Help and advice please regarding “next steps”

Hello Jules,  Sorry that you are on the breast cancer journey as it can be one with speed bumps along the way.  I sent you a link about lymph nodes and it will help you as you may have quite a few questions after reading.  Did they do any genomic testing like oncotype dx?

can I ask why you didn’t have lumpectomy followed by radiation?  I am assuming that your breast was possibly too small to have that amount of tissue removed and make it look good.  I had lumpectomy in both breasts but I am small breasted and it would have been impossible for me to have had lumpectomy with 4cm tumor.  
Sorry I don’t have any answers for you.  
Hugs to you

Barbara

Here is the link https://www.cancer.org/cancer/breast-cancer/treatment/surgery-for-breast-cancer/lymph-node-surgery-for-breast-cancer.html#:~:text=Axillary%20lymph%20node%20dissection%20(ALND),-In%20this%20procedure&text=ALND%20may%20be%20needed%3A,core%20needle%20biopsy%20shows%20cancer

I had written you below but forgot this link.  
Barbara

Hi Barb, 

thanks for the link. The only testing I had on the nodes was during surgery and I’m not sure what type it was, only that the results were 1 of the 4 shown positive. My planned surgery for total  clearance of the nodes is on the 5th APR , then I’ll have to wait a further 4 weeks for those results. I am on the larger size breast wise and given the tumour and that the DCIS was widespread I opted for mastectomy without reconstruction. Thanks for your help Barb and sending a hug right back x

Hello Jules,  the genomic test would have been done in the  breast tissue if it was done.  One question I would ask is why the recommendation for ANC if only 1 of 4 nodes had cancer?  
I understand about the mastectomy since DCIS was widespread.  Sounds like you had invasive breast cancer too.  
Take care and I know this is a stressful time as so many questions arise.  
If you get a chance you can read my profile as I certainly was very nervous about everything.  
Barbara

Oh how stressful for you. I can only share my own experience - I don’t know what is considered normal.  I had all my lymph nodes removed at the time of my mastectomy as they knew at least one was cancerous as they could feel it and it was confirmed by a needle biopsy.  21 were cancerous - I think the number of them that are cancerous gives the indication of how long it’s been there rather than anything in the results.  My tumour was lobular and 20cm.  In fact all the results were a bit of a shock…. I had all the scans before surgery and they were clear and then had chemo, radio and now I’m on Letrozole and Abemaciclib - i was told they wouldn’t do more scans unless new symptoms came up as they are treating me adjuvantly - ie the tumour is out and everything else is to avoid recurrence.  If you didn’t have a full set of scans before surgery maybe you can ask if they will do them now to help determine next steps.  I was a bit upset that there weren’t more scans afterwards beyond annual mammogram/CT of breast.  I hope you can ask the questions you need and get the answers soon.  Take care and all the best in this horrible journey… in terms of it being hormonal that can be treated.  I had the option of having my ovaries out but it wasn’t simple as one has adhered to my womb so I have monthly zoladex implants to keep my ovaries shut down as I am premenopausal and the hormone treatment I need (Letrozole) is for post menopause only - so try not to worry about that aspect - they will make suggestions based on all the factors but it’s not necessarily the case that you’ll need your ovaries out. 

Sorry this is a late reply, I have been stressing out about next weeks op and in doing so, decided not to look at anything, Ostrich head int the sand, comes to mind!! Thanks so much for taking time to answer, It’s really helped me a lot. I feel like scans done prior will now not be an option given my surgery is only days away, if they had already established you had cancer in your nodes prior to surgery, I would have thought you would have been someone who did have the scans, so they can compare after the chemo etc, so I am not sure what criteria does automatically receive both scan prior to and after? 
I don’t know, one day you are just going through life daily delights and this we are hit with this and your world is turned upside down. All the very best for you, let’s all fight this together! 
xx

I will, lots of love xx

This is a difficult and at times frustrating journey. I’m in a quite similar position as you, my timeline was

Initial scan in December suggested lymph nodes clear, and I opted for a therapeutic mammoplasty, with sentinel node biopsy, which I had in mid January. I was also stunned to be told that cancer was found in 2 of 4 lymph nodes. Sent for a CT scan which fortunately showed no sign of spread. Booked in for an axillary clearance (done at the start of this month). Much better news this time as 10 further nodes found, none of which had any cancer (I’d been prepared for the worst, and was as stunned by this as I was previously!). As that gave 2/14 with cancer it was sent for Oncotype testing, and I was started on Letrozole.  I’m now waiting for the results to come back from USA. 

I find the waiting to be the hardest part. 

Good luck with your operation, I didn’t find it too bad but the drain was in for 5 days which was a nuisance. 

Pathology cannot tell how long it has been there, only that it is there (or not there) now. There is no correlation between how long it has been there and whether or not it has spread further. 

Where I am they do not offer scans post-treatment to verify no spread, but I did have a full body scan at some point after treatment when certain symptoms made my oncologist suspicious. Other hospitals may do things differently, it's worth asking.

ok thanks for that, any bit of information helps doesn't it, as you think of different thinks at different times in the process dont you. xx