Horrible first Dr appt

SavedbyGrace1972

So today was my first appointment with the surgeon and I'm so upset, confused and hurt. First she was over an hour late for the appointment then kept asking me why was I there. Seriously!!!!??? I'm like I've been told I have IDC grade 3 malignancy and she's like who told you that? I usually do biopsy. Well the radiologist already did your biopsy. Ok I have the report. Let me look a thing the tumor. Ok I see it.

She didn't go over the pathology report with me which by the way revealed that mycancer is HER2 positive!!!

Now I do know I need genetic testing and a breast MRI. As far as she knows nothing can be done until I have the other tests. Well really? I could just cry. Please tell me how this works? My entire body aches.

My cancer is grade 3 and HER2 positive and no one wants to do anything or know anything! Both of those means it's an aggressive form of cancer!

I'm putting my life in the hands of the one who gave me life and if it's my time to visit him, I'm gonna be ready. If anyone here is in the Atlanta area and cantecommend anyone please do. Thanks for any responses.

ElaineTherese

Saved,

It sounds like you really didn't hit it off with this surgeon. Seeking a second opinion and/or a new surgeon would certainly be in order!

Sometimes, additional testing helps your doctors plan your treatment. Before I started treatment, I had an MRI, a PET scan, a heart scan, and a port inserted. The MRI and PET scan showed that I had one node that was compromised but that the cancer hadn't spread elsewhere. They also showed that my tumor was big (5 cm), which meant that they recommended chemo before surgery.

The heart scan served as a baseline because my chemo (Adriamycin) and targeted therapy (Herceptin) can be tough on the heart. I had a port inserted because my medical oncologist doesn't like to do Adriamycin + Cytoxan through a vein, plus I was going to be doing a year of treatment (Herceptin).

I know that it is hard to wait for treatment or surgery to begin, but it may be the case that your doctors recommend chemo first. In that case, your first treatment doctor would be the medical oncologist, not the surgeon.

((Hugs!))

Beatmon

I think you need an oncologist to run things..and probably a different surgeon!

Anonymous

Agreed. You need an oncologist on board now. My surgeon shared my path report with me and all he said was "it's aggressive", but since it was high grade 1, it sure wasn't aggressive. His words terrified me till I did further research upon receiving the initial path report. Skill in surgery doesn't translate to skill in patient relations.

Luckily all he had to to was put in my port and later work with my PS for my BMX after he performed the excisional biopsy; I worked much more closely with my MO for 5 months for chemo, and then of course AIs, follow-ups, etc.

I appreciated his skill, and that is why I continued to use him. But as for interpretation, knowledge about cancer, etc.--I would never have relied on him for that.

Claire in AZ

LBoyMom

SavedbyGrace -

I got my results Monday. I was in horrid shock and scared to no other. Yesterday I met with “my team.” First the surgeon who is incredible. Then I had to go watch videos on different parts of treating breast cancer. During this video time is when the “tumor board” met (I told them that’s a horrible name and they need to rename it). It’s made up of oncologists, surgeons, radiologist etc that discuss my case. They reviewed it and came up with my game plan plan. Then the oncologist came in to talk to me.

These folks are amazing. Most of my fears have been put to rest. It’s aggressive, sure. But in their words aggressive usually responds beautifully to chemo. So I will do chemo for four months and then at minimum a mastectomy. I do need to go get other breast (right one) a mammogram today and ultrasound b/c radiologist on tumor board saw something he wants a further look into. Then I will do PET scan, bloodwork and get a Port put in. Even if there is a cancer on other breast it won’t make a difference of treatment. I just don’t wanna not to hear I have more. And once scan comes back clear (let’s pray!!) I’m 100% ready to move forward.

Maybe I’m being too optimistic and naive but I walked in expecting them to hand me hospice brochures and they all were like this is early, treat to cure.

I am so sad you did not have a good experience. I would suggest talking to your own PCP or Ob/Gyn and see if they have any recommendations. Or reach out to friends, members of a church to see if they have any recommendations.

I still need to tell my parents and In-laws.

Keep us posted!!

SavedbyGrace1972

LBoy where do you live? I want to relocate to where you are and receive my treatment there!!! Sounds like they are on the ball!!! So glad things are working out for you!!!

Thanks for everyone's replies and advice!!! This is a scary ordeal and having caring, trustworthy and knowledgeable doctors help ease the fears.

Melrosemelrose

SavedbyGrace- Sorry about your experience with the surgeon. I agree with others, go see an oncologist (and if you are wondering, there are oncologists who specialize in breast cancer) and let doctor help you find a breast surgeon that you are comfortable with. It's not unusual to get a second opinion nor is it unusual change doctor. I'm not sure where you live but hope you are able to connect with a medical team that can give the support and information you need.

LBoyMom- Glad you checked in after your appointment and are comfortable with your medical team.

Keep us posted and post any questions you have as time goes on.

Hoping for a restful and peaceful weekend for both of you.

