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2nd appointment- what to expect?

8 REPLIES 8
Evie-S
Member

Re: 2nd appointment- what to expect?

@Slightly Lopsided - I just wanted to jump on here to say what a wonderful reply you wrote. I hope you don’t mind but I copied the link to send to another member on another thread. Your first para made so much sense to me - I always found that I had to scribble down every word of an appointment otherwise I would have forgotten the answer/information by the time I walked out of the room. All the other information was really helpful and reassuring to anyone about to start treatment (I was diagnosed about 5 years ago). Best wishes, Evie xx

Felixfelicis
Member

Re: 2nd appointment- what to expect?

Thanks @Rudy1 

Yes, I never thought I’d have a need to be on a breast cancer forum. I doubt any of us did. It’s a great community though. Thanks for the info on what to expect and I hope everything works out ok for you going forward. 😊

Felixfelicis
Member

Re: 2nd appointment- what to expect?

Hello @Slightly Lopsided Thank you much for taking the time to give such a detailed reply, I really appreciate the information and will definitely get a copy of that book. There’s so much info available that it’s hard to identify the good sources from the not so good ones. 
My mum is coming to the appointment with me on Thursday and although I know that she will be as stressed as I am, it’ll still be good to have her there. 
In the meantime, I’ll try to keep busy as you suggest and not panic too much. I’ll post an update after my appointment to let you know how it went.

Thanks again. 🙂

Slightly Lopsided
Member

Re: 2nd appointment- what to expect?

Hello @Felixfelicis 

 

I'm really sorry to hear you have become a member of The Club Nobody Ever Expects to Join .

 

I don't know what the current rules and guidance are around taking someone with you to your appointment but if possible, I would strongly advise taking a good friend/relative/partner with you to the appointment to take notes.I was diagnosed just over two years' ago and was extremely grateful to friends who came with me to appointments and sat and listened to the consultation and wrote it all down , leaving me free to listen and then ask questions.(As Covid progressed,I had to go on my own and that was much harder, however patient my oncologist was when I sat with a list of highlighted questions, as I discovered how hard it is to listen/ask questions/write down answers, all at the same time!) I quickly learned we don't remember everything we're told -I think I read somewhere that studies show we immediately  forget almost half of what we're told in a medical appointment -and it really helped to be able to go over everything afterwards and find that my friends had picked up on something I hadn't and vice versa. It was also very useful to have a copy of  the notes I could send to friends as you will find yourself explaining your diagnosis and proposed treatment again and again when you really don't have the energy for it.  If you can't take anyone, it's worth checking beforehand to see if you are allowed to record the meeting-some hospitals may allow it.

 

Hopefully, you should also either meet or be given the contact detail of your specialist breast care nurse. Use them!They are very used to being asked lots of questions, and although I never actually met mine face-to-face, I found her great whenever I asked her anything .Her response was always "try me" and I knew she sat in on all the multi disciplinary meetings where my treatment plan had been discussed so she knew why something had been decided and was able to explain it .I am someone who generally prefers to absorb information, have time to think it over  and  analyse it and then  ask questions and it helped to know I could phone her after consultations when more questions had occurred to me .

 

Please also be prepared for the fact that treatment  plans may change depending on the results of biopsies, surgery etc and what you might be told at the beginning may not be what actually happens .To give you an example, I was told after the first biopsy that my cancer was Grade 1, yet after surgery it was upgraded to Grade 2-which was not too major a change but  it did involve a few tweaks to my treatment and some considerable anxiety until I discussed it with my BCN-I remember she actually said she wished patients were told to expect the unexpected at the beginning as results can change the overall plan.

As a fellow control freak, I can quite understand your concerns!I think I quickly had to learn this was one thing I had no control over and I was very fortunate I had faith in my team and had to accept they were the experts-which is not to say I didn't interrogate them! I  could  still control my life at a micro level at home and, to an extent ,at work, so my way of preparing for treatment was to cook frantically and fill the freezer , make lots of lists and keep busy-but it went against the grain. And be prepared for the fact your life is no longer your own-your diary will be filled with hospital appointments!-and each post seems to bring more dates. I also found it helpful to take each part of my treatment a stage at a time, and not look too far ahead-not easy for someone who generally had all her holiday dates organised a year ahead (This was pre Covid!)

