Was my mastectomy a mistake!!!

* I meant 2 nodes positive out of 25 removed 

Hi,

I don't know if the OncoType DX test has been put on hold due to COVID, mine was done almost 20 months ago.  I know I've read in last few weeks some ladies on here waiting for results of Onco Test though.  It was my Surgeon who agreed to me having the test. 

Do you know the size of the cancer in your nodes? 

xx

They didn’t tell me the size in nodes (although they already knew one would be positive as it was picked up at core biopsy and MRI prior to surgery - hence why they proceeded straight to full clearance at same time as mastectomy).  surgery then confirmed 2/12 positive nodes at levels 1 and 2 and 0/9 positive at level 3 i.e the 2 positive ones out of the 25 were at the lower levels. Xx

Hi,

If you would like to know about cancer size in the nodes you could always ask at your next appointment. I've just noticed a lady has this week had OncoType DX sent off, so its still being done!

Theirs so much to think about at the early stages of diagnosis, I found it so scary and I really didn't cope at all well, I coped with the surgery but I was so frightened that they would get my treatment wrong ie I would be undertreated, still worries me now.  

Take care. xx

Crashing the convo a bit sorry. . . . While I fall into the criteria for onco type test. . . At first I was told due to the virus I wasn't getting it. . . And my Ben from chemo was 5%nd wasn't getting that either. . . . .Howeever that hit me so hard and I couldn't accept it so after asking they agreed to do it still although told me they didn't think it would alter anything. . . . I got results on Thursday and it was 24! So has come back much higher than they thought. . . Oncologist calling me after weekend. It was my surgeon who I have been dealing with right now who I said I couldn't. , but then agreed to the test so do chase it if you think you should be having it. X

Really should learn to check before entering comments sorry for typos aha! Hope you get the gist of what I was saying though. X

I was of the opinion based on conversation with my breast nurse that if the lymph nodes had cancer then it would definately be chemo plus.

They took the main sentinel node plus 3 others and they were clear so I was given radiotherapy. My curious oncologist sent off for a Oncotype dx test and to everyones astonishment it came back 3 days ago recommending chemo. The chance of recurrence without chemo was too risky so I am not looking forward to that on 27th. I undergo 3 surgeries just to avoid mastectomy as DCIS were spreading.  That and chemo were my biggest fear, now I have to face one.

I was desperate not to have chemotherapy due to possible side effects and witnessing a friend undergoing it 25 years ago. 

My oncologist said from the start he recommended chemotherapy but agreed to wait while I had Oncotype test (self funded)  Result came back that risk of recurrence was too high without chemo. 

I had my first cycle on 9 April and had miserable sisnusitis type headaches, tiredness and indigestion for the first 4/5 days.  Since then have felt like my normal self.

Next cycle is 30 April so it seems I will have 2 weeks between cycles of being fine.

I know everyones experience is different and believe me I was absolutely terrified of chemo but can honestly say the fear was worse than the few days of  feeling so uncomfortable.

My love of life is too great to sacrifice it for a relatively short period of time having treatment.

Also with the coronovirus crisis, what would any of us be doing this summer?

I am looking at it positively and thinking that at least it is only 1 summer spoiled by treatment and coronavirus.

This is my first post for many weeks while absorbing what was happening to me but I have found great comfort in reading others experiences.

So, I wish you well and a good outcome.

Thanks. Glad you are finding chemo bearable. I like your positiviness about it, small price to pay for a less risky life.  True, there is not much to miss outside this summer at all.  Thanks for your encouraging words.

All the best with your treatment also.

Had a call from my BCN this morning. My surgeon has now agreed to send off for OncoType testing despite being node positive (2 out of 25). It turns out guidance has changed due to COVID allowing testing of node positive (up to 3) patients on NHS - previously only would have been eligible for testing on NHS If node negative. I’m really pleased about this as it will inform my choice re: chemotherapy much more now, particularly as I am so anxious about it with my husband working on the “frontline” at the hospital. They would have been recommending chemo/rads and tamoxifen for me previously and this may still be the case but at least with the extra test I’ll know for sure whether chemotherapy is thought to be definitely necessary xx