Feel in limbo
sheryn
Member Posts: 22 ✭
HI , just need some advise as I don't know or who to ask with what comes next.
I was told to wait for a phone call!
I had my breast lumpectomy 3 weeks ago, 10 days later I have seen the doctors for results. Stage 2 cancer and in lymph nodes too so he told me chemo will come first. the Doctor said he will contact the medical oncologist and they will get back to me.
next tuesday will be 2 weeks will no contact at all.
Is this a normal time frame to wait to be left we my thoughts ( not good) and not knowing what is happening or how long it will take for an appointment and to start chemo? I have no one to call or talk to!
Advice and guidance would settle me greatly.
I was told to wait for a phone call!
I had my breast lumpectomy 3 weeks ago, 10 days later I have seen the doctors for results. Stage 2 cancer and in lymph nodes too so he told me chemo will come first. the Doctor said he will contact the medical oncologist and they will get back to me.
next tuesday will be 2 weeks will no contact at all.
Is this a normal time frame to wait to be left we my thoughts ( not good) and not knowing what is happening or how long it will take for an appointment and to start chemo? I have no one to call or talk to!
Advice and guidance would settle me greatly.
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Comments
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Not really, you should at least have a meet and greet appointment by now to discuss what chemo you will have. Any Dr including your GP can look up your file and tell you if there is an appointment or not. An orientation appointment with a nurse who will show you the chemo set up and all the do's and don't you need to know, and a booking for the actual chemo itself and a blood test before that. I presume you have had the bone density scan and ct body scan? I had Christmas in the between surgery and chemo so I started in the new year. I was still healing from surgery and it was a few weeks. Still remember Christmas and New Year in the emergency dept getting seromas drained from my wounds.0
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That's a long time. If you know who you have been referred to, ring their offices and find out if they have the paperwork and what waiting time you should expect. If you live in the city there will be more than one option regarding medical oncologists. There are usually options in the country too, they just may not be very convenient. Always keep that in mind.
It may be the last thing you want to hear, but please don't automatically assume that someone has done what they are supposed to. Things get lost in transit--all sorts of stuff can happen that needs to followed up. Management of your cancer treatment is a complex project--never be frightened to pick up the phone and ask what is going on.0 -
I have had nothing done not extra bloods or test done I have not been told anything!0
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I think a follow up call (or three!!) is definitely warranted. That's a long time in limbo given you have a diagnosis. I am in Sydney but I was in surgery within a week of biopsy results. I got calls galore! I probably wanted it to happen slower but hospital didn't let me! Cancer isn't a medical emergency but limbo is torturous, and getting started with treatment is important for both physical and mental health.
take care,
jen
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Hi! Agree ring the GP office and ask who you are being referred to. Do you have a referral from the GP? Since you've had a lumpectomy do you have a breast care nurse? Take the initiative as it is just knowing that gives you some sense of order.0
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Nop no breast care nurse either. What havent I chase up. when do u get a breast care nurse? looks like trying to find someone to phone NOW!0
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http://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx you can find a breast care nurse on this link.
You get some more information and support here https://www.bcna.org.au/resources/
Take a breathe and then ring and ask why you haven't heard about your appointment.
Hugs
alice
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Breast care nurse will want to know who your surgeon is, GP and oncologist so have your information ready so that she can help you. Alice has given you some great links here!1
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Hi Sheryn, I agree with everyone else's comments here: you need to make the call. Unfortunately, sometimes it becomes clearer and clearer in this breast cancer 'journey' that we have to be our own best advocates. There's nothing wrong with wanting to get appointments and treatment plans sorted out! Because, once you ahve these things in place, the stress levels do tend to subside a little.1
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Hey Sheryn, I have to say that sounds really odd! Nope I woudnt sit on that at all, so your results were they from your GP or Surgeon as thats very different. Neither of them can comment on what your plan would be but an Oncologist based on your pathology. So whoever said they'd contact an Oncologist? Id ring their office and ask who the Oncologist was you are being referred to, make sure you have that referral and ring the Oncologist directly and ask them about the appointment. Once you get there, that is when all will be explained and you'll know exactly what you have and how the treatment plan should look, as its different for everyone. Let us know how you go!!! Hang in there! xo Hugs Melinda2
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Thanks for all your help today. I finally got though to the doctor and was given my medical oncologist name. They gave me an appointment on the 27th this month through the public system. But if I go private i get in on the 22rd of march. I did take the private appointment on the 22rd I hope I have taken the correct path. At least I now have an appointment.
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Sheryn sounds good! Ive always done private and it was good all treatment. Are you in Melbourne? I go to Epworth Freemasons. X Melinda0
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Im in newcastle Melinda0
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Oh ok well hope you feel a little easier with a date now locked in, its only a few weeks and honestly it will be more than fine. Hugs x1
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That's good Sherryn not too long to wait. If you can take someone close with you to the appointment. The first oncologist appointment is full on with information.
Hope you connect with a breast care nurse soon.
Have you received your free My Journey kit from BCNA. It's a wealth of information
Take care0
