First visit - two ONCs MO & RO. Terrified and confused.

Eleanora23

Hi all,

Just checking in and also concerned here about the flow/ order of doctors visits in this process before getting treatment started. I am afriad I will not have the right questions tomorrow, or understand the information. Afraid that the visits are too short (45 minutes maybe each?) Mostly just afriad that I am going through this alone at this point (I am isolated in my rural town, not from here). Mammaprint results concern me but need to write about that separately after seeing the MO.

I've been meaning to post something since DX around the holidays. I have left my first breast surgeon, who ordered test I wasn't sure why they were needed (MRI, BRCA 1,2 and then the most puzzling to me since I've found out it is in the ONC territory, a mammaprint, results were given to me with NO explanation. Doc had no people skills and was mean and HIGHLY impatient with my question. The relation I took (not close to her) tried to advocate for me briefly in the first session, but gave up by the third and lost interest in the whole business). My anxiety level shot THROUGH THE ROOF, with this doctor and all the ambiguity involved. I was so upset at Doctor I actually raised my voice to her (rarely do that) about needing to ask questions and not being cut off.

Needless to say, after delays and the nightmare office visits, I have moved on from this surgeon and two weeks ago found a new one at a larger medical center (much nicer and open to questions!) The first appointment was like a meet and greet and to tell me that she concurs with the Stage 1 (grade 2) diagnosis (Although now from reading here and elsewhere, I understand all this is preliminary anyway). I appreciate on that very same day she referred me to both MO and RO (I had a recommendation from an internist about them too) and she got the ball rolling finally.

Anyway, I am terrified today. I am going alone tomorrow (no choice, no one to go with me). I am concerned about the order of things here. I guess I am also in the position of needing to make a decision about partial or full mastectomy this week and the surgeons' office already called and want me to come in the day AFTER the ONCS, but I asked to give me a few days. I know I wont' made a decision until after I see both ONCs.

I'm glad I got to post something here. I'm trying to limit the internet information I check.

Also I have been actively seeking a support group. The one in city near me told me a month ago ( I called... I was desperate to find others with this!) they told me it is "too soon" for me to use their services.

Anyway, nice to meet any and all of you that I meet here and thank you for SHARING all your information.

keepthefaith

Eleanora, sorry you found yourself here, but welcome! I just wanted to reach out and let you know that you are not alone. You may want to record your appts, since you are going by yourself. It will probably not make much sense at first and may be over-whelming. You may want to contact your local chapter of the American Cancer Society, if you are in the states. They have support groups, rides to appts and a lot of other resources. Don't rush into your decisions, get 2nd opinions, if you need to. Get a copy of all of your medical records as you go. Wishing you the best as you move forward.

Skittlegirl

That's weird that the support group said it was too soon. I went to my first meeting the night after I first met with my BS. Not even diagnosed a week. Hadn't even met my oncologist. The ladies were fantastic and very welcoming.

Eleanora23

I guess you were very lucky then Skittlegirl. I live in a rural area, however I was willing to travel, and that is what I was told. I suppose I could them again and ask if I can be allowed in yet.

Sigh. This started as a real uphill battle in getting information, getting support, etc..

I didn't even want to post here...I hate asking for help. So thank you keepthfaith for your encouraging words and support.

I'll try to check back tomorrow after Oncology appts if I don't feel like a complete wreck.

SpecialK

Eleanora - I wanted to let you know that my BS also ordered the same battery of tests, an MRI to help determine if there was any additional areas of concern not picked up by mammography and ultrasound, BRCA testing to help determine if there was a genetically driven component to my cancer - and if positive, would indicate a different surgical approach was necessary, and also a Mammaprint test.  While the information from Mammaprint is used by the medical oncologist to help determine systemic treatment, it is often ordered by the surgeon since they have control of the pathological specimen.  Having that test information ready for the medical oncologist helps expedite treatment decisions.  Since tests like Mammaprint and Oncotype Dx take a number of weeks to perform, it is helpful to the medical oncologist if the results are ready when you have the consult.  Certainly none of that excuses this physician's behavior and I am glad you were able to find another surgeon with whom you have a more comfortable relationship.  Wishing you the best and know that the people here are supportive and welcoming, and will help you in any way they can.  Since you are going alone tomorrow you might consider recording the appointments - you may be able to do it with a cell phone or small handheld recorder.  Good luck!

