Extracapsular spread

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Hi.has anyone had been told of extracapsular spread and what it exactly means.  All my breast nurse says it's treatable.  Although I've had a second mastectomy 4 weeks ago, has it spread anywhere else? 

  • Hi Lostagain, I had extracapsular spread in my two affected lymph nodes, a grade 3 breast cancer with lymphovascular invasion. I had lumpectomy and lymph node clearance February 2023. I just think if the cancer is in the lymph node it’s at risk of spreading no matter if there is extra capsular spread or not but the treatment I am now having is to reduce this risk. I am having extensive adjuvant treatment which have included 6 rounds of chemotherapy, I’ve had 3 of 6 iv bisophosphates, I’m on letrozole for 10 years and I am on my Abemaciclib for 2 years. 
    I am not going to say this journey has been easy but I have found getting my head around my breast cancer diagnosis has been the hardest part. I am fortunate that so far I have managed all the treatment, obviously I have had and I’m having some side effects but I’m living a full life. 
    I have read on this and breast cancer now forums of women who have had no lymph node involvement with lower grade breast cancer and have still had metastasis early and other women who have had high risk cancers who have no evidence of disease 15 years later. I have excepted all treatments offered but none of us know the future, I hope to be around for several more years but it has taking me 18months to reach this state of mind. I too was freaked out during the early months of my treatment but the treatments we are offered are individual to our particular cancers and I have put my trust in the surgical and oncologist who have looked after me. I wish you well with the rest of your treatments. 

  • Thank you for replying. I had a mastectomy 18 years ago and all was well. Until now with them finding 6 different types of cancer from grade 3 to grade 1.   I'm due to have chemotherapy , followed by radiotherapy and I think 3 lots of medication but I'm waiting to see the oncologist.  I'm still struggling as the letter sent, said 8 lymph nodes out of 16 were metastatic and said extracapsular spread. None of this was explained to me at the time. 

  • Hi Lostagain, the 3 types of medication may be a amatroze inhibitor, bisophosphates and Abemaciclib which I am taking. I also had radiotherapy I just forgot to mention it earlier. The Abemaciclib is a new drug which is offered to high risk early breast cancers and there are threads on here and breast cancer now about it. If you are offered this drug don’t be freaked out by the list of potential side effects as those of us who are managing well on this medication don’t tend to post. The waiting to see the oncologist and receiving your treatment plan I found was really hard. I hope your appointment is soon. 

  • Hi,

    I also had extracapsular spread. This meant that the mastectomy and radiotherapy plan changed to mastectomy, nodal clearance, chemo, radiotherapy,  abemaciclib, letrozole and zoledronic acid. I've just started the abemaciclib and letrozole, and have my first infusion next week. I've had a full body scan and it was clear - no spread outside of breast and axilla. I'm sure you'll have a scan too at some point.

    It is treatable, it just needs a bit more. 

    1. Thank you for replying.  I feel so lost. I am waiting to see oncologist and I don't know  what to expect. I had chemotherapy 18 years ago and I didn't  have a good experience . I really dont want to go through it again, but I know I must. What side effects have you experienced? 
  • It's natural to feel lost, but things have changed over the past 18 years, so hopefully you will have a better experience this time round.

    I got severe constipation (sorry if tmi), which was managed with regular laxatives and changing anti sickness meds. Pain with paclitaxol and filgrastim was the second main one, but manageable after the first time and I knew it was coming. There were some others (usual chemo fatigue, taste changes, nail changes etc), but again manageable, and I was prepared for them. I had a temperature twice and on one occasion ended up in hospital - the joys of having a tooth abcess while on chemo. 

    The team was very receptive to addressing any side effects quickly. And the plan and timeline was explained at the first appointment.

    I wish you all the best with everything.