What should I ask?

Ask our Nurses your questions
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Hello there, I’m reposting my introductory msg below. I’ve had three appointments with my surgeon so far. Each appointment has brought very difficult news. Due to my level of fear and shock, I don’t feel that I’ve asked many questions and I’m now booked for surgery on 16th April. I was wondering if you could suggest questions that I can ask, prior to surgery please? Many thanks, S

Hello all, I’ve just signed up here today and thought I’d jump in.

I received my diagnosis on 15th Feb, following a routine mammogram on 24th Jan. Although, I have support, so far I’m finding this a lonely and scary road. So, I’m just sharing my story so far…

I feel like like I’ve been on a terrifying roller coaster, ever since I received the call-back letter after my mammogram.

First the scan and biopsy, where I was told that the lump was small 1.5cm and if cancerous had been caught early.

Then, the first appointment with the hospital surgeon. Where the cancer diagnosis was confirmed and a provisional lumpectomy surgery date was offered.

Following the MDT, an MRI was ordered.

The MRI revealed that the lump was larger than first thought and also that the area affected is much greater as there are wider spread pre-cancerous cells.

A lumpectomy is no longer possible and I’ll need a mastectomy on the left side.

The MRI also found an area of concern in my right breast. After more biopsies and scans, this was found to be invasive lobular cancer. The left breast is invasive ductal.

I am now sceduled to have surgery on 16th April. 2mths after diagnosis. It’ll be a mastectomy on the left side and lumpectomy on the right. With sentinel node removal on both sides.

I have also been offered genetic testing, due to having bilateral breast cancer. If that is positive, then a right side mastectomy is recommended.

It is a lot to take in.

I started the year as a healthy 58yr old woman (I thought) excited about life and the future. This is where I now find myself.

I know this is a long post. I just needed to share. I thank you, if you got to the end. Even if you didn’t, I still thank you all for being here.

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Hi there. Sorry you find yourself here. I was diagnosed in December. Its April and I’m 2 surgeries in but no treatment plan in place to follow it yet. Unfortunately, theres a lot of waiting. And for me and many others, the waiting is the hardest part. Before your surgergy, the surgeon or assistant will probably come and check in with you and you can ask questions. After surgery the breast care nurses will come and see you or maybe the surgeon too. Are you having a sentinel node biopsy too? Not sure what you should ask but I just wanted to say, that I’ve had 2 surgeries in 8 weeks and they were not as scary as I’d imagined. They were my first ever operations and I was very nervous. You will be well looked after. Good luck x

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Hi there - I’m no expert in any of this and like you I started 2024 as a positive healthy 57 year old with no clue what was to come.
I’m one surgery in now and awaiting radiotherapy but wound not playing ball.
The outpatient environment can be very over whelming and it is difficult to concisely phrase questions that can be answered in a timely way. But you have to take your opportunities as they arise and I haven’t found my breast care nurses very forth coming when it comes to facts and detail.
I think we all do our own reading and considering the information we can find out there, without terrifying ourselves, but I do a mini consultation with myself before my medical meetings and write down all the issues that pop in to my head. After a bit of paraphrasing I usually manage to identify what questions are important and Need addressing.
You have a lot to consider and it’s important that you use your consultations to the max. Don’t worry about being in that room ‘longer’ than your appointment - part of this process is to be sure, when you look back, that you understood and did everything as well as you could as this will support you moving forward.
Good luck!

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Hi Bluesatsuma

Thank you for your reassurance around your surgery experience.
It’s good to hear that your surgeries were not as terrifying as you expected.

I too find the waiting and the uncertainty so distressing. Even though I now have a surgery date, I know it’s just the beginning and that more waiting and uncertainty lies ahead.

I hope that you have your next steps confirmed soon. I send you healing thoughts.

All my best, S

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Hi Helen3

Thank you for taking the time to read and respond to my post.

I really appreciate you sharing your approach to your appointments. I like your idea of a mini-cosultation with oneself. I’m going to try that.

I have found my outpatients appointments extremely stressful; especially as each time I’ve had one, there’s been more bad news. Which has then scattered my thoughts and feelings again.

I have my pre-assessment on Monday. Over the weekend I’ll prepare some questions to ask my nurse, either in person, or on the phone next week.

Thank you once again. Sending healing vibrations your way.

All my best, S

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Please don’t leave burning questions until your surgery day. That’s ok for last minute concerns but you need time to process others. As Helen3 said it is important to be comfortable with what’s happening as it will help in the future.

I also had bad news at each appointment and was too shocked to take in and ask questions. Once over the shock I phoned the helpline on here not knowing what I wanted from them. They listened to my story, asked questions and guided me to what I wanted from my team. I also spoke to someone at my nearest Maggies who helped more with the emotional side.

With this I contacted my nurse who was able to answer some and she then arranged another appointment with my surgeon.

I’ve now had 2 surgeries and am having a mastectomy on 15th April. I am confident that I am doing what is right for me at this time. We are all different in the amount of detail we want but we need to do what is right for us to help with our continuing journey.

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Thanks Holly, this is really helpful.

I have had questions at each appt. but after being hit with more news, it’s made some of them redundant. I now find that I don’t even know what I want/need to know. Very strange for me, as I’ve always been a master of my own destiny kind of woman!

I will definitely speak to the nurse team on here to get some support with direction. I had thought that this thread was answered by nurses but I probably misinterpreted.

Thanks so much for your support.

Wishing you all the best with your surgery on the 15th.

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Hi shaka

Thanks for posting on our forum

We hope to be able to respond to you tomorrow.

In the meantime our helpline is open from 9am tomorrow.

If you do phone our helpline please let us know that you have asked a question on our forum so that we know your query has been answered. Thank you

With best wishes.

Lisa

Ask Our Nurses service co-ordinator

Please read the Ask Our Nurses disclaimer Full details on how we collect and use your data can be found in our Privacy Policy

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Thank you for your reply Lisa.

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Hi Shaka

Thanks for your post. It does sound as though you have had a lot of information to take in.

It is normal to have questions that you may want to ask your doctor or breast care nurse. This can help you to better understand your diagnosis and prepare for the treatment that is recommended. As @helen3 suggested, you could write down concerns you have and then discuss them with your treatment team when you do meet with them. You can always call our helpline , as @holly.52 mentions she has done when given information that you may need to the process.

Having been told you require a mastectomy with the possibility of bilateral mastectomy based on the outcome of your genetic test results can be terrifying, as you said. Whatever the results of your test, it’s important that you can talk through any questions or concerns about your results with your genetics team. With the information, your breast team will explain why they think a particular operation is best for you.

There’s no right or wrong way to feel after a diagnosis of breast cancer. You’ll probably go through many emotions. Do talk through your concerns with your breast care nurse or GP. They may be able to refer you for some talking therapies to help you through this difficult time.

You might find the range of free supportive services we offer for anyone who has had a diagnosis of breast cancer of interest. They include face to face and online courses and events allowing you to speak to people going through a similar experience.

For more details about these services, please see the information on the link.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).

If you would prefer one of our nurses to call you. To do this, please complete this form ticking the box agreeing to a call back.

Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.

Out of hours you can leave a message and we will call you back when we next open.

Best wishes

Sonia

Breast Care Nurse

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As we are unable to monitor for further replies, this thread will now be closed. If you have any additional questions or would like to provide feedback, please start a new thread, call our helpline, email us or request a call back.

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I tend to remove this bit as it’s repetition.