Hello everyone,
First time posting on here and really hoping for some positivity and advice.
I was diagnosed with an invasive primary breast cancer in May, had a lumpectomy beginning of June. The cancer was.PR+,Er+ and HER2+, Grade 3 and lymph node negative. I was referred to oncology for chemotherapy and targeted therapy on 3rd July.
I still have not received an initial appointment and am getting increasingly concerned about missing the magic 12 week window to start chemotherapy for best results.
On contacting oncology I was told I’m on the list and that there’s 3/4 people in front of me. They are already booked up until the 6tj August. I’m already 6 weeks post operation and am really concerned that my chemo will now start later than 12 weeks post surgery.
Is there anyone who has had this type of wait too and is there any way to expedite yourself up the list at all?
I have been ok about everything until now, I feel very anxious and sick worrying about.this.
Thank you for any advice you can offer
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Hi there puppydogpaws77.
So sorry that you’ve had to find yourself on this site, but it’s a great place for info and support from people who are either in, or have been in your shoes. I had an invasive lobular cancer diagnosis way back in November 2013. Mine was different in that it was Er & Pr pos, but HER neg. My follow on treatment changed from rads only to chemo and rads as time went on from my original diagnosis. I eventually started chemo in March 2014 which was 17 weeks post diagnosis. I worried myself sick during that time and felt every twinge or pain was evidence of secondaries, but I’m still here coming up for 13 years later with NED. I did bombard my breast care nurse with phone calls at the time to try and get things moving, but I’m not sure it did any good. It’s so hard while we’re in limbo and waiting for treatment to begin not to worry! Wishing you all the best with your forthcoming treatment and hope that you’ll be the one passing on info to other ladies on this site in the future. Take care xxx
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Evening @puppydogpaws77
If you’ve not found it already, the HER2+ and need some buddies is worth following and seeking advice and support. Ours is a long treatment path and the ladies on there are a fount of all knowledge. I have found it an invaluable source of friendship, wisdom, and kindness.
They will have a set number of appointment slots each week for follow ups and new referrals. They must have an idea of the wait time if those have been filled
May be worth phoning your breast care nurse to ask what the expected timescale is for starting treatment after surgery, you could phone the booking team to inform them you would accept a cancellation at short notice and if you have no joy, phone PALs (patient advice and liaison service) to express your concern. As hard as it feels complaining, speaking out highlights to those in charge that demand is greater than the resources and as a consequence change happens .x
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Thank you so much and I will look at the group you suggested. X
Thank you for the advice. I now have a heart scan on the 10th August and my initial appt with the oncologist on the 21st Aug. I am feeling a lot better about it all now. I’m guessing that after the initial oncology appt I should start chemo in 1-3 weeks after that. Is that an accurate guess??
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