I was initially diagnosed with cancer in 2021 which post surgery was diagnosed as triple positive, grade 3 oestrogen 8, progesterone 3 and HER2 2:11.
Post lumpectomy and re-excised margins, sentinel nodes clear, I had 3x EC, 3x docetaxol ( 2 with herceptin, no room in clinic for me to have all 3 with docetaxol), 5 whole breast radiotherapy sessions ,a year of herceptin , anastrazole and zameta 6 monthly.
Unfortunately in the month before completing herceptin I was devastated to be found to have a local recurrence which took an excision biopsy to diagnose as, although I could feel 2 small lumps, they didn’t show on mammogram or MRI scan. The tumour is now grade 3 , oestrogen 8, negative to progesterone and HER2 2:54
I had a mastectomy 4 weeks ago and am due to see the oncologist in 2 weeks time.
In order to prepare my self for this appointment, I wonder if you could let me know what treatments may be available to me so that I can do a small amount of research and be able to ask relevant questions. Obviously my expectations of survival are very low as the cancer has come back during all this treatment and has changed in its pathology.
Hello, I’ve just read your message and have every sympathy for your situation. I am only slightly ahead of you having had a reoccurrence of my breast cancer a couple of months ago. I prepared myself in advance for seeing my oncologist last week so I can tell you what happened to me.
I was first diagnosed in 2018 with a grade 3 carcinoma that was weakly ER positive and HER2+. Like you I had a lumpectomy then chemotherapy (paclitaxel) weekly for 12 weeks alongside a year long course of herceptin injections every 3 weeks. After the chemo I had radiotherapy (15 sessions). I thought that I would now be clear but my last mammogram picked up another tumour very similar to before i.e. Grade 3 and HER2+.
This time I had a CT body scan to see if there were any cancer cells elsewhere in my body (there were none - hooray) and then had a mastectomy after which I was referred for adjuvant therapy with the same oncologist as before. This was good as I felt he was very experienced, knew my situation and would not avoid plain speaking if need be.
I researched what new treatments might be available as I knew i wouldn’t be offered radiotherapy again and any immunology treatment was not appropriate as I was not oestrogen positive (I think that is the case but worth checking out). There didn’t seem to be much. I did not want chemo again as it was horrible first time around and obviously didn’t really work!
However I was pleased with the outcome of the meeting with the oncologist as he listened to my fears and we reached a reasonable compromise regarding treatment. I was offered chemo and herceptin again but decided only to accept the herceptin. What influenced my decision was the knowledge that I had a 1 in 5 chance of dying of breast cancer if I didn’t have any treatment but that having herceptin would reduce that considerably. In other words the odds were still very much in my favour. I felt no pressure to accept chemo but was strongly advised to accept the herceptin.
So please don’t assume your chance of survival are very low as it depends so much on the type of cancer, your age (I am 70+), general overall fitness and what else might be on offer.
Very best of luck with your meeting.
Good Morning Bonnie 52
Thank you so much for your reply.
I’m so sorry you’re having to go through this again too.
Thank you for sharing your experience. I feel terrible saying I’m pleased not to be alone as I would not wish this on any other person, but it does tend to be quite a lonely journey we take.
If you don’t mind me asking, will the herceptin be long term?
I am also strongly oestrogen positive again as well and so will need a different hormone treatment too.
Thank you again and I wish you all the very best in your treatment
Hello Sparrowhawk (great name by the way!),
I feel the same way as you which is why I responded. I had looked before to see if there were any recent relevant posts but yours was the first one.
To answer your question, I was told by the oncologist I would be monitored with the Herceptin for a year and it should ‘do its job by then’. It didn’t occur to me to ask if it would be longer term but I certainly will ask next time.
I think the reason the chemo option wasn’t pushed was because the CT scan and sentinel nodes showed no sign of cancer cells but I have to say that I had really thought long and hard about whether to would accept chemo regardless. I am also aware that chemo is very much a ‘broad brush’ approach to any cancer and newer forms of treatment (such as Herceptin and immunological approaches) are more targeted. For me, quality of life is more important than quantity but I know that everyone is very different. Honest conversations with partner and a family member (not children) who was a medic helped clarify my thinking.
Best of luck and if you feel able, do post a message on how you get on when you see the oncologist.
My scans to date have also been clear which is a relief and the nodes they managed to find, a rather long and boring story, were clear too at this point.
It is a rather strange position to be in with a local recurrence and as you say, not many posts about it and so I will definitely post again to let you know what treatment has been decided .
My results letter said that the hormone treatment would be changed and herceptin discussed, there was no mention of further chemo and like yourself I’m not sure about going through all of that again,
Thank you again for replying.
PS Sparrowhawk is our dogs name!
Thanks for posting.
A local recurrence usually means that breast cancer has come back in the chest or breast, or in the skin near the original site or scar. This happens to a number of people and can happen at different time points following treatment for breast cancer.
However, having a local recurrence doesn’t mean the cancer has spread. Your future prognosis (outlook) will still depend on many different factors. So as Bonnie52 mentions, experiencing a local recurrence won’t automatically mean that the chance of survival is the very low.
Your treatment team will want to offer you further systemic treatment (hormone therapy, targeted therapy, chemotherapy, or a combination). They will need to consider the best options for you depending on the final pathology of your recurrence and the treatment you’ve had before, so it’s not possible for us to be certain what treatment you’ll be offered.
At times like this, talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email and they can share their personal experiences to answer your questions, offer support or simply listen to how you are feeling.
You can ring the Someone Like Me team on 0114 263 6490 or email them at firstname.lastname@example.org, so they can then match you to your volunteer.
You might also find it helpful to call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen to your concerns, talk things through and signpost you to more support and information. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK - prefix 18001).
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Breast Care Nurse
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