Im new to this forum and feeling devastated by my recent diagnosis. I’m hoping to connect with someone who may have had a similar experience.
I was diagnosed with primary breast cancer in June, had surgery in July and was due to start radiotherapy in September. My oncotype result suggested not to have chemotherapy. The day before radiotherapy started I was contacted by the oncologist secretary and had an urgent appointment the following day. The radiotherapy planning scan showed another tumour in the internal mammary node which is not operable. This had been present on the initial MRI scan but missed by the radiologist! I have therefore been on the wrong treatment plan. I am now having drug treatment rather than chemotherapy initially then radiotherapy at some stage.
I feel that I don’t fit with either primary or secondary breast cancer groups at all and the rollercoaster of my diagnosis has been really traumatic. Having initially been given an optimistic prognosis I’m now feeling really overwhelmed.
Would appreciate hearing from anyone who has had a similar experience.
Hi Marie9, sorry you find yourself here. I just wanted to say hi. Hopefully someone will be here shortly with similar experience. I was stage 3b at diagnosis in March 2019 and had chemo, surgery, radiotherapy and now on Tamoxifen. I had 9/12 “armpit” nodes involved and had radiotherapy to my intra mammary nodes and supraclavicular fossa as a precautionary and I’m still doing well. Have they offered radiotherapy to these nodes? This technique is fairly new and may not be rolled out nationally. The radiotherapists have specialist training for this treatment.
Hiya @Marie9 I’ve just been reading your thread and I’m so sorry for all you went through. I recently was diagnosed & am under investigation for a suspected internal mammillary LN involvement. Could you provide insight on spread to this area and its treatment? Like you I’ve been told it would be inoperable. Hope you are doing well! Xx
Hi @Marie9. I don’t know anything about intramammary nodes, but i do know how it feels to be in your situation. I was diagnosed last december via mammogram and ultrasound/biopsy. I did have 3 surgeries for my lumpectomy as they kept finding more. It was planned that after surgery I’d have radiotherapy but my lymph nodes were involved. Just when surgeon finally signed me off to oncology, a radiologist in mdt said there was another area of suspicion on original mammo from last December, so 8 months into this, I’m back at square 1, having more tests again. I’m expecting it to be another tumor or dcis.
All i can say is, i feel the same. I have no wise words or helpful advice except my own empathy. On the bright side for you is that you’re only a short while into this journey, and the new concern has been identified early on. Yes, your treatment plan may change, but its so good they found this now or youd be facing a worse situation in years to come. Like the other lady mentioned, special radiotherapy can be used on inoperable sites too.
Whatever the new plan, try to see it as a series of steps that you can tick off. Someone said to me on here that this is now your job and you must work through each task before the job is fully done. This helped me to feel less overwhelmed by whole situation.
Keep us posted and i hope all goes well and your waiting times are speedy. X
Hi to you all for your replies and taking time to respond
I’m sorry I didn’t pick up the first message at the time so there has been a delay in my reply
I’m so sorry to hear about all your experiences…… I hope my journey so far gives some hope
My cancer had also spread to small areas in the lungs but it has all responded really well to fulvestrant and ribociclib. Unfortunately I developed toxicity to the ribo and had to stop it after two and a half years but the fulvestrant on its own is still working well. I was NEAD after a year of treatment and now five years on I’ve got a slightly enlarged intermammory node but otherwise no evidence of disease elsewhere and remain just on fulvestrant injections.
I really hope you have a good response to treatment and please ask any further questions and message to let me know how you’re doing x