the Oncotype-DX test, to determine if chemo will benefit them.  What your oncologist does is send a bit of the tissue from your surgery to a lab that analyzes it for 20+ genetic features and comes up with a numerical score that translates into the % of benefit you will/will not get from chemotherapy.  You can read a lot more about it by searching "Oncotype" in the informational part of this website (Treatment & Side Effects at very top of page).  You can also look for a thread here called Oncotype-DX roll call, where women discuss their score and their decisions.

I know chemo is probably the scariest part of a bc diagnosis.  We all fear it.  I fought the idea like crazy!  But if it turns out that having it will significantly increase your chances of not having a recurrence, then it's definitely something you'll want to consider.  Hopefully, you won't need it, but just know that there are hundreds of women here to help you make that decision and get you through it, if it should be recommended.  And, yes, the hair loss isn't fun.  But there are very natural looking wigs these days, and it grows back. 

Are you in Southern CA?  I'm near Palm Desert, but my surgery @ UCLA.    Deanna 

caaclark,

 thank you for responding to me, there is so much to read and learn here, and really im feeling a bit better since this morning and finding this site,lol crazy how it helps. but i am still scared out of my mind, and the thing is, its not me im scared for, its my kids!!!  I know ill be spending some time here and am thankful to have found you.

Hi Ladies,

I have a question for you .  I was diagnosed last week ( I wrote in this topic ), Wehn I have my Lumpecthomy does it automatically mean I receive Chemo or Radiation therapy ?? or can it be possible that they remove the lumps and then say... your good to go.. no further therapy.

 By the way I had my last sonogram done yesterday. My Bonescan , lung xray and abdomon ultrasound were A-Ok.... nothing further detected.

What would be next tests that I'd have to undergo before the Lumpecthomy ?

Hi Debbie,  Thanks for your response.  I dont have an Appt. yet for my operation.  I 'll have to see my doc. next week for a long talk. I'm sure i'll find out then what my next step is.... or when the operation will take place.  She mentioned something about wiring before the op. and that the

Sentinal node will be removed and tested in the Pathology lab while im still on the table.  I guess thats when we will know at what stage i'm in.All I know is that its IDC and Grade 2, HER2 Protein negative and Hormone ( both Estrogen and Progesteron) Negative  Gosh it drives me nuts to wait on results.  I want these monsters out of me. ( have 2 left breast at 2 O'clock and a small non-cancerous lump at 8 o'clock ).

All