My first appt next week . What can I expect?

Freygea

I am new dx with IDC 4 cm mass er and pr + (awaiting fish result for her-2). It appears my appt is at a radiology center but was told there will be a "cancer team" that will discuss options with me. Am I assuming wrong that more than likely I will end up getting Radiation before anything else?

I have had mammo,,ultrasound and core biopsy so far. Is it common for them to do CT or MRI before determining what type of treatment to do first? I am 51 and have only had one menses in 2 years so I am assuming I am post menopausal.

I have no idea what to expect from my fisrt appt.

Professor50

Hi Freygea, I know this is probably a horrendous moment in your life. I am so sorry that you are going through this. I can at least promise that things are often much less scary once you have a treatment plan in place. When they tell you you are going to have a team, they probably mean it! I was surprised (and relieved) to find out that, along with my OB/GYN, I had a breast surgeon, a medical oncologist, & a radiation oncologist (all of whom have a nurse that seems to run everything!). The radiation oncologist has a big team of technicians as well. My first experience was actually with my surgeon (but she and her nurse set me up with everyone else). It seems like the first steps in treatment will depend on your team's recommendations and your own preferences. You may be having surgery first, or you may be receiving neoadjuvant therapy (chemo) to shrink the tumor prior to surgery.

I remember the days between my core biopsy results coming in and my appointments with my surgeon and oncologists were awful: So much waiting and knowing very little. I will keep you in my thoughts and hope for the best. As everyone here will tell you, it is best to bring someone with you for these meetings. Someone who can write stuff down (or even tape the conversations). It is hard to take it all in but it does get easier once things are in place.

Take good care!

Laura

Freygea

Thank you for the reply. I really am hoping my nerves settle a bit once I know what plan is in place. The not knowing is driving me bonkers..hehehe. I have a pad and paper and writing down questions that come to me now so i can read them off the day of the appt.

My biggest worry is getting to and from appts as I fear my husband loosing his job if he has to take off too much. I do have a great neighbor that has already offered to take me anywhere i need to go. My appts may end up being 60 miles away..bleh.

It will help to know what they plan on doing so i can get transportation etc etc set up. See...i find myself worrying about everything else around me and that is probably not a good thing.

Freygea

Bah..I spent yesterday looking at wigs,scarves and hats. Hahahah! I do not even know if I will be getting Chemo...Someone smack me !

Professor50

Ah! That's okay. I did the same thing. I even bought this awesome looking hat. I didn't have chemo but I still love that hat. Just hang in there. I remember doing all kinds of searching for information about reconstruction, mastectomy recovery, chemo, etc. I ended up not having any of the treatments I researched but I did give me a profound understanding of the challenges faced by so many and the seriousness of what I was facing. It's really okay to let your wheels spin at this moment in time. It will get better. (((hugs)))

Freygea

Thank you for making me feel less silly. I did go today and purchase a good old time calender book. It has the little box type days as well a pages for notes. I figured I can use it to keep track of appts,tests,etc.I found a few crochet patterns and knitting patterns for chemo caps and hoods. I think I will try to make one. If I never use it then I can always give to to another.

I am both dreading next Weds as well as wishing it would hurry up and get here. Today, I have been pretty calm since I kept busy reading up on IDC,shopping and cleaning. I am eager for a doc to sit down with me and give me my options and what to expect in the next few months.

Freygea

Called to confirm my appt and it is "all set" according to the receptionist. I did not sleep well last night and forced myself not to get up and clean the house at 4 am..lol. I am really setting myself up for frustration as I am expecting to get some more info at the appt regarding the type of treatment I will be getting. I just feel like I have been waiting forever to be able to get started. The dx was only last week but I started this whole journey in March.

I am in this "alright already..lets get this started" frame of mind. I know this whole process is a hurry up and wait kind of deal and I do hope I will settle in a bit once I know the game plan for at least the next 3 months. Being a retired Oncology/Hospice nurse is not a good thing atm for me..*chuckles*

Professor50

Hi Again, I know it feels so much like, "Hurry up and wait" !!! I think it is a brilliant idea to get an old timey planner! I had a terrible time keeping all my appointments on my smart phone when I was talking to people and making appointments while I was on the phone. A lot of juggling.

I hope you get some good solid sleep in the meantime and that the remaining wait flies by. It will definitely get better once you know what is going to happen and when...

wishing you all the best!

Laura

kittysister

The calender book is a very good idea. I wish I had done that. Had no idea all the appointments there would be. Good luck to you, Freygea.

Freygea

Thank you both for taking the time to reply. Keeping busy today housecleaning. My appt is at 1030 am tomorrow morning. I know I will be getting up way too early but at least i will not have to worry about oversleeping. : 0

Gah it is strange to be dreading something at the same time as wishing it would get here already. Hopefully I will have more info tomorrow afternoon. I will post what they plan and of course will probably have a zilion questions to boot.

Professor50

Freygea, I will be sending you warm thoughts all morning tomorrow. I know exactly what you mean about wanting it to be here but also dreading it. I felt so frightened at first. But once there is a plan it is so much easier. It is no longer this big scary mystery. It might still be scary but it is a scary problem to be solved. You can do it. Keep breathing and take very good care.

Laura

Beachbum1023

Freygea, sorry you are here, but it is the best place to be since we all get it. The waiting is the worst, much easier to handle something rather than nothing. And you will have plenty of things to keep you busy once the party starts.

I am finished with chemo, surgery, and rads and I have the summer off treatment. A great place to be. But I hope you have great news, and the treatment will be kind to you. Try to forget a bit of what you know, I think it would be difficult being on both sides of this bar for sure. But all of the ladies here will help so much, I made it through with a lot of kicking and screaming, but with a lot of love and support from the best ladies on earth. If I can help, please PM and I will be glad to answer anything I have learned from this side of the bar! Best of luck, it's a wild ride. Cheryl

Professor50

Freygea, Just thinking of you this morning and hope things are going okay!!

Freygea

Good morning and thank you! I arrived home late last night and fell asleep finally! My appt went "ok". I found out that I am also Her-2 + as well as ER and PR +.

The Hematologist has ordered a slew of tests and wants to start chemo next week. Realistically, I think the chemo will start in 2 weeks due to getting the test results and the port placed. He indicates at present, his plan is to do chemo, then for me to have surgery, then radiation and then followed by hormone/chemo .He mentioned Perjeta. ...hmmm. To be frank he seemed to be thinking out loud the whole time he was in the room. I was too tired to tell him to slow down blah blah blah. He is very nice but very hyper. (I was probably really scattered as well yesterday so the whole appt seemed like a tilt a whirl ride.

I am now awaiting a call back so I can get these tests completed . I hope to hear back today regarding when I get my port placed. I can honestly say these forums atm are the only place that seems normal in my life.

ACT causes hair loss yes? Guess I best find my some scarves. : )