Posting in case anyone has had similar as I’m having trouble getting my head round this!
I had my post op appointment yesterday, all OK with wounds etc and margins were clear. However 2 shocks, first, one of the 3 lymph nodes they took had cancer traces and secondly they found and removed a 10mm DCIS in what we thought was my healthy breast discovered during the planned mammoplasty reduction for symmetry.
The second apparently means I am eligible for gene testing which opens up a whole new world of stress and decisions to be made.
But its the news about the lymph node that is really worrying me. They will decide on Monday at the MDT meeting on treatment, surgeon yesterday spoke of radiotherapy and hormone treatment which was the plan anyway. But I guess they could also decide on a full lymph clearance.
If anyone has had similar results re the lymph nodes it would be really helpful to hear what was done.
Lisa
Just a heads up they may advise chemo …I had micro metastatic in one node technically clear but the advice was to have chemo . Had also had full node clearance previously which is no picnic but in time it gets better. You may not have to have either of course fingers crossed x
Hi
i too had one unexpected node involved and had previously had DCIS in other breast…my treatment plan changed immediately to chemo…not worth the risk my oncologist said…also had to have the 3 week chemo instead of 1 week… hope all goes well
Hi Lisa
The mention of infected lymph nodes seems to terrify most of us. But think about it - what are lymph nodes for? To halt the disease cells in their tracks. So your one lymph node has done exactly what’s expected of it and it’s unlikely any cancer cells have spread - you have plenty more lymph nodes still waiting. It’s when the proportion of infected to not-infected nodes gets big (I had 19/21 - chemo essential) that it’s riskier.
If you do have chemo, which is possible, it’s unpleasant but it’s manageable and it’s worth it if it means your cancer is cured. But it does sound as though your type of cancer and its stage won’t necessitate it. Straight to radiotherapy sounds a lot nicer. It’s awkward, some people get side effects (I found it a doddle after chemo wiped me out) but my oncologist said the evidence shows it is the most effective of all the treatments. So I hope that’s your treatment plan and you react well to the radiotherapy.
All the best xx
Hi @Lisa65
I’m so sorry to read this. I’m awaiting my results after an SMX for IDC and I’m not sure how I will respond if I get the same news as you. Be strong and keep fighting, easier to say than to do but these sites are so helpful to hear others stories, get tips and know you are not alone.
I’ve been scared by the number of people who have had treatment for DCIS on one breast only to find that a) it has spread (I was told it didn’t when I was diagnosed but it has) and b) that it’s present in the other breast but hasn’t made itself known. I’ve read of people opting for a DMX, even though cancer has only been spotted in one breast, I wasn’t given that option and even if I had I think my lack of knowledge would have caused me to say no. Now I feel like I have a ticking timebomb on my left side and wish it was gone!
Take care try to keep positive and let us know how you get on.
Sue xx
I also had 1 positive lymph node found out of 3 taken. I had dcis with micro invasion. My plan has now changed as also found to be her2 pos. waiting for ct then bone scan then oncologist review.
Its all been a shock! I also work out of this area of the hospital which is also adding to my stress. I am a private person and all my colleagues will see me going through treatment.
take care, be strong.
Hey Lisa,
Really sorry to hear your news. It’s a minefield isn’t it - you get through your surgery and then there’s another assault to tackle!
I’m already wondering if I should have asked for a bilateral mastectomy to include my apparently healthy (but packed with cysts/glandular tissue) breast, rather than losing and rebuilding just one.
It’s so hard to take in all the new information and to feel like we are making the ‘right’ decision…good luck with your meeting on Monday, hopefully you have time between now and then to prepare all the questions that you have so that things feel less uncertain. Good luck!
Dear Lisa
I hope you are doing OK. I had my invasive diagnosis on 15 June - 11mm tumour they thought. On 12 July I opted for full mastectomy which I was pleased about as they removed 40mm tumour and high grade DCIS, also 2 out of 4 lymph nodes were macromestates (not sure on spelling). So yesterday 17 Aug they went in for a full axillary lymph clearance. they have said the next step is chemo and radiation but not sure in which order so will here at the results meeting in 3 weeks. Also is any of the clearance nodes shows cancer cells they will recommend at CT and bone scan. I am hormone positive and HER2 negative, so that is a ‘good’ thing in my eyes. It is a long way from the initial diagnosis of small lumpectomy on 15 June. That is the thing with cancer, keeps us on our toes, and no two cases are the same.
I personally find knowing as much as I can all the different scenarios is a great help and my docs and nurses have been very good at humouring me with this and telling me everything I want to know. I hope you are finding your way along this road, and remember we are all here for you.
Stay strong, we are all here for you.