I had a wide local excision and lymph node removal 12 days ago and still have not been given any results. I was told the multi-disciplinary team was meeting today on my case and the results would definitely be ready for them today. I have an appointment on 2 February where i expect to be given a flood of information and a treatment plan and no chance to even think about what they are telling me or think of questions I want to ask. I know they are stretched due to COVID but I feel sick with anxiety. Have other people experienced similar delays in getting results? Does anyone have any tips for how to improve communication with their specialist? I’ve asked the breast care nurse but she’s reluctant to tell anything she thinks the doctor should tell me and my GP isn’t being told anything either.I’m doing meditation and deep breathing but it’s getting harder the longer I have to wait.

Hi @Annette77 Unfortunately everything is slower with Covid☹️ As it is having a massive impact on the hospital system.Also this time of year a lot of medical staff are taking annual leave.I had my mastectomy in October 2020 when things in Sydney were a lot better than they are now - for example I was allowed a visitor in hospital ( only one per day) whereas now no visitors are allowed at all .I was given my pathology results by my breast cancer surgeon at an appointment 2 weeks after my discharge from hospital.My case had to be discussed with the multi disciplinary team first.My situation was that I had ER positive lobular cancer in the left breast sized 5.5 cm with nothing in the lymph nodes.My breast cancer surgeon told me at that meeting that he got all the cancer , it had not spread to my lymph nodes and that I needed to see the oncologist about whether chemo was recommended and the radiation oncologist about whether radiotherapy was recommended.I saw the oncologist and radiation oncologist within another 2 weeks.I was recommended to have radiotherapy but not chemotherapy and also recommended Letrazole for at least 5 years) .I couldn’t start the radiotherapy for another 4 weeks after I saw the radiation oncologist mainly as I couldn’t fully raise my left arm after the surgery.She was not concerned about that delay.I started the hormone therapy after I finished radiotherapy ( 5 weeks ).Try and keep busy in the lead up to your appointment and meditation is great - I went back to it after my diagnosis after taking it up some years before.

Hi I did do a lot of reading both of the cancer council breast cancer brochure and stuff in this website so I had a good idea what to expect.My breast cancer surgeon talked me through the option of lumpectomy versus mastectomy at the pre mastectomy consults and explained if he couldn’t get clear margins he might have to come back and do a mastectomy .I decided on mastectomy due to the size of my tumour and the fact it was lobular which is more like a spider web than a near lump.He didn’t talk about chemo, radiotherapy or hormonal therapy before the mastectomy as he said “ we won’t what we are dealing with until we get the pathology from the operation”.To some extent we have to trust the medical experts, I found my team ( who work in both the public and private hospitals at St Vincent’s here in Sydney) amazing.

Sorry it is taking a while for your results @Annette77 ... as @Julez1958 said, this time of year is like that, even when mine was done in 2018 and no covid! ... It took at least 2 weeks for my results (probably longer as Australia Day was factored into mine as well) & even then, some hadn't been finalised when I saw the surgeon .. Feeling overloaded is a totally normal feeling to have as you've had a rather harrowing experience up til now .... Try not to overthink the whole thing, difficult tho it is - as the team will be discussing the best ongoing treatment options for you. Your GP should be included on all reports from all the specialists that you see - but in this case, it is the surgeon initially, who will give you the results, not your GP - as he'll want to examine you thoroughly to see how you've healed & will also be explaining the next steps & who he wants you to see (Radiation Oncologist and/or Medical Oncologist.)Make sure you take a trusted friend or relative with you (as an extra set of ears as well as support!) to the meeting with the surgeon - and record it on your phone so you can go back to it afterwards. If you thought he 'rushed you' on the first meeting - maybe mention that at the start & ask him to go thru everything a bit slower ... Check out this post, which has 'tick sheets' down the bottom of the page to help you formulate some questions for your surgeon (and the rest of the team) post op, and further down the line. The pics in the post are just 'samples' - you need to click on the documents down the bottom to download the full document.https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment/p1take care & all the best for your results xxPS. The occasional drink now & then shouldn't hurt you ;)

Thanks, everyone. I’ve been telling everyone who will listen at the hospital how anxious I’ve been feeling and how much I would really appreciate getting results when they are available. It worked! I got a call late yesterday from the surgeon’s fellow, who had finished his placement but called because he said he knew I’d be anxious waiting. He was very kind to do that.There was good news - they got all the tumour out (clear margins) and the lymph nodes were negative. But there was bad news - it’s a more aggressive faster growing cancer (grade 3). That was a shock I wasn’t expecting. I’ve been doing a lot of crying. My prognosis is significantly worse and I’ll have a more aggressive treatment program. But at least I’m getting my crying out of the way and dealing with the shock before my appointment next week so I’ll be able to listen to what the surgeon says and prepare some questions to ask.I’m taking my 30yo daughter with me to the appointment and I’ll ask if I can record it on my phone. I think I’ll be referred to a medical oncologist to discuss chemotherapy and the results of genomic testing of whether chemo will help. I think they might also be doing genetic testing to find out why my cancer is aggressive, despite being ER+, PR+ and HER2-, but that will take months to get results.Good luck,@Fernweh. I agree it’s important to be assertive. A few tears might help too. And thanks when someone takes the time to give you information.I’m planning to tell the surgeon, who I’ve only met for 3 minutes, that I do better with time to think about things and more rather than less information. It must make it easier for the surgeons and other doctors to have patients who aren’t highly anxious and stressed and not taking in what they’re told.Thanks for the link to questions, @arpie.

