Questions Questions

 Yay! Well, as yay as it gets around this stuff, :P I think waiting to see how you respond is a really good call on the work front. That's excellent news <3 

Hello InkPetal.
I think Im pretty happy with what will be happening. Ive been given a plan of 12 x weekly Paclitaxel and 18 x 3weekly Herceptin, then radiation. Im also going to try the cooling cap thing. So Im in it for the long haul. Im hoping to be able to work during my chemo but will have to wait and see how I react to the first session I guess. 
I haven't had my "education session" yet and still waiting on a starting date. 
Ive just finished all of my bone/CT/heart scans and all is really good so Im feeling a bit lucky at the moment. 
Thank you for asking after me x

Hey @AdrienneSands,

Just wondering how everything went. I hope you're feeling organised and satisfied with your plan if you've decided on things yet. Probably some big decisions to mull over and we're all around if you need to clarify, vent, or rubber duck debug. <3

@jonessa I just wanted to pop in and say welcome to the online network. 

I found out by accident that my oncologist answered emails.  I found sending questions to him and receiving back his replies really helpful if I was worried about something.  I found his prompt emails really helpful and reassuring and when necessary re-read them, sometimes in the middle of the night.  Good luck. Karen 

Hi Adrienne,

This is my first visit to this site.

InkPetal has given very good advice, I wish I had taken the time to go online prior to my appointments and treatment (radiation) I was diagnosed in Feb. Lobular cancer and sentinel node removed (R) breast with good result. One month of radiation followed (if you are having radiation ask your Oncologist if you are suitable for the 1 month treatment rather than 6 weeks) I am now on Tamoxifen and experiencing a lot of side effects Hot Flushes,dry skin, joint swelling and pain and the worst not sleeping. Ask about the side effects of treatment and medication be prepared.
I wasn't prepared for the emotions and increased anxiety once I returned home, I had never experienced this feeling (being a registered nurse didn't help). I live on an island (population 1,450) 500 kms from my specialist so had very little support, no yoga over winter, no swimming pool, only a visiting psychologist every 2-3 months . I read about all the programs and support groups and felt very alone. Finding out about anxiety management, and support groups prior to experiencing it would of been a great help. 

Take a support person who can listen and ask questions, I couldn't remember much of my Oncologists conversation so it was great to have someone to explain my outcome and reassure me

Take care 
Sally

Hi Adrienne,

My husband is a real numbers person so I take him with me to every consult. He asks about numbers and percentages, like what is the real benefit of this drug, what are the stats on survival and recurrence and so on. This all just goes straight over my head and he explains it all to me on the way home. I also ask about the side effects I am having and how long I should wait for them to settle down and/or subside. I'd also be asking about bone density testing, how often should I have it. There is also research out that says we should stay on Arimidex for 10 years instead of 5 for a better outcome!! I mentioned this last time and the onc said it was still a wait and see approach, especially as I have just started on the journey. 

I suppose it is all so personal, depending on your own circumstances and everyone reacts to a drug in different ways. But if nothing else, write yourself a list of questions and add to it as you think of more to ask and take it with you on the day. I have found both my rad and med oncs to be patient and willing to listen and answer any questions I have had. I'm sure you will find yours the same. Also, if I have an issue, I mention it to my breast care nurse. If she doesn't know, she contacts the relevant onc straight away to get the answer for me. 

Good luck ... let's know how you go.

Hugs

San-Dee

Good catch Iser!

Definitely ask about and discuss the risks of their recommended treatment plan and other treatment options too.They'll touch on it, they have to have you fully informed by law to go ahead, so if anything is unclear at all don't be afraid to chase it down. I was like a dog with a bone when they mentioned the "chance of giving you Leukemia" so casually it were as if they were telling me there'd be tomato in my salad. Yipes.

You have options, what they recommend isn't the last say, you can explore those.

Good afternoon Adrienne, 

I don't know where you're at, so I'm guessing you're going in to arrange your chemotherapy and am going to run with it because it sounds like you're time pressed.

Get all the contacts jotted down first. Your oncologist and oncologist's registrar's name, number, and office hours. Get the direct phone number the the chemotherapy bookings office (My hospital calls them "day therapy") too so if you have a last minute bump and are delayed or can't make it you can call them directly. Ask if your oncologist accepts over phone consultation outside of appointments about side-effects (and who to contact if not) and ask who to contact after-hours.

They should tell you what kind of chemotherapy it is, what you can expect from it, and discuss how it will be administered (port? drip? tablet?) including intervals (get your schedule). These are things nurses also had me confirm every session, so it's worth having noted somewhere. Ask if there will be an orientation session or if there is an information day you can sign up for. You will probably be sent for an orientation around the area you're having chemotherapy, and have an information session covering a lot, it will repeat a lot of what you hear in your appointment but is worth going to.

If they don't give you an information sheet with a printed list of side-effects and what to expect, ask for that. The meeting should be really comprehensive. You can read through the side-effects right there and ask about how to treat all of them if you like. Take in a pen and note book, jot things down, and if they go to fast - just tell them to repeat. Don't hold back on that. The one thing I'd tell myself before going in to these introduction meetings is that you're allowed to tell them to take a breath, and if they suggest something you're not comfortable with you really can just say no at any time.

You will have to go for blood tests before every session, so ask where pathology is in the building, or if it is external get the address. You may be interested to ask about things like dietary change, where you can find advice from a dietitian. You should definitely ask about anxiety management, a light medication to take the edge off the nerves for the first session really does help, and ask about mental health services contacts even if you never use them.

If you're headed to a radiation consult it's half as complicated, they really will tell you everything you need to know. Ask about what you can expect in the way of pain and how to treat/manage it (my consult totally spaced on that area and I almost left without knowing).

I really hope that was helpful. I'm sure other ladies will chime in with things I've forgotten. Best wishes for Tuesday!

xo Rebecca

Ask if there is more than one option on offer and the % against success. The first option my Onc gave me was only offering 3% so I asked what else are you offering.

It's daunting the first appointment. Hope you've got someone with you as two sets of eyes and ears help.

Good luck and take care