Just diagnosed

The uncertainty can be soul destroying, and especially when you don't yet have all the details and the full diagnosis. I hope you get all the details very soon, so at least you know exactly what you are dealing with. I think nearly everyone here has been through this to some degree or another, so nearly everyone here who reads your post will nod and think, "yeah, I know what she's talking about."

We each have our own ways of coping and they are not all the same. Mine was probably not very common: once they told me the day and time of my next appointment, where I was going to be told everything, I calculated how many days, hours, minutes and seconds that was. It helped a little that I could see the time going down. I also put together a list of questions for the oncologist, covering all the possibilities I could think of without trying to cross too many bridges ahead of time. These were along the lines of "What are my treatment options?" "By when do I need to make a decision?" "How long is treatment expected to last?" "what are the side effects and risks?"

I was diagnosed during covid and before they started vaccinating, so I had to go alone. I did however have my partner on the phone with me, so he was able to hear everything in real time, ask questions and offer input. We have been doing this for every appointment ever since, and on one occasion when he could not be there on the phone I asked and received permission to record the talk with the oncologist.

Taking notes helped too, as it allowed me to go over everything again later on, as needed.

Thank you so much for your reply. I feel talking about it will really help me. I am trying to busy myself with the children and make things normal for them. 
The waiting is just the worst feeling, I feel like I am achey, been sick and can’t sleep. 
Is this a normal reaction? 
Many thanks,

F

Completely normal, and it's good that you are trying to focus on other things such as everyday life. For me, getting more information helped, but if you do that, make sure you go only to reliable sources and note the dates of the publications. (I once stumbled on a research paper that made me sit up, then noticed it was 14 years old, so checked and found out it was a little out of date.) The publication here on the Macmillan site are used by my oncology team. But that's for later, when you have all the diagnostic information.

Do you have a date for your next appointment?

Hi F 

Sorry to hear about your diagnosis.

I was diagnosed in October with a large tumour and one positive lymph node.I had a mastectomy and lymph node removed.

My Oncologist said I am probably cured of cancer,Follow up treatments are to prevent reoccurrence, to mop up any stray cancer cells.

I am sure they wouldn't say yours is curable if they didn't think so.

I was also called back a week early for the biopsy results , just as well as I was climbing the walls , thinking the worst.Hopefully you might get called back early too.

Hang in there , once you know what you are dealing with it will seem a bit more manageable.

Sending hugs xx

Thank you, I am seeing an oncologist Tuesday just to get ball rolling and meeting the consultant again Friday as they should then have results from my biopsy.

Just petrified that because it’s in 2 nodes they will tell me it’s incurable and has spread. 
F

Thank you so much for replying, it positive to hear you had it in lymph node and they feel they have cured you. What a relief, I am so hoping they can tell me the same. 
It’s just all been such a shock after being initially reassured nothing was wrong. 

F

xx

They will not say that unless they see something on an MRI or a CT scan that looks like a spread. If your scans so far have been clear, they will stage and approach it as something to cure rather than something to manage. However, you do need to hear it directly from the doctors, of course. I am glad your appointments are this coming week and I hope you will want to tell us how it all goes. 

thank you, the consultant was fantastic. I will of course keep you updated. You don’t know how lovely it has been to be able to talk to people who have experienced this x 

Excellent about the consultant. Mine is really good too, but I have been through consultants who weren't, so I know the different impacts. As for talking to those who have been through the experience, yeah, I know what you mean.

Hi 

After my initial biopsy I was told it was in one lymph node. After surgery it was confirmed in 3 of 2 nodes.  I’m now having radiotherapy and hormone treatment as the  cancer was sent for Oncotype tests. This has shown it is a low risk of spreading and reoccurring. 
Everyone’s treatment and diagnosis are unique, you team will tailor the treatment you.

Rx