Well done YOU @Annette77!! The Squeaky Door & all that! I hope it wasn't too confronting getting the info over the phone and crying was definitely a normal reaction, even cathartic! Definitely ask about recording the appts & also ask for printed copies of everything (pathology etc) and get a box ready at home for storing everything (an expanding file is not big enough, I've found!)Write down all your questions (I do it on the computer, as they'd never read my writing!) and I give THEM a copy, as well as my own copy in front of me .... I leave spaces for taking notes of the answers ..... and don't leave until ALL your questions have been replied to! Take care & all the best with your appts in Feb 2 xx

12 days since lumpectomy and still no results

17 Replies

Locksley
Member
4 years ago
@Annette77 the waiting is hard. Try to be kind to yourself.
arpie
Member
4 years ago
Sorry it is taking a while for your results @Annette77 ... as @Julez1958 said, this time of year is like that, even when mine was done in 2018 and no covid! ... It took at least 2 weeks for my results (probably longer as Australia Day was factored into mine as well) & even then, some hadn't been finalised when I saw the surgeon ..

Feeling overloaded is a totally normal feeling to have as you've had a rather harrowing experience up til now .... Try not to overthink the whole thing, difficult tho it is - as the team will be discussing the best ongoing treatment options for you. Your GP should be included on all reports from all the specialists that you see - but in this case, it is the surgeon initially, who will give you the results, not your GP - as he'll want to examine you thoroughly to see how you've healed & will also be explaining the next steps & who he wants you to see (Radiation Oncologist and/or Medical Oncologist.)

Make sure you take a trusted friend or relative with you (as an extra set of ears as well as support!) to the meeting with the surgeon - and record it on your phone so you can go back to it afterwards. If you thought he 'rushed you' on the first meeting - maybe mention that at the start & ask him to go thru everything a bit slower ...

Check out this post, which has 'tick sheets' down the bottom of the page to help you formulate some questions for your surgeon (and the rest of the team) post op, and further down the line. The pics in the post are just 'samples' - you need to click on the documents down the bottom to download the full document.
https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment/p1

take care & all the best for your results xx

PS. The occasional drink now & then shouldn't hurt you ;)
Annette77
Member
4 years ago
Thanks, I’ve been doing a lot of research and reading websites from US hospitals, the Cancer Council website, and this website. Steering clear of anything that isn’t offical. But I don’t know what applies to me because the only results I have from before the surgery were borderline. Even just knowing if it’s spread or not would help me prepare myself mentally. At my first appointment I felt I couldn’t take in what the surgeon was telling me because it wasn’t explained and it contradicted what her follow had just told me. I’d have a stiff drink except that I’m avoiding alcohol.
Julez1958
Member
4 years ago
Sorry I meant to say that I understood radiotherapy was almost always recommended after lumpectomy but rarely after mastectomy and hormone therapy usually recommended for ER positive cancer.
Chemo may or maybe not be recommended depending on the pathology results.
Julez1958
Member
4 years ago
Hi I did do a lot of reading both of the cancer council breast cancer brochure and stuff in this website so I had a good idea what to expect.
My breast cancer surgeon talked me through the option of lumpectomy versus mastectomy at the pre mastectomy consults and explained if he couldn’t get clear margins he might have to come back and do a mastectomy .
I decided on mastectomy due to the size of my tumour and the fact it was lobular which is more like a spider web than a near lump.
He didn’t talk about chemo, radiotherapy or hormonal therapy before the mastectomy as he said “ we won’t what we are dealing with until we get the pathology from the operation”.
To some extent we have to trust the medical experts, I found my team ( who work in both the public and private hospitals at St Vincent’s here in Sydney) amazing.
Annette77
Member
4 years ago
Thanks, @Julez1958. Were you given time to absorb the information? I feel like I’m being overloaded with everything at once and I’m not part of the decision making at all. I’ve never been given options or told what to expect or even what side effects I could have. I don’t know why they won’t tell me the results before the team discusses them.
Julez1958
Member
4 years ago
Hi @Annette77
Unfortunately everything is slower with Covid☹️ As it is having a massive impact on the hospital system.
Also this time of year a lot of medical staff are taking annual leave.
I had my mastectomy in October 2020 when things in Sydney were a lot better than they are now - for example I was allowed a visitor in hospital ( only one per day) whereas now no visitors are allowed at all .
I was given my pathology results by my breast cancer surgeon at an appointment 2 weeks after my discharge from hospital.
My case had to be discussed with the multi disciplinary team first.
My situation was that I had ER positive lobular cancer in the left breast sized 5.5 cm with nothing in the lymph nodes.
My breast cancer surgeon told me at that meeting that he got all the cancer , it had not spread to my lymph nodes and that I needed to see the oncologist about whether chemo was recommended and the radiation oncologist about whether radiotherapy was recommended.
I saw the oncologist and radiation oncologist within another 2 weeks.
I was recommended to have radiotherapy but not chemotherapy and also recommended Letrazole for at least 5 years) .
I couldn’t start the radiotherapy for another 4 weeks after I saw the radiation oncologist mainly as I couldn’t fully raise my left arm after the surgery.She was not concerned about that delay.
I started the hormone therapy after I finished radiotherapy ( 5 weeks ).
Try and keep busy in the lead up to your appointment and meditation is great - I went back to it after my diagnosis after taking it up some years before.

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12 days since lumpectomy and still no results

17 Replies

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