LilacBlue

I relate Saved. My first surgical consult did not go well, zero compatibility or my having any sense of trust. When I got home, realized I would not want this mediocre surgeon to slice me a orange section, let alone my breast. I relayed this to the breast nurse who called to set a surgery date and she gave me the name of an amazing breast surgeon. That consult went very well and I knew in my heart this was what I wanted - to be in these talented, knowledgeable and safe hands. Trust your gut and get a second opinion. So glad I did and no regrets.

EastcoastTS

I also went with my 2nd opinion surgeon. Your gut feeling and compatibility with the doctor are key. Also for the MO and plastics (if you require). I talked to three plastic surgeons.

Plastics I spent almost a year with. At my last appt, we hugged three times!

{hugs}

houmom

Was there a nurse navigator at the hospital where you had the biopsy done? They brought her in at the end of my appointment and she said she was available to help with finding surgeons etc. My PCP actually lined me up with my BS, she called in a favor to get me in the same day my biopsy results came back so I didn’t need to call the nurse navigator but she would have been my first call otherwise.

IntegraGirl

I agree with other comments: get into see another surgeon. This crap is stressful enough without not having confidence in a key member of your team. Also, I'm sorry you're here. It sucks kiddo .

SavedbyGrace1972

Thanks everyone for your advice. For those of you who sought second opinions, did you go before you had scans? The surgeon that I saw on Thursday ordered me a bilateral breast MRI and is sending me for genetic testing. I don't want to delay any of the treatment process and I am starting to grow weary.

houmom no nurse navigator was available or if it was I have no idea who it is. Hopefully I will find someone who can help me.

EastCoastTS- I wish I could just find one stop shop now I am having to shop around for all these different physicians and stay healthy. Boy this is really something else.

NotVeryBrave

Saved - Most "cancer centers" have core groups of doctors who work together. My OB/GYN sent me for my diagnostic stuff after I found the lump and he confirmed it. He wanted me to see a specific BS before the biopsy even though a radiologist did the biopsies. She went over the scans and explained what didn't look good and she called me with the results. She also referred me to the MO and RO.

I had read a lot about getting second opinions and flat out asked her what she thought of that. She agreed that it was a good idea. I saw another BS as well as another RO. I figured my chemo was pretty standard for triple positive so I never sought another MO opinion.

After chemo was done (pCR!) - I ended up seeing both of the BS again. And I went with the second one. I just felt more understood and more comfortable with her.

Cancer is scary and aggressive is never what you want to hear. But you really can take your time to make the best choices for your care. Good luck.

edwards750

Let me make it unanimous get thee an Oncologist and another BS. Your relationship and confidence in your medical team is paramount. There are a lot of doctors out there so shop around. My sister lives in the Atlanta area. Idk the name of her Oncologist. I do know she has utmost confidence in her. She is very close to the vest about her personal life.

I picked my BS from recommendations from friends who had used him and also his reputation. He is a good doctor but a bedside manner that needs work. Fortunately his staff is awesome.

West Clinic is the top rated cancer clinic in town. It is one stop shopping. Everything you need to test and have surgery from is in one huge building. You literally go door to door without leaving the building.

One piece of advice - be your own advocate. Do your homework and don’t hesitant to ask questions or ask for explanations for their decisions. After all it’s your life and your call.

You will get through this process. We are all testaments of that. Don’t be afraid to ask for help from friends and family.

Good luck. Keep us posted.

Diane

SavedbyGrace1972

edwards750 thanks for the advice. Where is west clinic? You all have definitely convinced me that I need to get a second or maybe even a third opinion. This journey is one that no one wants to travel yet the road is still rocky. I'm going to stay positive going forward. Hoping to reach out to others in the area who have traveled similar roads and gain wisdom and insight from me and all of you all here. Thanks so much for taking time out to answer my questions. We are in this together and we are going to win!

swg

Hey there--so sorry you're having trouble with your doctor.

ABSOLUTELY GET THE BREAST MRI AND GENETIC TEST.

I know you're panicked..but honestly, it probably took years for you to develop your tumor. A delay of a few weeks won't hurt.

It takes time to compile a good team. MUCH BETTER TO WAIT UNTIL YOU GET THAT IN PLACE, SO YOUR TREATMENT DOESN'T GET BOTCHED.

And by botched, I mean..

My initial dr wanted to do a lumpectomy with radiation right away. Then a friend recommended another surgeon. SHE sent me for a breast MRI and THANK GOODNESS because a SECOND tumor was found in the same breast as the first. It wasn't picked up in the initial mammogram and ultrasound.

Now, imagine if I had done the lumpectomy..the 2nd tumor could've grown out of control before I'd even known about it.

YOU DO NOT WANT THAT TO HAPPEN TO YOU.

So..please, just breathe..you'll be fine...and find a good team, and get your diagnostic tests first, so your doctor knows what he/she is dealing with.

Genetic testing is important because if you're BRCA1/2 positive, you may want to get a bilateral mastectomy and remove your healthy breast as well.

I didn't, because my tests were negative, and I'm glad I only went with unilateral.

