Left in limbo after diagnosis
Yango
Member Posts: 13 ✭
I've just been diagnosed with breast cancer following a mammogram, ultra sound and biopsy. My GP is referring me to the hospital, which will take a couple of weeks. My GP says they aren't able to tell me anything about the cancer like the type or stage. I know nothing except that I have breast cancer. Is it normal for a GP not to have this information?
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The pathology on the biopsy can take up to two weeks to return. He would have a rough idea of the stage by the size of the tumor in the mammogram but unconfirmed until the results are in. It did take a couple of weeks for my surgeon to answer the referral. My GP by then had a full body CT and a bone CT done while we were waiting and sent a copy of the results on to the surgeon.
Find your nearest McGrath nurse and she can perhaps hurry things along a little. https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/0 -
I assume from your post that you are intending to go public for treatment. Your surgeon there should order the scans and blood tests but you can ring them earlier and find out the process. If you haven't been given them, you can ask your GP for a copy of your report from the tests you have had done. The information before surgery is just "this is what we think it is" - the real info comes from the pathology report after the surgery.0
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Welcome @Yango.
I see you're up in the wee hours as is to be expected. You will find so much love and support here on the forum. The beginning is the absolute pitts. The shock, confusion and waiting are indescribable to anyone who hasn't been there.
Your gp should refer you for the above scans like @Brenda5 has said so at least you can have those answers ready for the surgeon.
They never know exactly what they are dealing with until the thing is out and they get the full pathology done.
Keep busy if you can lovely and try not to read to much into Dr Google. There are so many different sorts of BC and everyone is different.
It seems a never ending waiting game at the beginning.
Keep talking on here if you feel up to it. We all understand how you are feeling right now and are here for you.
xoxoxoxox
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Good morning,
Firstly, we've all been there at this awful time in the beginning, especially at 3am, I actually saw your post at 4am when I was awake!
Secondly, sorry you've had to join us. The forum is really helpful to ask these kinds of questions and to vent frustrations.
I was diagnosed early Feb and left in the exact same situation as you, in the GP office I asked for a PET scan but she said no, the surgeons will know what they want to do. I ended up convincing my GP to order some bloods related to cancer just as a something to do in the mean time whilst we waited!
I couldn't really believe people get sent home like that to then stew with their minds, I thought it was an awful way to be told you have cancer now go home and you'll find out more later...at least there needs to be some sort of counsellor contact as your mind really goes wild then.
This is what I did and you haven't mentioned where you are, the larger the city the more options there would be for this:
If you have the money to do so, you can see a private surgeon in their office and pay their consultation fee, it is likely you'll be able to see someone before the public system is ready for you. This gives you an opportunity to ask an expert some questions about it all and get referred for body scans or if they don't want to send you for scans directly as they won't be your long term surgeon, you can ask what scans are necessary in a letter to your GP and your GP should order them from there. A chest/abdo/pelvis CT and full body isotopic bone scan are the general standard imaging needed.
Doing this just provided me with some piece of mind at such an early part of my cancer. I just couldn't sit around at 27 knowing I could potentially have advanced cancer and not know.
Alternatively if you have health insurance you can go privately for all of this.
As the ladies above have said, the final picture comes from the surgery result as things can change slightly.
A McGrath breast nurse is fantastic to ask lots and lots of questions to and help you understand what is about to happen.
Keep us updated
enjoy whatever activities you can this weekend to distract yourself, the more smiling the better. I remember my husband and I went to the driving range - just to do something different and take our mind off it for a couple of hours was lovely. 1 -
Oops! Sorry, @yango Very rude of me not to even say "welcome". Anyway...I'm not going to cast any aspersions on the public system because I know they do a great job. However, you will probably have to do some waiting. If you do choose to go private and the gap is an issue for you, talk to the doctor about it - in my experience, they will do what they can. But be aware, if you have to have radiotherapy, it's best to go public as health insurance does not cover it. (Unless, of course, everything changes and Labor gets in and makes good the talk.)2
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Hi @Yango welcome to the forum and glad you found us. I could imagine the stress you must be feeling as the waiting is just the pits.
