My pathology report is SCARING me...please talk me down?

Hi Greenae, Redhead covered it. I pulled my list of question from both sites and customized and added as needed based. One think someone told me early on on this site and I continue to follow "You are the Captain, etc of your ship and everyone else has a job to do on your ship and will bring their expertise." If you don't like one of the staff, get rid of them. With that said, do remember they are the experts but always seek a second opinion if needed. And force them to communicate, communicate, communicate.

Thinking of you and you are gonna beat this.

be sure to take your list and someone to listen as well

hard to say what will happen on the first visit , sides I was in a daze and really not sure!  but they did set up appts for scans and such.  Not really sure if any of them occurred on that first visit

try to sleep tonight, be thankful the dumb storm is not an issue for you~~

Green, at my first visit the BS did a brief exam, went over the results that we already had, discussed the probable stage and what my surgical options would be. She discussed referrals. I asked her about other scans (as I was node positive) and she agreed to have her staff set them up on our way out the door. She had a copy of the path. report and addendum for me, which I appreciated, and we discussed my ER+ status as well as the implications of my nodal status, in detail.

It was mostly a lot of discussion time and the overall appt. was about an hour.

At the next appt. she reviewed all the the test results that had followed and was helpful in showing me the bone scans, MRI, etc., and going into detail as to what everything was, orienting me to the images, etc. At that appt. we also talked in more detail about my concerns with surgery, timing of surgery, recovery, etc.

Do record these consults if at all possible. I found it extremely useful (and still do) to be able to listen to these and take notes of further questions, etc.

Good luck tomorrow.

Green, I felt the same way. I didn't even know my hormone receptor status going in to the first consult - that was part of what was in my addendum. I knew it was moderately aggressive and fast growing - and that it was in my lymph nodes.

One of the dirty little secrets about breast cancer is that we all wait for each piece of the puzzle - it's not a tidy scenario wherein you've got all the information about your diagnosis, prognosis and treatment wrapped up in a tidy package. You get one or two bits of info that answer a couple of questions but at the same time learn that more tests are needed to address another piece of the puzzle.

It really does fray one's nerves - badly. And it seems that we have to face up to a lot of pieces of bad news for every crumb of good news tossed our way.

All I can say is that science gave us Xanax and Ativan, etc., for times such as these.

I'm hoping for the best for you tomorrow. In the meantime, try to breathe, maybe take a long, hot bath, maybe go outside and throw some snowballs - hard - at some inanimate object.

We're all pulling for you and hoping the best and we know what a tough, lonely trek it is. You have lots of cyber shoulders to lean on.

I second FunThing's advice re: 2nd & 3rd opinions. Even if you think you like the team - get another view point. It's YOUR body, YOUR life. YOU owe it to YOURSELF.

(End of lecture.)

Green - I hope by now you're heading off to sleep. Rest well.

Re: 2nd/3rd opinions. Just keep an open mind. Sometimes people are highly recommended, have done well for other family members, but just don't get our personal concerns or we just don't click with them. These are people you need to have absolute trust and openness with; the personal element matters tremendously. I learned this the very hard way. In the end, I'm with a wonderful BS. Not only is SHE terrific but her staff lift my spirits with their kindness and skill. I know how lucky I am to have her. I hope the same for you.

So no, you don't need to start searching for a 2nd or 3rd tomorrow but please DO sit with your impressions, listen to your recording of the meeting, take notes from that recording. Watch how she interacts and how she reacts to YOUR needs.

As for your husband: Shall I send mine to give him a short course in how to be a good cancer husband/partner?

If your husband will read it, the book "Stand by Her" has a lot of good advice, particularly regarding mindset and what the wife is going through. It's NOT perfect - I told my husband to discard a couple of rules the author laid out - but it is a really good start. It's widely available, including in public libraries. We've been dealing with all this since late August and S. still picks it up and consults it from time to time. It's been a good tool for opening up some conversations we needed to have as well. I hope your husband will read it and learn from it.

I can't imagine dealing with a recalcitrant spouse at a time like this. I hope yours comes around and gets with the program sooner rather than later. If he doesn't, you may find it helpful to have one of your MDs talk with him, or possibly a nurse navigator, although as an 'authority figure' your MD may have a better chance of getting through to your spouse.