EastcoastTS

Saved:

I'm not the most experienced but you asked about the 2nd opinion deal and MRI. I went with the MRI with my first BS. So go ahead and keep with that schedule because you'll need the MRI regardless of who does it. I wouldn't go into surgery without an MRI because mine also noted a second area of possible concern (which turned out to be benign but still glad I knew). That and your biopsy path report + genetics should give you a lot of info with which to make a decision.

Anyone you talk to for 2nd/3rd will ask for the scans and biopsy path, etc. My nurse navigator with the first BS was very nice and helped me get scans to my 2nd O (which was in no way associated with her facility and was in fact not in the same state). If not that, the 2nd O. facility will call and get them for you. I don't mean to make this sound crass, but I think they want our business, and my 2nd O place (MD Anderson) got all my info without me having to do much but provide details on where the results were.

AGREE with what's been advised here. This may not relate to everyone's situation but for mine, they said: this is typically an emotional emergency, not a medical one. Meaning: you have a little time to gather your team and get opinions and make decisions. I had almost two months between diagnosis and surgery. I just could not get all this done any faster and make the call about what to do (I chose BMX).

Ask anything you need to! We'll try to answer.

SavedbyGrace1972

EastCoastTS Thank you so much. It definitely feels like an emotional emergency indeed. Since finding out I feel as if my life has come to a stand still. I am most certainly going to get my MRI and genetic counseling/testing Friday because I figured I would still need those results, so yay. It is also getting a lot easier to tell family and friends of my diagnosis. As long as I warn them not to cry first we are all good, lol.

Thanks so much for your encouraging words and strength. My plan is to finish 2017 strong as I started and enter 2018 batting 100!!

EastcoastTS

Saved:

That is a good plan on all points! Get genetics and the MRI. If the waiting game for results is too anxiety-inducing, ask for something to take the edge off. I never had before but did take something during my initial diagnosis period. At least for sleep. I simply found myself Googling at 3am too often. Your PCP can honor this request and will certainly understand it. Mine did.

This is what I did for the overarching/high-level plan. My hubby and I just said, well 2017 is pretty much shot (I was diagnosed on 1/4/17) and that has been about true. Although, we've still done some fun things. Two great trips, etc., and you know what? Life has gone on!!! In between surgeries (2) and new med and a billion doctor appts and a new outlook on life. Life has gone on.

It came to a standstill for me, too, and when it started back, I was changed. But I like the new me in some ways better than the old me.

Take a deep yoga breath when you feel it getting to you.

SavedbyGrace1972

EastCoastTS-

Thank you so much for the encouraging words. Google is definitely one that I spend a lot of late nights with. Its funny because this year my husband purchased our family season passes to WDW. A year of Disney magic. We've only been once and have another trip planned for right after Christmas and another for February. Now I wonder which of those trips I'll be able to take. Plus I am helping my mother fulfill her bucket list travel items which means a trip to NY city and a cruise to Bermuda this upcoming June. She asked me if we should cancel. Sadly I don't know what to tell her. Ugh. It is so hard not being in control of your tomorrows. But soon I will get answers. I've just gotta be patient.

EastcoastTS

Yes, hold on travel plan changes because you may very well be able to do all. I flew about 10 days after BMX. Traveled with tissue expanders, etc. Trip very soon after Exchange surgery.

My mom had a lumpectomy and had wine with lunch after the procedure. I'm sure the doctors would have croaked if they knew! But she was 73 then (doing fine 10 years later) and WTH, I guess.

Keep us updated on your progress.

SavedbyGrace1972

EastCoastTC, It is so comforting to know that you all are doing so well after your surgeries and treatments. I was reading another thread where woman actually worked throughout chemo treatments. Sounds like a nice distraction and life doesn't stop because of this disease. Right now I am trying to get ready for Christmas day because it is coming rather I like it or not, and I am just praying for a Christmas miracle right now for all of us fighting!!

mustlovepoodles

Definitely keep your travel plans. You may be surprised at what you can do. I managed to get in a business trip between LX and chemo, and a short family trip at thanksgiving between chemo treatments. I had a business trip to San Diego scheduled about 7 weeks after my BMX. I had all kinds of complications, but I was STILL able to make the trip. So you just never know how things will turn out until you're there. Don't be quick to cancel plans just yet. You may really need those trips.

SavedbyGrace1972

Mustovepoodles, You are probably right!!

Anonymous

I have read many posts through the years of women (and men, probably too), on these boards who have done trips during treatment. It depends on treatment and how you respond to it, but often you can work your treatment around your travel.

I continued to go to bikram style yoga throughout all my surgeries and my dose-dense AC and weekly Taxol tx, and radiation treatments too. I had to modify some of the poses after surgery, but I didn't miss much of a beat in my yoga practice. I didn't travel during chemo, but hubby and I drove 2 hours rt for each chemo, and after each Taxol tx I went hiking before we drove home. Worked through treatment, too ( have a flex schedule since I teach at a Univ.).

It's amazing what we can do, and how uniquely we respond to treatments, and finally (for me) reading tips about alleviating side effects helped me feel (mostly) okay during all treatment.