Hi, I'm still in 'the waiting place' and trying to give myself some idea of what may be ahead.I'm waiting on EndoPredict results to help determine if I will have Chemo. It appears that my onc appointment at the hospital has been pushed back from today to Friday (not sure, they just send me texts, I've called a few times since late last week to discuss and they haven't called back).I'm due to go back to work (primary teacher, grade 2) next Monday - 6 weeks after my mastectomy/reconstruction.If I got my results today as expected, it's enough time to make plans with work. I've given my boss the heads up that I may need chemo/more time off. However, I can't wait until Friday night to tell her that I can't come in Monday as planned. We would want the teacher who has been in there the past 6 weeks to continue, so would need to book her in.My question:I'm sure this will vary a lot public private etc. but how long was it between being told you need to have chemo and starting that treatment?It would be TC every 21 days x4 at public hospital (Maroondah).

Once the results of my biopsy came back things moved very quickly for me. Whilst awaiting those results, I'd had a head, chest and abdomen CT scan as well as a bone scan, to check for further spread. This was about a week from taking the biopsy until the result. Then I was told I would be having chemo and was booked in to have a port put in and that was three days later. The same afternoon that the port was put in, I started my chemo. So all up, from the taking of the biopsy till start of chemo, ten days.

@StrongCoffee I am not sure there’s a ‘common’ time - it depends. As you’ve had surgery, chemo might start soon, assuming it’s recommended and you decide to go ahead. You may need to consider extending the current arrangement just to give yourself time to get the results and determine your next steps. Can you discuss this with your boss? Best wishes.

I got confirmation that my appointment has been pushed back to Friday as the results aren't back yet.Decided to take another week off work. My boss was fine with that and the teacher who has already been filling in is available. I'd possibly be ok back next week but would be so sore and tired by the end of each day, a bit more rest won't hurt.That way if I do find out I need chemo then I should have some time to get things sorted first. The onc said they try to do it on Fridays for people who work.Not even crossing the whole 'can I work through chemo' bridge until I know if I'm having it or not!

Good news for you, @StrongCoffee. One win. 💗

I had my second surgery on 8 January and I think my surgeon told me a few days later that I would be having chemo (hard to remember). I had the initial appointment to discuss chemo around about 20-something January and my first chemo treatment on 5 February. However I know that other people have different times.

How long from being told you need Chemo to starting treatment?

18 Replies

Keeping_positiv
Member
5 years ago
@StrongCoffee so pleased that chemo is off the table for you. I wish you all the best, as one less thing for you to be concerned about.
Go well, and take care. xx
StrongCoffee
Member
5 years ago
@Keeping_positive1 I'm so sorry this has been so drawn out for you. I have found all the various waitings for each step quite awful!
Keeping_positiv
Member
5 years ago
I am sure in my instance my long drawn out process has been a reason I am still not moving forward, particularly when I hear others saying they didn't have to wait long. I am pleased for those that didn't wait long, but I don't know why I was so left behind despite being Stage 3 and in lymph nodes from the results I received at Breast Screen. If I had known I was going to have to wait for surgery for 2 months, then another 6 weeks to start chemo I may have made different decisions at the time.

If I had my time again I would not go public, but I would have tried to use superannuation to go private.

@StrongCoffee I am very pleased you are moving forward and feeling positive, it is really great. Best wishes.
StrongCoffee
Member
5 years ago
Thank you both - it is such a big relief! I have to say I'm probably feeling the most positive I have in the whole time since I was first diagnosed!
noosa_blue150
Member
5 years ago
Great news for you ! All the best
June1952
Member
5 years ago
Good news for you, @StrongCoffee. One win. 💗
StrongCoffee
Member
5 years ago
I just wanted to update that my genomic testing has come back low risk and chemo is now ofically off the table. Starting tamoxifen shortly as I have the script ready to go.
StrongCoffee
Member
5 years ago

noosa_blue150 said:

Do you have a breast care nurse allocated ,to,you ? ( there’s usually one or two in public hospitals, their role to be liaison between surgeons/oncologists/radiation drs and other health team members). If there is one I’d ringing and asking them that question re when will chemo start ; is this Friday’s appointment with oncologist to go firm with chemo regime OR are they starting chemo ; and do you want /need a Portacath . Lack of Portacath shouldn’t hold up chemo , they’ll proceed without it until it’s inserted if required.
If there’s no breast care nurse I’d be contacting the hospital and ask about the onc appt for Friday -is it only with oncologist or is it with onc dept/ward for chemo.

I've seen one of the public hospital surgeon's privately since the mamogram results requested a biopsy and he has a lovely BC nurse who has been so supportive. She also sometimes works at the hospital. I also know someone who works in oncology there, so they'll be able to help with practical questions if I do start chemo.

I agree with your advice on all things BC though - the BC nurses are just so helpful!

Friday's appointment is telehealth and definitely just with the oncologist to agree on the next steps of treatment once the genomic test verdict is in.
StrongCoffee
Member
5 years ago

Keeping_positive1 said:

I was very disappointed in the timeframe from diagnosis until my bilateral lumpectomy, being 2 months a one day. Then a further 6 weeks to start chemo. I am sure part of the problem was I was in the public system and at a very busy oncology department in Melbourne, being ONJ cancer clinic in Heidelberg. I am sure that is not going to be your experience, so I hope I do not sound too negative about our public hospital system, particularly at ONJ in Melbourne. .

I wish you the best, and I am sure you will not experience what I experienced, despite I was Stage 3, I am sure it has left me trying to keep positive, as my name suggests. Are you a private or public patient ? It makes a difference!

Thanks, I am public but I've also seen the surgeon and plastic surgeon's who practise out of the hospital privately which helped speed up some of the steps. I did have a month's wait from signing off the surgery I wanted to getting the surgery. They said this may be the case as it required the two surgeons.

It does feel like this has been such a long, drawn out process. But then my cancer was only grade 2 and my surgery has removed it all. Medically I am NED now. Chemo would be precautionary.
StrongCoffee
Member
5 years ago
@Mazbeth thanks for sharing, nice to hear from another teacher!

There is only a specific group of BC patients who are recommended for Genomic testing to determine chemo suitability. (From memory: grade 0-2, 0-3 lymph nodes - preferably zero -involved, Hormone+ HER- ). Hence why it doesn't get offered as standard. Plus it's still not publicly funded. My Ki67 was also low (9), indicating that chemo may not be highly effective.

I'm all out of sick leave and, due to moving interstate 7 years ago, don't qualify for LSL yet. Thankfully we decided (pre-cancer diagnosis) to make some lifestyle changes including selling our investment property to reduce our expenses. Thankfully this means that we aren't under much financial stress at the moment. I feel so fortunate and grateful for that fact.