Treatment after surgery

LisaR

Hi everyone,
I have recently had two lots of surgery (first on 11/7) and second surgery on 29/7. I am finding the brain fog a bit of a challenge (which I have been told is due to having two surgeries close together), so can’t really think straight to correctly say the types, however had a different type in each breast. One was a malignant tumor (Hormone positive)and the second (in the other breast) was thought to be benign but ended up being DCIS Grade 3, which is why I had the second surgery to remove more with clear margins.
I am now at the treatment stage of this. I saw an Oncologist on 2/8 - I went in thinking (more likely hoping) that Chemo wouldn’t be necessary but afterwards came to the realisation that I Would have it. The Oncologist gave me a week to think it over and said he would organise a Zoom meeting with himself, myself and the hospital where I would have the Chemo (as I live regionally). This was supposed to happen yesterday and despite me trying to follow up with multiple calls/discussions (and promises for return calls), I heard nothing. I also rang yesterday and was told that the Oncologist would definitely get back to me, and then following up with another call today that went unreturned. 

Sorry for the babble, but what I really want to know is how long people generally have waited after surgery before commencing Chemo, followed by Radiation and Hormone Therapy. Do I need to be more patient…..I just really want to know when Chemo is starting so I can plan things such as work, holiday booked etc. Any feedback would be appreciated, whilst also understanding it is different for everyone!
Thanks so much

cranky_granny

@LisaR. Things seem to drag on this journey I had my treatment in a different order I didn't start Chemotherapy until 3 weeks after seeing my medical oncologist. There was a multidisciplinary team meeting to go over exactly what was the best pathway for my particular breast cancer Then I was given toe advice as to the choice and why. 

There could be several reasons why they haven’t got back to you. It could be a scheduling problem at the hospital you be be attending  also if you scroll down to the groups section there is a link to join living regional just request to join there will be people on there that can fill you in on services available for living regional. And what the wait times for them was like.  It probably wont be actioned till tomorrow though
Im nearly 8 years down the line. I’ve learnt how to be patient but also don't be afraid to ask questions. 

Maybe’s ring the cancer centre where you will be going if you don’t hear back in the morning.
Have you been appointed a breast care nurse, they are very helpful in getting answers as well. 

Also have a listen to Dr Charlotte Tottmans podcast What you don't know until you do there's a link to them on the the home page 
I hope you get your plan soon a week feels like forever    And the waiting messes with heads as well
I hope you have a good support team family or friend that you can trust to have with you at appointments due to the brain fog I often miss bits. If someone doesn’t  attend with me I have someone on speaker phone listening and taking notes and clarifying things. Others have suggested recording the appointment approval is needed of course. 

Keep us updated with how you get on

Mareealso

Hi LisaR, access to relevant staff can sometimes be an issue and can cause delays. I am in the public system and had to utilise a regional hospital for chemo (Echuca) after surgery in Bendigo. My surgery was on Nov 22 and my chemo started Dec 26 2023. I was able to do it at this time line as my scar (mastectomy) had healed sufficiently to allow chemo to commence. If you are slower healing, your chemo may be delayed. Hope this helps to give you some type of baseline..feel free to ask any more questions ..thinking of you..

LisaR

@cranky_granny thanks so much for taking the time to give me all of that information and feedback. I still hadn't heard anything by lunch time today, so got in touch with one of the breast nurses (as you suggested) that I have been connected with whilst in Adelaide for surgery. She is going to follow it up for me. I am so grateful for their support. Thanks again - this is a great forum!

LisaR

@Mareealso thank you very much for the information you gave me. It is good to hear from someone else who lives regionally. I am a good healer, so hopefully that won't hold things up too much for me! 
Thus far all of my surgery etc has been through the Private System and this seems to be the first hold up (I was so lucky with everything else because it was done so quickly), so I was wondering if this is the Public System or just a general thing. I have chosen the public system for Chemo as it is closer to home for me which I think will be better. Thanks again and I hope that you are going well! x

JenD

One day at a time!  Pace youself...its a long haul.  It is definately a learning curve in patience. Things can change depending on how your body reacts /copes with all the treatments.

For info, my timeline has been....diagnosis 22/12/23, grade 3 tumour + lymph node activity. 

Surgery was 28/2/24 (lumpectomy, margins cleared on tumor + dcis found and auxillary clearance...with 15 positive nodes).  Stage 3 local advanced confirmed.  

Chemo started 12/4/24, 4 X dose dense fortnightly Ac (doxorubicin aka red devil, followed by pactlitaxel x 12.  Did number 9 this week of this with 3 to go 👍🏽.  Various side effects being monitored (feet are tingly and numb..neurapathy setting in), and unfortunately a blood clot this week confirmed via ultrasound, so now on thinners), but coping ok.  

I have an appt this week re radiology for timelines and info on this ... upcoming daily for 6 weeks. 

Hormone positive so will be on therapy drugs for ??? years.... still to be discussed. 

Hope this helps give you an idea of time 🙂.
 

Katie46

Hi @LisaR, I did a mix of private for surgery and then into the public system for everything else. We only one option available up here in Darwin, the Alan Walker Cancer Centre, and they have been amazing. My timeline was diagnosis 16/10/23 surgery 9/11/23, chemo started 29/12/23, radiation 17/6/24 (3 weeks) and I'm just starting hormone therapy which will last approximately 10 years. All the best with your journey.

arpie

Hi @LisaR - sorry to see you joining us here, the one group you never thought you'd have to join!  

As you are 'rural/regional', please join our 'rural regional & remote' private group, where we have lots of info re accessing $$ assistance for fuel and/or accommodation - even if staying with friends, you may still be able to claim some $$ (you can in NSW!).
https://onlinenetwork.bcna.org.au/group/28-living-in-regional-rural-and-remote-areas
This sheet shows the SA Patients Travel Scheme on Page 4 ..... (you will have to click 'leave site' to access it ....). It is fairly recent (2023) so should still be accurate.
https://www.ruralhealth.org.au/sites/default/files/publications/pats-fact-sheet-and-guide-2023.pdf

And definitely check out the podcasts by Charlotte Tottman - as she's had a double mastectomy, stayed flat and KNOWS what we've all gone thru!  She was surprised too, the emotions she went thru herself, as they were different from what she'd 'thought they were' when she was counseling women prior to her own diagnosis.  So she 'gets it'.
Go to this link, click on the 'list' (it should show 22 tracks) and start off with No 13 (the first one of Series 1) and work your way thru them.
https://soundcloud.com/search?q=charlotte tottman

Also check out this post for lots of things on the forum you may like to check out ..... you can show us your gardens, art & craft, your fur kids, and there are also 'tick sheets' you can print off & fill in re your mental & physical health as you proceed ... print off 2 copies & give one to your team member as sometimes it is easier to do that than to 'talk' about it!!  
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

take care & all the best xx

LisaR

@JenD thanks so much for providing all of that detail. I have now got my treatment plan with Chemotherapy starting tomorrow (same regime as you, along with Radiation and Hormone Therapy). Glad to hear you coped okay with it. Thanks again - really appreciate you taking the time to share that with me! xx

LisaR

@Katie46 thank you for the info - it is hard waiting but good to hear that it is in line with what others have experienced. Take care x

LisaR

@arpie thank you - all of that information is amazing!! I have started listening to the suggested Podcasts and have found them to be fabulous so far. I will also join the Rural, Regional and Remote Group - I have a lot to learn and am really grateful to be pointed in the right direction. Thanks again xx