1st Hospital Clinic Visit & Planning

Gears0715

Hi lovely ladies

Short story so far. Found a lump, got it checked & biopsied. Positive. My hospital referral has gone through & 1st clinic appointment next Tuesday.
I'm a "planner" in all things, I've researched my pahtology results, I've considered my work/life plans (I know they might not work out as I wish, but I have various options ready in my head). I've told my family, boss & co-workers what I can so far. I've prepared my paperwork & family history for the hospital. I've ordered Post surgery bras & have a diary started for logging doctors notes, feelings, side effects etc. I'm a rather pratical & realistic person so I'm not freaking out or going down the rabbit hole, I'm planning what I can based on the steps so far. ie. Surgery, lymph dissection are definately happening. Based on ER/PR+ Hormone therapy is probably a definate as well. Chemo/Radiation will probably depend on further test results but I've thought about both of those options as at least 1 or the other (or both) is likley.
My question is, at the 1st Clinic visit do they generally have some idea of a "possible" treatment plan. I know that they will need to do MRI/CT or something to further check what is exactly where, but would they have some idead or is it likely to be "come back for MRI/CT whatever & THEN we'll give you an idea of where we are heading with plans"?

BTW. Pathology report show "invasive Carcinoma (of no specific type). Malignancy in lymph node. 2cm Grade 3 mass (8/9 for Grade 3). ER+ 90%. PR+ 30%

I know we all hate the waiting
Huggggzzzzxzxzxzx
G

arpie

Welcome to the blog, @Gears0715 - sorry to see you here, but it is the best spot for getting support and answers to any query that you may have, from those who 'get it' as we've been thru it too.     It is always a big shock when the diagnosis comes thru - and you  are now on a very long treadmill .....

Yes, the waiting really sucks.  Do you have someone to go to your appts with you?  Just the physical support is good & also an extra set of ears that may 'pick up' on something that is said that you may miss.  I also record my appts on my phone, as 'backup'.  It is easy to miss something when you are pondering one statement - and they make another one that you may miss.

Well done on being so organised & efficient in the lead up to your treatment.  Do you live in a city or are you rural? (You can add your 'general' area to your profile, then others nearby may be able to point you to specific services available to you.)  If you are rural & have to travel more than 100k to appointments, you can claim 'petrol money' and accommodation expenses back from the Health Dept (Isolated Patients Travel & Accommodation Scheme) or similar.  Each state's is slightly different.

Have you decided whether to go private or public?  I went private for my surgery & ended up being about $6000 out of pocket.  I was advised of $4000 before the surgery ..... so make sure you ask your surgeon what the gaps are!  Most surgeons work in both areas.  I even had to pay $500 towards my pathology!  I went public for my radiation & didn't pay a penny.  My husband went public for his chemo & only paid the PBS fee.

If family & friends offer to do things for you - cook meals, mow your lawn, walk your dog etc - even tho you may think you are up to it - let them do it - it takes some pressure off you & gives them a way of helping you.  

They may do a bone density test. After you have your surgery, the lumps will be analysed and the pathology results sent to your surgeon.  The surgeon usually has a 'team' that he works with - a medical oncologist (chemo & tablets) and radiation oncologist - and dependent on your results, they will formulate the treatment plan then.  You will usually be called back a week or so after surgery to discuss the options.   If the nodes are involved, the chances of requiring chemo increase.    MRI/CT (I have found) is usually only done if they think it has spread further than the breast. 

Make sure you ask for copies of ALL your results and ask as many questions as you need to, to understand the results.  Take notes!  I have a BIG BOX that all my scans, reports etc live in - so I can grab anything I need & find it easily.

Make sure that your GP and all members of your team (once known) are on all of your referrals (even if you have to write them on yourself!) . It is important that the reports go to all of the team.  One may pickup on something that the others don't.  After each 'visit', a report should be sent to your GP, so vital they are on the list.

If you find yourself stressing about anything - ask if there is a counsellor or psychologist that you can see .... don't let it become a bigger problem by putting it off.  Sometimes there are 'wait times' there too .... which makes it all the more stressful!