 

There is a very good book which was recommended on this forum written by a GP and consultant breast cancer surgeon who have both had breast cancer, "The Complete Guide to Breast Cancer-How to Feel Empowered and Take Control"  by Trisha Greenhalgh and Liz O'Riordan and I really wish I had read it before I started treatment.It is written very logically and sensibly with lots of good information-the edition I have is dated 2018, so one or two treatments may have changed a little but it's a very clear guide.

DON'T READ DR GOOGLE! And there are lots of lovely  ladies here who will help you too.

 

Lots of luck for your appointment and for what is to come 🤗  

Rudy1
Member

Re: 2nd appointment- what to expect?

So sorry that you have also found yourself here!

I’m only 2 and 1/2 weeks past getting a biopsy and scans so I am in no way pretending to be an expert or too knowledgeable but what I will say is use this site for info and contacting nurses for advice, Google will only tell you worst case scenario and mixed info. 

In my experience my appointment a week after the biopsy was results and limited info as still waiting for full results. Remember, you haven’t had your results yet so try not to get too obsessed with all the many many possible things it could be, but when you have your appointment there will be a team of nurses you can ask to speak to for more info. 

Try not to worry (easier said than done I know!) as you haven’t had your results and don’t know what’s going on. But speak to the nurses if you have any questions and get them to note down any important info for you if you are feeling overwhelmed (dates of follow up appointments/details of results). 

In my experience all info is drip fed not to overwhelm. You don’t need to go prepared for your appointment, you will have other appointments if needed to ask questions and have numbers to call if wanted to discuss. 

hope everything goes well with your appointment xx

Jill1998
Community Champion

Re: 2nd appointment- what to expect?

Step away from “ Dr Google “ !!! It’s really not helpful - if you look you can always find the worst case scenario there and drive yourself insane ! Only a doctor with the benefit of mammogram , biopsy and scans and discussion with team of people can make decisions about what happens next . 
some treatment plans do involve chemotherapy before surgery this may be because of the size or position of the tumour and ultimately can mean less radical survey . Try to keep busy if you can until your appointment , once you know the facts and your treatment plan you will feel better - the horrible anxious waiting is the worst part .

 

Felixfelicis
Member

Re: 2nd appointment- what to expect?

Hi Jill, 

Thanks for your reply. It certainly is a roller coaster ride! I felt a bit calmer earlier on but I’ve wound myself up into a frenzy again. On Wednesday the doctor said I’d likely be offered treatment rather than surgery and I foolishly looked up what that might mean hoping it would be less serious. Let’s just say I didn’t get the answer I hoped for. The sensible bit of me knows that she didn’t have the biopsy or CT scan results at that point so don’t have a full picture but I’m so panicked by it all.

Jill1998
Community Champion

Re: 2nd appointment- what to expect?

Hi , welcome to the forum . It’s very hard to get your head around things at the beginning of this horrible rollercoaster ride ! Until you are told for sure you have cancer there is always a chance that your biopsies could be negative and another explanation be given . If not you are likely to be told the approximate size of your cancer , it’s hormone status which helps inform the type of treatments that may be helpful to you and also whether there are suspicions the cancer has spread to your lymph nodes . At the beginning it is like fitting the pieces of a jigsaw together as there may be further tests needed to get a full picture and some results are not available until after you have surgery to remove the breast tumour and / or lymph node biopsy . It’s like learning a new language in the beginning !!  Lots of us here who’ve been there / are going through it . Please post questions / ask for support whenever you need to - always someone around to talk x 

Felixfelicis
Member

2nd appointment- what to expect?

Hi all, I’m just starting out on this terrifying journey. 
I had a hospital appointment on Wednesday when they did a mammogram, ultrasound, X-ray, 2 biopsies and a skin punch biopsy and a CT scan. It was the longest day of my life! Then the doctor told me the images were suspicious of breast cancer. 
I have my next appointment in 5 days time once the doctors have analysed everything and know what treatment is best for me. To say I’m absolutely terrified is putting it mildly.

Can anyone tell me what to expect at this appointment please and what sort of questions I should be asking them? I’m a control freak and right now I’m just being swept along which is adding to my anxiety. If I know what to expect and can prepare and plan for it I think I’d feel a bit better.

Thanks x