What questions to ask at first consultation

Hello, I was diagnosed last week with breast cancer and feel like a deer in the headlights. I have my first consultation tomorrow and, I anticipate, a fuller diagnosis. I realise that a lot will depend on that diagnosis but is there a list of questions that some of you found helpful. I’m worried I’ll come away thinking I should have asked this and that. I know I have two lumps, grade three. They think they’ve caught it early but may confirm tomorrow and they will confirm if her2 +/-. Trying to manifest some positivity!

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So sorry you have to go through this. First thing is bring someone with you. Apparently you only hear 20% of what’s said and I found it very helpful and reassuring to have that other person there who picked up things in a different way to me.

Secondly write your questions down and don’t be afraid to get clarity if you don’t understand something. Also write your answers down too.

I would ask for as much detail as you can get re the biopsy or what details they know now so that you have this which will be helpful to understand later and good to find others on forums like these.

Find out the plan and very importantly the timelines. They may not know everything yet so ask if there are other scans you need.

Determine how aggressive their approach is and why they have recommended this route. Who will be your medical team and how can you engage with them if you have further questions that you have not thought about here.

In my case I went from a routine scan to a diagnosis of DCIS to a mastectomy. I had researched as much as I could beforehand so it was less of a shock to me on the day. However everyone is different, some people like me want to know every little detail and others don’t. So understand what will give you the best comfort at this time.

It’s all very shocking but this is a key time to get comfort in terms of the action plan for you. Hopefully it will go well. The very best of luck and remember that you will feel better knowing the plan. The waiting is the worst.

Take care of yourself. X

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Thanks so much for the info.
Sorry to hear about your diagnosis. I hope treatment is going as well as it can.
I know I’ve to get a mastectomy, not sure about reconstruction yet, apparently mine isn’t hormone fed/related.
I’m like you and want to know every detail. I’ve been researching as much as possible, lots of terms I’m not familiar with but googling like mad.
I’ll have my husband with but he’s pretty agitated about the whole thing, so we’ll see how that goes.
Thanks for the guidance and best wishes to you xx

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Hi again,

Make sure you only look at reputable sources as there’s a lot of misinformation. Places like Mayo clinic, Breastcancer.org are good and this forum. Personally I found the mastectomy and reconstruction very straightforward and was back in work six weeks later. I was pleasantly surprised how good the reconstruction was and how seamless it was.

At the time I didn’t have to do chemo but two years later am back with a recurrence (unlucky as I had a 1% chance) and going through chemo and radio therapy now. If they recommend chemo try and determine what kind and why as there is a vast difference in how harsh the chemo is.

It’s harder I think to be the person without the information but they are always good to at listening and taking everything in.

And try and push them for timelines as the sooner you get started the better and I found some of the waiting in between could have been shorter and overly long.

Good luck!

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Hi @songbird1

Welcome to the forum but so sorry to hear about your diagnosis.

This article is on the BCN website

https://breastcancernow.org/about-breast-cancer/diagnosis/questions-to-ask-about-your-breast-cancer/

As you are new here I will add these links that may be helpful to you in the future.

  • Website: You can register for our services. Or find our publications, more information and support or how to volunteer. It’s all here.
  • Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
  • Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
  • Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
  • Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
  • Moving Forward: Finishing treatment can be hard, and it can be difficult to move forward with your life. You can access our support online or face-to-face. Our online information hub and Moving Forward journal provide extra ideas and information. Courses run over 2 weeks, with 2 3.5hr sessions. Or trained facilitators and volunteers are there to help. Find a course near you.
  • Publications: Download and order publications. You can read online or order your copy for free. From managing menopausal symptoms, hormone treatment or triple negative breast cancer, our information is here for you.
  • BECCA: Our free app is your pocket companion to primary breast cancer.
  • Speaker Live: sessions are on every month. They focus on the topics that matter to you, lead by expert speakers from across the UK. You can register for one of our webinars, and watch it live, or as a recording. We also have Facebook and Instagram Live sessions run by our clinical team on a huge range of topics. You can find them all on YouTube
  • Secondary breast cancer is full of uncertainties. But you can count onLiving with Secondary Breast Cancer to be there for you, no matter what. You’ll be able to talk, listen and learn with people who understand the challenges that secondary breast cancer brings. Our groups are open to people with a secondary diagnosis. Monthly sessions, facilitated by a therapist, are held in a variety of locations across the UK and online. Find a group. And if you are 45 or under? Our Younger Women with Secondaries Together events provide information and support
  • LiveChat: Open to people with a secondary diagnosis. A private chat room where you can talk to others in a similar situation.
  • Access Fund – all our events are free, but if you need help getting there or accessing our services, let us know. Email us at accessfund@breastcancernow.org or call 0345 077 1893.

Depending on your diagnosis there are also monthly chemo and radiotherapy starters groups which are brilliant support for people going through the same/similar to you.

As far as questions, you’ve mentioned you think you are having a mastectomy, make sure you find out their reasoning behind that. I remember my surgeon saying they do lumpectomy/wide local excision as much as possible to retain your natural breasts.

How big is the tumour? Has it spread to lymph nodes? I’m HER2+, it did take longer to get those results, so don’t worry if they don’t know. The treatment for HER2+ saves lives. Some have Herceptin alone others have Phesgo (Herceptin and Perjeta). Is it hormone positive? If triple negative what chemotherapy?

Always ask why? Get them to justify why the plan has been decided. This is for your own mind. A multi disciplinary team will have reviewed your case so a breadth of knowledge will have gone into your plan.

What is my Predict score? What is oncotype? ( if not HER2+)

How long will surgery take? How long to recover? What can I do and cannot do in recovery?

Can I have a contact number if I have any further questions? Most teams have a breast care nurse, leave a message and they will call you back. Mine has been fantastic.

Sorry to go on but I wanted to give you as much as possible. I may even think of more!

Thinking of you. :smiling_face_with_three_hearts:

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Hi, thank you so much for the links and info. I will read through and get prepped, for tomorrow’s meeting xx

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Gosh, while your mastectomy sounds straight forward, I had anticipated being back at work intermittently between treatment. I think I was being naive.
I’ll read up some more and get my questions ready!
Thanks for the pointers xx

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Hi there,

My only advice to you would be go with someone to the consultation and ensure they know what your questions are. You probably won’t remember much of anything that was said by the time you get back to the car! You probably feel numb.

My consultant stopped talking to me when she realised I couldn’t listen and addressed everything else to my husband who was in the room with me.

Good luck. They will take good care of you. You’ve got this.

x

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Thanks for the advice.
I took my husband and between us we took notes and managed to get the info needed for now. I asked all my questions, you are right some I just couldn’t take in but the nurse I spoke to was absolutely brilliant and such relief just having a plan in place. XX

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