I hope you have supportive family, friends & work colleagues around you - as many of us find the emotional/mental toll to be more difficult than the actual surgery & recovery!  Weird, I know!

Take care & all the best for your appt  xxx

kezmusc

Hi @Gears0715,

Welcome to the forum lovely.  @Arpie pretty much has it covered.  You could ask your GP to refer for the CT and MRI that way they might have the results for your first appointment.  My GP did the CT and bone scan  because it was in the nodes already.  Because I wanted a lumpectomy if possible and no body could find the breast tumour the surgeon got the MRI done to search for the sneakly litle bugger.
 The end up was lumpectomy, axillary dissection, chemo, rads, hormone therapy.

The surgeon may have an idea of treatment (this is not really their specialty though)  sometimes they are right and sometimes not.  But as Arpie said your case will probably go to the MDT meeting to get opinions for all sides.
You seem very on top of it all, so kudos for that. Well done. 
 Absolutely get copies of everything and a zillion questions.  If you don't understand something (there is a whole new language to learn) just keep asking until you do.  You are you're own best advocate along the way so don't be afraid to speak up.
All the best sweet.
xoxoxoxo

arpie

@Gears0715 - here is a link of things to consider taking with you to hospital! 

I was only in 'over night' with a lumpectomy, so only took few bits .... and the magazines were SUCH a bonus over books!  The ear plugs and eye mask were a GODSEND!

https://onlinenetwork.bcna.org.au/discussion/20232/hospital-bag-what-to-pack/p1

Afraser

Just ask. Anything and everything. It’s often good to have someone less immediately affected by the whole thing with you, as they are more likely to remember important parts of a slew of information, or to ask the questions you don’t think of. I reckon that how your medical team respond to questions is a pretty good indicator of how you will get on - open and helpful communication is a good start to working together. Best wishes. 

Gears0715

Thanks for the additional info
Hubby is working a long shift on the day of my 1st Hospital Clinic & he's recently used up most of his work leave by having a Heart Attack 4 weeks ago!! That's why I'd like to try to guage how "in depth" that appointment might be. If it's just going to be general info & booking for another test then it would be okay for him to miss that one. It'd be more important for him to be there for appointment/s where discissions would be had about actual treatments & treatment plans.

arpie

OMG @Gears0715  - I hope your hubby is going OK now!!  So sorry to hear that.

Do you have a good friend or someone else to go with you?  My sister in law went with me to all mine & was a godsend as my hubby has dementia & is no good at all!

It will probably just be to advise you of when you have to fast etc in the lead up to the surgery (do you have a date?) - maybe give your surgeon's office a bell & ask them - forewarned is forearmed!  xx

Gears0715

No I don't have a surgery date, I don't have anything from the hospital (this will be my 1st visit). The only things I've had so far is a doctors referral to QML for Mammo/US & biopsies, the pathology results were positive & so referred to PA Hospital. The only contact I've had with the hospital is confirmation of the appointment date & time.

arpie

When I received the positive news of my biopsy, My GP gave me the names of 2 Sydney surgeons (as I am rural)  - I googled them & chose the one I thought would suit me more - a professor in the field of Breast Cancer & surgery.   

My first 'hospital' meeting was with my surgeon & I was really lucky, I had the surgery 2 days later.  So If this is your first meeting, it may well be with the surgeon, so important to have someone else with you, I think,  as he will be discussing your surgery options. If you can't take someone with you,  definitely record it for your own record. 

They may mention future treatment (chemo, rads, tabs), tho these are not usually their 'expert field'.  Mine mentioned me going onto Tamoxifen after the main treatment was finished & it is pretty well the only tablet I haven't been on so far!  LOL   

He may well give you another ultrasound then & there too (mine did) so that he sees it for himself. 