Rockym

Record, record, record. I used a livescribe pen for taking notes and was able to download each doctor's visit. I bought the pen for $100 at Best Buy and it was originally for my son to use at school. I never told the doctors that I was recording. I also went in with a load of questions and then just used my livescribe notepad to fill in the results.

All the tests your first doctor did were exactly what you need to make an educated decision about treatment. It sounds like that was the only good thing to come out of the first doctor. Good for you for not going back to her. There is no way you want to spend any time with jerks and ill mannered people. This is a rough enough time and it's important you like and respect who is treating you. My BS was originally the father of my son's friend. BS was a great guy, had a wicked sense of humor and was a skilled surgeon. I was able to do a lumpectomy, chemo and rads. The BS did such a great job, there is only a small thin scar under my armpit. I'm almost five years out and my breasts are back to looking like they did five years ago. Good luck with your upcoming visits.

movingsoccermom

Eleanora. So sorry you are walking this path alone. I set up a zippered folder when I was diagnosed, and put literally everything related to the breast cancer inside that pouch (test results, articles, phone notes, emails, everything!). The volume of information can be overwhelming, and much of it happens quickly. Many of this articles on this website are quite helpful and assisted me in negotiating the process. Much of the commentaries on the boards worked as my support group. You have my very best wishes as you work through this craziness.

Eleanora23

Thank you guys for your informative and supportive comments. So much appreciated.

I'm glad to know the test were done in the right order, even if I have sat around with that scary mammoprint results and no one to explain it to me or talk to about it for a month. I suppose today the MO will help me with that, and I will surely bring it up. I have suspected for weeks I'll have to brace myself tx plans that suggest Chemo.

I am leaving for the two oncologists visits soon and will hopefully be able to record on my iphone. I takes fast notes. I'll find the right spots on this board to post later. So many place. Thank you again.

kandispaz82

So here it is. I was diagnosed with IDC, HER2+, Estrogen and Progesterone +, BRCA1/2-. My tumor is 1.1 cm, Grade 2, not sure of stage yet but surely it's in the beginning. I will have a port catheter implanted on Friday (2/26/16). Then araet chemo (TCH + Perjeta) on 3/10/16. I plan on updated you all on my progress (with pics) in an attempt to support anyone that has questions. Let me know of you have questions about my specific treatment...but keep I mind everyone is different. I'm 33yo, 5'2", 115lbs, twin boys, single mom, work in Higher Ed

kandispaz82

So here it is. I was diagnosed with IDC, HER2+, Estrogen and Progesterone +, BRCA1/2-. My tumor is 1.1 cm, Grade 2, not sure of stage yet but surely it's in the beginning. I will have a port catheter implanted on Friday (2/26/16). Then start chemo (TCH + Perjeta) on 3/10/16. I plan on updated you all on my progress (with pics) in an attempt to support anyone that has questions. Let me know f you have questions about my specific treatment...but keep I mind everyone is different. I'm 33yo, 5'2", 115lbs, twin boys, single mom, work in Higher Ed

Moderators

Hi Kandispaz82,

Sorry you had to be here but we're really glad to see that you found the community.

We're sure others will be along soon to offer their support and experiences, but in the meantime you may like to check out and join the Starting Chemo in March 2016 Support Thread

as well as the Tips and Shopping list for getting through Chemo thread.

Best wishes,

The Moderators.

