Newly Diagnosed, trying to make sense of it all

CaliKiwi

Hello all,

First I want to say thank you to everyone who posts on these forums. I've been browsing here for the past couple of weeks since I got called back after a screening mammogram. Truthfully I was hoping that I wouldn't get to this stage, where I felt that I needed to create an account, but my biopsy results came back today and they are not good.

I'm feeling a little bit lost, today has been a bit of a rollercoaster for me. I'm a week away from my 41st birthday, I had a screening mammogram at the end of November and the radiologist asked me to come back for a diagnostic mammo.  They did an ultrasound right after and he told me that the mass they had found he thought was probably benign, given the shape of the calcifications, but that he wanted me to get a biopsy.  My primary care physician called me this morning (I had an appointment for Friday to hear the results) and asked me to come in.  The result was infiltrating ductal carcinoma, grade 2.

My mother has had breast cancer twice. Once at 46 and then just last year at 56, in the other breast, so this was something that I felt I should be prepared for. The reality of getting that pathology report is that I now feel totally flummoxed and have no clue what my next steps are.

My PCP gave me two referral forms to a general surgeon and an oncologist.  I managed to get in touch with the surgeons office this afternoon who promptly made me feel like a fool. Asking what I was calling for, how did I know that I had to be treated, had I had a mammogram etc. Then informing me that the surgeon was on vacation till after New Year and did I want to find someone else. I made an appointment for early January, but I feel so offput by my conversation that I don't even know that I want to go to this office.

Sorry for the long post.  I'm an immigrant to the USA and my husband is supportive and has already arranged to be able to attend any future appointments with me, but my family (and my mother) is far away.  I haven't told anyone else so forgive my venting. And thank you all once again for these forums.

Anonymous

kiwilady, I'm so sorry you received that diagnosis. The first couple of
weeks are the hardest. You've come to the right place - the ladies on
these boards are wonderful and provide great information. I was
diagnosed in July and I am currently in treatment. I would be happy to
answer any questions that I can. Waiting for results and appointments is
a difficult and frustrating part of this process. You are not alone.
There are many caring people on these boards that will help you
throughout your treatment. It must be hard getting that diagnosis without your family around for support. Please feel free to private message me if I
can be of any help.

BrooksideVT

I can see why the secretary's questions hit the wrong note for you.  I found that everything I didn't expect really threw me.  When I received my dx, I called the surgeon immediately, and was told that I could not make the appoiintment directly, but needed to speak with a social worker, who would then make my appointment for me.  I was so frustrated!  And angry!  Now, I can see that this might have been helpful, as I was able to tell her that I was considering mastectomy with reconstruction (after loads of research, I am very happy with my lumpectomy), so she was able to set up appointments with the breast surgeon and the plastic surgeon on the same day.

There is quite a bit of discussion on some of these threads about choosing your surgeon.  Breast surgery is a subspecialty of general surgery, but you do want someone whose practice focuses on breasts, not gall bladders.  My surgeon is a cancer surgeon, and half his practice is breasts.  I am very happy with him and thrilled with the aesthetic result.  Some people want someone who only works on breasts.
I am sure your PCP referred you to this surgeon because of his excellent results, but do not hesitate to ask him abou this practice.

Ridley

Hey Kiwilady. I'm sorry you're here, but given you have a positive diagnosis, this is a wonderful resource for women.  Ask your questions and someone will answer.

I'm in Canada, so the system works a bit different, but I would encourage you to find a surgeon you are comfortable with, who is either a breast specialist or does lots of breast surgeries.  And depending where you live, whether you can see someone connected to an nci cancer centre (there is a list of them on the American Cancer Society web page).

Unless someone has told you (eg your pcp) that you have to deal with the immediately, I wouldn't worry too much about not seeing someone until after Christmas.

Best of luck,

Ridley

Annette47

Sorry you have to join us here!   I wouldn't necessarily be put off by the questions asked by the surgeon's office.  It's quite possible that they do get calls from women convinced that they have cancer who haven't actually gone through the proper diagnostic channels, so they might need to ask those kinds of questions.    Also, for us, this is the (most of us anyway) only time we've had to make these calls, but they deal with people in our situation all the time.   Should they be more sympathetic?  Probably, but I'm not sure I'd ditch the entire practice based on that.   Guess what I'm trying to say is we feel more special than we probably are, if that makes sense.   I would at least meet with the surgeon and see how you feel about him/her .... the front desk staff won't be the ones treating your cancer.   If you get a bad vibe from the surgeon, then absolutely go elsewhere.

CaliKiwi

Thanks everyone for the replies,

I spent several hours reading through a bunch of things last night and now feel a little bit more focused on what I need to do.

I think yesterday just felt so bad because my PCP called and asked me to come in that morning to see them, then they left me sitting in a room waiting for her for an hour and a half. While she was sympathetic when she told me the next instructions were basically, call these people now! Since the whole US health care system is still somewhat of a mystery to me I felt a bit like a fish out of water and when I called the surgeon I wasn't sure what to say, and the questions felt more like "why are you bothering to call me?", than "I need this information from you". ( I know I was likely feeling extra touchy).