I went public and after the initial mammogram, U/S then biopsy it was just the wait for a couple of weeks for results. The waiting is just the hardest part as you know you have cancer but feel so helpless. It is a whole new world and language. I got called to see my GP who broke the news of what type of cancer. ( only the type and stage ) this then followed a meeting with the surgeon who discussed options and what needed to be done to move forward. I can't speak highly enough of the public system. I had the same surgeon, ( I had 3 surgeries ) I had the same Oncologist who was the director of Oncology and I had the same Breast Care Nurse throughout. As the others have said it is not until surgery is completed things can change a bit as the full results of pathology come through. Once things start it will we a whirlwind and I know it sounds strange but once your team have worked out the best plan for you it comes as a relief as you know what will be happening and you can just concentrate on what needs to be done.
I know we all say try and relax but hey easier said than done for sure. Definitely don't google as a lot of those posts are old posts. ( yep I've had a peek at Google guilty as charged) All I can say is relax watch some netflix, read or go for some nice long walks or coffee with good friends. Just hang in there. Thoughts are with you. xo1 -
Hi there @Yango...I'm so sorry you've had to join our crappy club. The club is horrible, but the members within (and our moderators) are wonderful. Always remember, we all get it, we get the shock, disbelief and panic that comes with being diagnosed. We do, however also know from experience that as you get all the tests done, and treatment starts, you will start to feel more in charge of getting things moving forward. As others have already mentioned, the picture will only become clearer, once all the pre treatment tests have been done. Then the final answers, only after the post surgery pathology. In my case, I had two lumps in the left breast, both of which were slightly different in composition. This was discovered via the initial biopsies and dictated the treatment and the sequence of treatment. I think it's a bit like being told after a dip test, "You're pregnant". Only after an ultrasound, the gestation is known. Weeks later, you may wish to know the gender. If there are any concerns an amniocentesis may be performed to rule out genetic problems and so on. But it's only when the baby is born, that you get the full picture. All is revealed in stages, not all on the first day. Not the same delight with BC, but the full picture is unknown at this time. Hang in there, try to distract yourself if possible, and come here any time you need an electronic shoulder to lean on. Biggest hug....Ally,0
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Hi and welcome!
I'm putting a link here which will give you the opportunity to explore the BCNA website.
As others above have said your GP can't tell you precisely until such time as you've met the specialists and sometimes that may vary again
Try to keep yourself distracted
Once you're in the system you'll find time will pass quickly
Your GP will be your go to as well as. I consider mine as my medical rock
I am a private patient. In the public system my surgeon mentioned they have KPIs to meet so don't fret
Take care
https://www.bcna.org.au/understanding-breast-cancer/new-diagnosis/getting-through-the-first-few-weeks/
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Hi Yango. Some excellent advice above. Right now you could and should be told a size and a grade (the level of activity of the cancer cells, 1 is slow growing, 3 is fast growing). This tends not to change but the size does. Mine doubled on size once they'd removed it and examined it. Ask your GP for a copy of your biopsy report. You are entitled to it.
Someone above referred to some scans as being standard. In my experience that's not so. I had zero scans. It often seems to be at the discretion of your doctors. It also depends on your age, the size of your tumour, and whether it's spread to your lymph nodes. Some people find lumps in their armpits to start with so go straight to MRIs.
Rest assured that nothing bad will happen while you wait. While every fibre of your being is screaming get this thing out of me, there's no issue with a wait of a few weeks. Sometimes it can even help with the adjustment and processing of the news.
If the wait does get too much, as many have said above, ask your GP to refer you to a private breast surgeon. My surgeon charged a gap of $500.