Eleanora23

Kandispaz, we sound like we have similar diagnosis and similiar suggestion in terms of chemo. . (I had started this thread... )

I wish you the best and would like to hear how the Chemo goes for you. Perhaps you'll post in the Chemo threads?

Best, Ellie

kandispaz82

Hi Eleanora,

I just have my catheter port inserted (under the skin). So far so good. I start chemo on March 10 (2 weeks from now) so I will provide updates for sure as I go through the procedures. If there's anything I can do for you just let me know. You can find me on facebook if you have an account. Kandice Ripplinger. I'm in Vancouver Wa and my profile pic I am in a hospital gown. Looking forward to new friendships and support as we all go through this together. ♡♡♡

Eleanora23

HI Kandice - I will look for you, here in particular and wish you the best of luck in starting chemo. Please do update and it looks like the "starting chemo this month" threads can be quite useful.

I actually am doing surgery first as my tumor was around 4-6 mm and then chemo, however I have to get this entire mess with the conflcting reports on my HER2+ status before I could feel comfortable with moving forward with any regimen.

Maybe I will write the mods directly for help in getting directed to where to post here as I haven't heard from them, yet (they put a message here but it was for you).

Again best wishes and let me know how it goes. You can certainly PM me too. I haven't decided if I can be public with this on Facebook but I think for reasons of work I cannot be.

Hugs, Ellie

mustlovepoodles

Eleanora, don't feel like you need to put your breast cancer journey all over Facebook or any other social media. It's your story to tell, when and where you decide.

I'm not particularly comfortable with Facebook. Call me old school. Or just call me old, I can take it. I think I have 30 Facebook friends, which includes my 4 sibs, their spouses, my mom, my DH, and 2 adults kids. I do not "friend" anyone I work with, ever. Still, despite that all my Facebook friends are pretty close, I didn't feel comfortable putting it all out there. I didn't want to be the subject of gossip. Instead, I decided who would be my inner circle and contacted them. I also requested that they not discuss this on Facebook, and for the most part they haven't. Only a couple times has someone alluded to "my struggle", which I just ignored. So far, this is working for me.

SpecialK

kandispaz - I would remove your actual name from your post - this is a publicly searchable site, so you don't know who is looking at it.

Rockym

Ladies, on BCO you can post anywhere you like. Simply go to All Topics and whatever topic is of interest to you you can read and jump in. I believe I started with Not Diagnosed, But Worried, then I moved to Just Diagnosed, next it was August 2011 Surgery and then later spent time in a Chemo group. You are also welcome to start your own thread on any of the subtopics. There were many times I had questions and wanted to know what others thought. It began with a question about chemo or radiation and then it went on for a bit. I know one of the ladies started a topic on what was ticking them off and that thread is still going almost 5 years later. Good luck.

Eleanora23

Thanks for your suggestions about topics. And for raising the issue of privacy. I have a bunch of stuff going round and round my brain, but I will try to start with lumpectomy louge, as I am going to surgery soon, and then trying to straighten out my conflicting HER2+ results, which I just discussed with the surgeon being rerun by a completely different lab.

mustlovepoodles

They will fully test your tumor after the lumpectomy. They will certainly be able to sort out your HER2 status. Don't be surprised if the pathology changes. Sometimes it does. Mine did. I went from ER+/PR+ to ER+/PR-, which is considered by many to be a more aggressive cancer that's less amenable to treatment. For me, it made the difference of having LX and rads only, to LX and chemo. (I've had a BMX now, but only because I have 2 serious gene mutations that probably caused my breast cancer.)

Please do join us in the Lumpectomy Lounge. It's a fast moving board with a lot of ladies who are extremely welcoming, knowledgeable, and experienced. You can pretty much have any question answered there.

Eleanora23

If I had not written before (finding hard to keep track of everything) thank you for your entry..must love poodles (that I humorously see written as mustlove poo)

ChiSandy

I think “mustlovepoo” belongs in the “Constipation” thread.