If you find his attitude is distracting during your appointment/s just ask to see the doctor privately. You really, truly need to be able to focus at this time on yourself. While your tumor is mercifully small, dealing with triple negative is work and you need to be able to do that work without distraction or additional emotional burdens beyond those that come with the diagnosis.

My thoughts and hopes are with you.

Hi,

I hope your appointment is a positive one. I can relate to the denial on the part of the husband. I guess they have their own coping mechanisms too. I wish my husband would have taken an Ativan or Xanax. lol I wish there were more online support groups for men. You know, what to expect and what do when your partner is waiting for test results, surgery, etc.

Good luck tomorrow. I live in NY too. I am in the Dutchess/Putnam area.

Take care,

Nancy

Hi there -- I wish you the best for today  I've been following along but not saying much. I am so in your corner, realizing how nervous you must be. I had mine last Friday with Dr. Laura Klein out of Valley in Ridgewood, NJ  and all went well. And a plan was laid out. That sure did help.  Please make sure you take a tape recorder with you. This is invaluable. I listen to it all the time and it gives me strength to go on.  It is so important to get the right surgeon and for you to be able to communicate with them.   My two kids were with me since there is no SO or husband at this moment in time.  It was a very positive appt. with lots of info and I know now where I  have to go in this journey I didn't want to take. Dr Klein and staff were incredible and this is major for you to be able to trust in your doctors and staff and take their feedback. I didn't get a second opinion because I knew as soon as I walked into the hospital, that was where I wanted to be treated. Communication is key in this journey.  My kids and I came out of there feeling so hopeful and positive.  I won't go into details at this time of my dx, but you will be in my thoughts this morning and I wish you well.  Anything you want to ask of me, feel free. PM if nec.   Shirl

Since this appointment is with a breast surgeon and your pathology report is indicating triple negative results - there are a couple of possibilities for what will happen at your appointment today.  Your surgeon will likely discuss surgical options and possibly offer BRCA testing.  Someone earlier indicated ordering an Oncotype Dx - that is not available for ER- patients, it is only approved for ER+, so that would not apply.  Also, testing for systemic treatment, if it is indicated, would usually be ordered by your oncologist, not your BS.  So, things like MUGA or bone scans are usually ordered by the med onc.  Surgeons would likely order an MRI to check both breasts, or other breast related imaging, but not usually body-wide imaging.  Depending on the recommendation for systemic treatment - which is often given even for small TN masses because there is no adjuvant hormonal therapy to be taken, it may also be preferred to give chemo prior to surgery, to be sure chemo is working.  I would definitely talk to a med onc before you make any surgery scheduling decisions. If neoadjuvent chemo is recommended I would advise asking for a sentinel node biopsy (SNB) prior to starting chemo so that you have a more solid idea of your nodal status.  This can be done when a port is placed if it is decided to do chemo before surgery.  As far as recording your appt., I have advised people to do that if they feel that they are likely to miss something, but I never did it myself.  I felt extremely focused and did not feel the need to record anything, my docs took their time explaining everything, but my treatment path was not full of options, so there was not a lot of choosing to be done.  I also did not seek a second opinion, as I was very comfortable with all of the physicians treating me, and still am, but agree that it is important to feel comfortable with your docs and also with their recommendations.  My husband and daughter came to the first BS appt., but I attended all subsequent appointments by myself.  My husband attended the first med onc consult but I attended all subsequent appts., except for chemo days, by myself.  It is important to do what you are comfortable with - if you are distracted by others, go alone - if you feel more comfortable with several people there to catch anything you think you might miss, take them.  If those people don't happen to include your spouse, so be it.

Many of my scans were ordered by my BS rather than the MO - approaches DO vary. And despite being quite focused and having my extremely focused husband at most appointments, we've found the recordings invaluable. Recording allows both of us to focus on the consult rather than trying to take notes. It also allows us to review statements word for word. It's rather interesting to realize how much we can miss or misunderstand in these situations.

Re: 2nd opinions - tumor board or no, I found that I wasn't being offered all the options available until I went for a 3rd opinion outside of the hospital group that I'd been referred to. Group think is a very real phenomenon, even in medicine.