Take some deep breaths, they help calm the nervous system, and hang in there. Once a treatment plan forms you will feel better. Big hug, K1 -
Hi yango, Where are you located? I had a very similar experience last year & don't live in a big city. My GP gave me hardly any info & I had to insisted for the copy of Breastscreen report & naturally, googled the crap out of it myself. The "breastcancer.org" site in the USA is also a good reliable site. Like everyone says, the waiting is the worst. My GP didn't even make my appointment for the Breast Surgeon, so as you can imagine , I have since changed GP's. I had surgery at Regional Public hospital within 1 month.Post surgery.. delays for Oncol appointments/surgeon follow up & path results dragged on, so after 6 weeks waiting & my sanity eroded, I switched to a Private Cancer Hospital in Canberra for consultation and Radiation. I don't have health insurance & 4 weeks treatment cost $3800 including 4 Radiotherapy Oncologist appointments & 8 Medical oncologist Appointments. FYI, my Breast Surgeon charged me $160 for a consults, so they are not all expensive.I thought i would give you some $$ as it handly to have comparisons . Hang in there & my tip is to always take someone with you to all specialist appointment...2 sets of ears is really handy. Happy to field any questions as I'm 4 months post surgery now .
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Thank you all for your comments and helpful advice. I'm still waiting to see a surgeon. The 'not knowing how bad my breast cancer is' is the worst part. My GP says that due to all the public holidays this time of year, things will take even longer than usual 😟.0
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This is true @Yango, the medical staffing all went to hell in a handbasket over the Christmas / New Year period following my diagnosis too. Hang in there, and in the meantime, try to keep yourself distracted, which we all know is almost impossible, but try all the same. Also remember to visit this group whenever you feel like, we have your back here...Ally.0
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Morning @Yango. I am at the same position as you are. Let's hope nothing bad happens during waiting. I'd rather focusing on my diet and lifestyle now. The tough journey will begin anyway. So I decided to enjoy my normal life(?)as much as I can.I try to excercise and get sunshine everyday. Also,I changed my diet to lots of vegi with balanced nutrtion. I consider it as part of my treatment. Let's put it this way, we already started our treatment by changing something,like diet, quality spleep,exercise and mind control. For example,hair and nail are the fastest growing parts of our body. I dont think tumor will grow in the same speed of those. Fingers cross!!So hope we will be ok. I am also worried too much.But it does not help anything. Hope you feel less worried now.1
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Hi @Yango - sorry to see you've joined the club - but ask any question of us & we'll give you honest & helpful answers as we've all 'been there'.
The shock & stress of being diagnosed is not a good experience - and the waiting for the appointments etc is the pits - so please make sure you have someone with you at your appointments as a 2nd set of ears. Being in shock - you don't always 'take in' everything that is said at the time. I recorded my appointments so I could go back over it afterwards, too.
Even if you have private health insurance, there can be big $ gaps over time .... ask the surgeon about his fees - he may be able to treat you as a public patient & not have the added expense of going private. I had surgery private & am about $6000 out of pocket, yet for my radiation I went 'public' & it cost nothing. I live in a rural town, so had to go to a major town for the surgery & radiation - and the hospital had a hostel in the grounds, where I stayed for very low cost for the 4 weeks for my daily radiation. It was almost a holiday, as the radiation didn't affect me too much at all (other than some emotional blips!) I completed my radiation this time last year.
Where abouts are you roughly (city/town) as we have members in most areas who may be able to put you onto services available near you - or even catch up for a chat if you like. @marcel - you too - if you put your 'city/town' in your profile, others may be able to be more specific re what's available near you.
Once you have your surgery & pathology & have a plan - it will all slot into place. It is just this 'no man's land' right now that is so painfully annoying & frustrating! grrr
take care xxx0 -
Thanks you all for your advice and reassuring words. Has anyone who has gone through the public system able to give me a timeline of how long things take to happen? I know each hospital will be different, but my GP hasn't been able to tell me if waiting to see the surgeon is a two day wait or a two month wait. I really don't know what to expect at all and it's making me anxious.0
