I just wondered if anyone has any ideas or tips what to ask the oncologist. I have my first appointment with them tomorrow and although I have lots of questions myself I was just wondering about what others felt was missed when they seen their oncologist. I like to be prepared and when I went to see my surgeon I had a few pages of questions with me for her and felt much better because I knew exactly what I wanted to know.
Any and all suggestions will be greatfully received. I know it sounds weird but I’m almost scared incase they tell me that I don’t warrant having chemo because I want to hit this bc with everything possible and give myself every chance for it not to return.
Thanks for your help
I have my first appointment too with the oncologist on Wednesday, I will be having chemo as I had radiotherapy 12 years ago. I normally just go in listen to what they say and then come home thinking I wished I had made a list so your posting is making me think I should also make a list, so any suggestions would help me too.
I am really scared about the chemo, how I will feel, what to expect, and the old one WHY ME!!!
I really enjoy reading the posts and as I only joined last week and although family and friends try and help its good to feel “I’m not the only one” thanks to you all.
Good luck Wendy tomorrow
It is scary… make sure you take a notebook with you, and write down stuff.
I’d ask (I have asked mine, but some I forgot, and I had to catch up in further appointments)
* Chemo + rads? both? why? (I don’t know you, but I like/need to know the why of things, especially if I have to live with the outcome)
* What chemicals (knowing allows you to look up the specific side effects, this change), with what schedule - 2 or 3 weeks?
* Is it possible to shorten the schedule if I am given a Neublasta shot (it stimulates white cell production in the bone marrow). That is, if you want to shorten it.
* What about the hair? should I try the cold cap? does it has a chance to work with the chemicals I’ll be infused with?
* can I plan Xmas and New Year with my family? can I make plan for travelling (if it apply)? can I have an extra week in the schedule, so I can a GOOD week during the Holidays? When should I be finished?
* How often will blood work be done, where? how long does the infusion take (half a day, a day, an hour)? Is it possible to do it at home, and is it better? When will I see you again, to ask further questions?
* what should I avoid? travelling, public places, buses, public transportation, kids, dental appointments…
* food to avoid or to use? wine?
* work? should I be on 100% off, or work part time? can we start on a 100% and decide when I see how I feel?
* Wig/prosthesis: is it covered by insurance, do I need a prescription?
* what after: Tamoxifen, reconstruction (when), Herceptin…
* Would a Hickman line or a cat port be useful? which one? what does the doctor recommend? (these are silicone devices implanted in a vein permanently, to help with the sticking needles into you. They are painless and easy, so if you are to have many infusions I warmly recommend them…)
That should keep the doc busy for some time… :)))
Good luck. Keep your head on, and it will work out. Remember: one day at the time.
*** I’ve edited the questions, to add the one on the hickman line. The doc will know what it is, and will explain it to you.
Thanks so much those tips are just what I’m looking for and on top of the questions I have myself I think the onc will have her work cut out for her.
When I saw the oncologist for the first time it was just after I had seen the surgeon with the histology results from my mastectomy and axillary clearance. Unlike you, I was terrified of the idea of chemotherapy as I had hoped to avoid this (I felt that I had given up enough already!!). I asked the oncologist to spell out to me how chemotherapy and radiotherapy were going to help my chances of cancer not reoccuring again. He said that not everyine wanted this information but he drew a diagram for me showing in %'s how things stood post-op and how the various treatments would help. These figures were based on my results so I knew they were about ME not out of a textbook! I personally found this helpful as it enabled me to make an informed decision about my treatment. It helped me feel more in control I suppose. I did go ahead with chemotherapy and have my 3rd epi this Wednesday.
It’s good to ask questions so well done for preparing yourself! If you can, have someone with you so there are two pairs of ears listening!!
Love and best wishes,
Thanks for your posts, they are really interesting and I will now go with questions instead of just sitting there trying to crack stupid jokes (which I do when I am nervous)
I am absolutley s***ing myself about having chemo, I had radio therapy 12 years ago and cannot have it this time.
Good luck with your oncologist appointment tomorrow.
I carry a small notebook and pen everywhere now, which I jot down notes if and when they come to me, it has developed into little sections:
It is amazingly useful.
I also asked my oncologist for a copy of the letter he dictated while I was there, which really explained everything he went through during the consultation.
Another useful factor was my OH, as he absorbed what I missed.
All the very best tomorrow
sorry I’ve no doubt missed you by now but I wanted to wish you well. I really hope your appt goes/went well today,
Let us know how you get/got on,
Hope today went well for you and all your questions were answered.
Many thanks to all you other ladies, it makes me feel like I’m in a little (well not so little I;m afraid!!) club and we all have something in common. All your posts have given me a list for tomorrow, I am definately having chemo and I think tomorrow will be to discuss, book the bone scan and get my starting date.
Many thanks again to all of you
Good luck for tomorrow - hope you get all your ansas you need and a starting date very soon for chemo - scary that might be, you will be fine during it. It is not as bad as we think.
I have onc appointment tomorrow and got my list ready too - although scared about some of the ansas and what he might say.