Anyway! After a fitful night sleep thanks to a cough that just won't go away I'm thinking that I will call and try and get an appointment with the oncologist even though I've got to wait a month to see the surgeon. I wasn't sure if I shouldn't just leave that till closer to the time but I guess I can see what they say!

Abbyf1030

I too have just been diagnosed with dcis.  I am scheduled for an mrm on Monday.  I feel like someone has sucked all the air out of me.  I can't eat or sleep.  I am told that it is very small and the biopsy came back er & pr negative.  Of course all I can hear is wawawa.   The dr told me this is a good thing.   Won't know what course of treatment I will need but lumpectomy & radiation at the least.  I am terrified.    

CaliKiwi

Sorry to hear that Abby.  I am still waiting to find out about the receptor status. I do know just what you mean about all you hear is 'wawawa' though.  At least we have found a place to get information, or just share and be terrified together.

tangandchris

Hi Abby and Kiwilady-

I was where you were not that long ago, I was officially diagnosed on 10/24/13, and had my bilateral MX on 11/27/13. It happens very quickly and for the first few weeks I was in shock. I kep seeing people post that the first part was the hardest, and I can now see where they are right. With all the uncertainty it can feel like you are going to loose your marbles. I would request some anxiety medication. Also Kiwilady, if you didn't feel comfortable with the office staff at the surgeon's office, you can go somewhere else. The office staff should have some sort of sensitivity training when dealing with patients who have just been dx'd with cancer...this is just my opinion though. Remember, you will be dealing alot with the staff as well as the doctors. I would look for a breast specialist/surgeon rather than a general surgeon.

I'm truly sorry for your diagnosis', this is a great site though and I've vented and posted alot already. ((hugs))

CaliKiwi

The breast specialist/surgeon vs general surgeon is something I was just thinking over today. I live in a pretty small town and there are no breast surgeon's in this area or within a 40 mile radius.  However, we are not too far from Palo Alto/Stanford/San Jose where there seems to be a lot more choices.  My husband is encouraging me to look further afield and thinks that driving for an hour and a half to two hours to get to better care might be worthwhile.

MereMere

Hi All, 

I was just Dx with DCIS. I got my path report and I have some questions.  Anyone know what Ca++ means?  I have been able to research everything else but I can't find it anywhere.  The statement is, "Diagnosis/Clinical Information: Ca++ right breast 12 o'clock to 3 o'clock." 

Anonymous

kiwilady,

I would agree with your husband. It is worth a bit of drive time to see an actual breast surgeon. I'm so sorry that you are here, but there is so much support available on this site! I was diagnosed at 46. My mom had first been diagnosed at 46, and then again (other breast) in her 60's. I understand the feeling of always knowing it might be my turn....but somehow still being completely shocked when I got the phone call. 

You might want to start another message with a header asking for surgeon recommendations in the area near you. 

Please keep us updated!! 

CaliKiwi

Thanks Dulcigirl,

I may just start another message asking about it.

armywife199

Abbbyf1030, I pray you get through this with many BC friends here.  DCIS means that it is in the Duct.  Think long and hard about ANY lymphnodes being removed.  They are honest and talk of side effects of having the nodes removed but at this time you are focused on the "CANCER." With good reason.  However, pull up the lymphedema discussion pages.  I cannot tell you how bad it hurts when there is swelling.  Each muscle fiber in your arm is individually wrapped with a cover.  When the swelling starts it is like these are individually being stretched.  To say it is painful is using a word that at times does not even begin to describe the pain.  Or, get it in writing they will only take one to test.  Get it in writing.  That is my word, I won't bother you again, I just wish someone had spoke with me honestly.

-Cindy

Mommyathome

Cindy,

I see on your diagnosis section at the bottom of your post that you had 0/13 nodes tested positive. Why did they take so many? If the sentinel node was negative shouldn't that have been enough proof that it didn't travel to the nodes?

kwing514

Throughout all the appointments, tests, treatments and many serious decisions I clung to something my fantastic surgeon said to me in the beginning, while looking in my eyes and holding both of my hands in hers, "K. you must keep in mind. Getting through this is #1 in your life now. This comes before everything else."

momand2kids

A couple of things that helped me during this part of the process.  The radiation onc saying "this is just a bump in the road", the diagnostic radiation onc saying "this is something, but it is small, treatable, curable".  My onc saying "this is 2009, we can cure breast cancer (I know this is controversial, but at that moment, I needed to hear that)  My surgeon saying "I expect you to do very, very well."   Taking some ativan early on to ease the anxiety of new information..... 

I think that you will probably find some very good bc surgeons and oncologists at Stanford.  And it will be worth it. Even though it is not the same, I live close to a hospital with a reputable bc group.  But I also live about 20 minutes from Mass General and Dana Farber, 2 NCI designated cancer centers.  Even though it was inconvenient some days for treatment, I decided that is what I wanted and I never regretted it.  You need someone who does bc surgery every day, who is connected with plastic surgeons if you need it, who can recommend the best oncologists (who you really need to like since you are going to be with them for at least 5 years)

Keep us posted. we can help