All the best for Tues xx

Gears0715

Well, 1st visit done & dusted. Lumpectomy & full axillary clearance to Stage 2 scheduled for 12th December. The tumour is also growing into the skin & underlying muscle so that's gonna make surgery fun . The surgeon also mentioned that the QML radiologist flagged a "suspicious" area between 2 ribs at my sternum. I wasn't aware of that one. Hmmmmmmmmm
Surgery, Chemo, Rads & Tamoxifen have all been added to the treatment plan (I'm getting the full package. Well I do always say that if you're going to do something do it properly ). Really nothing I wasn't prepared for

Next week I've got Bone scan & CT scan booked for Monday, then pre-admissions clinic on Tuesday (they said 4-5 hours for that one!! Sheesh! )  I have a feeling that the scans might show something more, but we'll see how that goes. Grade 3 tumour with positive axillary lymph involvement in the initial Biopsy & also a region of concern at the sternum, lso have a low platelet count flagged on my 1st blood tests... doesn't bode well for a lovely contained & simple cancer. Hopefully it's all good, but as long as I know there's a "possibilty' of something, then I can be realistically prepared for it.

The week after next I have an MRI on Wednesday (I've agreed to be part of a research project that the hospital are running, they're trying to work out if an MRI will give enough evidence to diagnose cancer in a "less invasive" way than biopsies). Then surgery on Thursday.

And, today I cut my hair into a lovely pixie cut "in preperation".
Here we gooooooooooooo

arpie

WOW!  Looks like the full shebang!   It is good to have a game plan.

All the best for your Scans on Monday ... try not to pre-guess any of the results - difficult tho it may be.   Yep, hopefully all is clear.

Interesting about your research project - personally, I reckon an MRI should be a part of all the diagnostic bits!

I always reckon a short haircut makes you look younger!!    

Take care xxxx

kezmusc

Wow @Gears0715,

That's a bit de ja vu ish.  I had the rotten thing breaking out of the nodes and into the surrounding flesh.  Weird but they never mentioned it at the time.  The onc told me at pre chemo appointment 6 weeks after surgery.  That was as surprise.

@arpie is right.  Try not to guess what's going to happen and MRI should definitely be part of the diagnosics.  
That's a long pre admission appointment.  Maybe they counted in two hours of waiting time

All the best lovely.  Fingers and toes crossed for all your scan results to be nice and simple and clear.
xoxoxoxo

Gears0715

Thank you ladies 
I'm not "pre-guessing" the results, but because I'm an organised & realistic person I find that if I know of a "possibilty" then IF the result come back good it's fine, but if the reuslts come back bad then I can accept it as "well, I knew that might happen".
I did exactly that with the BC. I've had lumps before (I think every woman has a harmless lump or 2 during their lives). I had a new & different lump, & the doctor, the Mamogram/Ultrasound & the biopsy ladies all had "looks" on their faces when I had the checks, so I simply thought "well, based on their concern levels this could possibly be a really one, & it could possibly be in the lymph (since they kept checking & did a biopsy there too)!". Then when the doctor broke the news that the pathology came back malignant it really wasn't a surprise for me. Same situaion with the scans, I know that it could all be perfectly fine, but I also know that it "might" be more. So I'm better prepared, no matter what the results show.

  

shs14

@Gears0715 dropping in to wish you good luck with all ahead of you. You sound very brave and I can relate to facing the worst and being ready for it. One of my coping strategies though I tend to overthink and panic too!
 It sounds like you and your husband have had more than your fair share of hard stuff recently so I'm sending some white light your way. 
One suggestion that someone shared with us early on is that taping the doctor's appointment on your phone can be good to listen back to things and share with your husband if he can't be there. We recorded my first Oncologist visit and I listened to it months later and there were bits I'd missed or forgotten in the stress of it all! x

Elvena

@Gears0715 Best wishes indeed, have you sought second opinions re treatment plan? 
Eg  is one option to go for mastectomy straight up ?

Gears0715

Hey @Elvena
I don't feel that mastectomy is needed. The local mass is relatively small  (a little over 2cm at the first Ultrasound) & the surgeon is very confident with lumpectomy, he's the best at PA Hospital & is a specialist in Breast Conserving surgery. It's proven now that a lumpectomy is just as effective as mastectomy & IF there's recurrence later on it gives a bit more wiggle room for further treatment on a recurrence (lumpectomy vs mastectomy doesn't change the odd of recurrence).
I'm confident with the treatment options for the best outcome for me, given the findings so far