Let us know how you get on though.
Just a quick update. Had my appointment with onc today who took over an hour with me for my consultation and was brilliant. Am def having chemo, rads, tamoxifen and don’t yet know results of her 2 so don’t know about herceptin but am being blasted with everything which leaves me although scared not as scared if they had said I was having nothing.
Got a copy of all the stats etc if I did or didn’t have treatments so feeling well informed. Also advised that start date is going to be 2 weeks today so can now plan again.
Thanks everyone for all the support and questions they really helped and made me feel prepared. Also felt that at least I went in knowing what I was talking about so could converse with more confidence that there wasn’t going to be anything to get past me.
Felt sorry for poor doc as he really did take his time and yet he in no way made me feel hurried I think I intimidated him more than he did me.
Going to make the most of these next 2 weeks re social life and just want to wish you good luck for tomorrow Lesley & Dawn.
Well done, it sounds if all went well for you today. You sounded very confident and ‘in control’!!
I hope all goes well for you with your forthcoming treatment.
Take care, and enjoy the next two weeks.
Hi Everyone especially Wendy
I had my appointment this morning and had a very nice doctor, it seems I have a largish lymph node in my chest (didn’t know there were any there) and they have booked me a PET scan and a bone scan fingers crossed they don’t find anything (if they do God knows what will happen). I have to look on the bright side but have had a few tears this afternoon!!! After these I will start chemo, so it looks like 2-4 weeks time. The lovely doctor signed me off of work as we have decided that I wont work while having the chemo (as this is my second time of having “C”) and my job can be very stressful.
I took a list fo questions and the doctor answered ally of them, I have also had a “Wig” consultantion booked (just in case) and tomorrow I am going to try and book the make up session as they are ment to be really good and you get loads of free samples (I will need all the freebies I can get as I think after next month I will just be on sickness benefit!!!)
Wendy: we may be on chemo about the same time!! lets hope it goes well
Thanks everyone for your support
Wendy - I’m so glad your consultation went well. I remember my first appt with the onc, like you I was in there for ages and he really took his time which we really appreciated. Don’t know about you but I felt much better about things after that initial consultation. I too am having the works (inc Herceptin, although this result took a while to come through), and am grateful they are throwing the lot at this little bu**er!!! I hope you are feeling reallly positive and keen to get going with your treatment now you know what the score is.
Defo make the most of these next couple of weeks. My boyfriend took me away for the weekend just before I started chemo, it was lovely. We stayed in a lovely guest house/hotel, went to an awesome chinese restaurant and drank pink champagne. It was just what we both needed I think and I’ll never forget it. I’m actually planning to book us into the same place for when I finish chemo next month. Its a surprise for my boyfriend who has been amazing throughout this whole experience. Bless! Anyway, have a great couple of weeks and I wish you well as you prepare to start chemo. Stock up on Lucozade and you won’t go far wrong!!!
Lesley - I hope your PET scan and bone scan go well and the results are good. You defo need to keep looking on the bright side until they tell you otherwise. I’ve certainly got my fingers and toes crossed for you. I’m glad you’ve been signed off work, I honestly did not fancy working through chemo so I am off too. Its been a godsend, as after a few sh*t days, once I start feeling ‘good’ again I’ll be bu**ered if I’m gonna spend those precious days at work!!! I hope your wig consultation goes well, let us know what you decide on!! I too am gonna book a ‘look good feel better session’ too, they sound awesome and I never say no to a freebie!!
Take care ladies and keep smiling,
Thanks for your lovely reply its great to be able to “talk” with other’s who have been in the same/similar position especially when you feel a little down. My boss rung me this morning and she is visiting me with HR on Wednesday, I will get the usual “don’t you look well etc” but what I really want to here is “the company will pay you in full whilst you are sick” i think pigs may fly before I get that but if they do it will be great PR as I will tell all my colleagues!!
The weekend away sounds good, my friends husband works for a hotel chain and has offered to try and get some discounts for me, the only this is my brother is over next week from America for 2 weeks so I may have to put that on hold unless my Chemo gets put back a couple of weeks.
Are you still having treatment?
The lucazade tip sounds good so I will get a supply in, not the same a rosa wine or pink champgne!!!
I am still having chemo at the mo, although I’m rapidly approaching the finishing line! I have just 2 more sessions of CMF to go, one on the 3rd Oct and the final one on the 10th (bloods permitting!). After that I will be having 15 rads, Tamoxifen for 5 years and Herceptin for 1 year. Phew!!!
So, I have a long way to go but finishing chemo next month will certainly be a MAJOR milestone. It would be awesome if you could get full-pay whilst you are off sick. I am very lucky as I am in the Armed Forces, so not only am I on full-pay but also they pay for my petrol on every hosp trip and even pay for my parking. I could not ask for more!!! They have been awesome with me and I know I am very priviliged. I hope all goes well when your boss comes over, I hate that ‘blimey, you look well’ comment that always comes whenever someone sees me. They don’t know the half of it!
Enjoy your weekend if you do get away and I hope you have a great time with your brother,
Take care and be sure to keep in touch,