Well, after reading a lot of posts on this site, I am starting to lean towards going with the DIEP Reconstruction. I was thinking this is not the way to go for me last week .. but now Im starting to think the cost and additional operations is not in my best interest to move ahead. I guess the bonus is I get a tummy tuck out of it (very much needed and lots to spare fat) and the reconstruction of my abdominal Hysterectomy scar and 2 C-Section scares will turn it into one scar which I would be happy with. I also get a "normal" boob out of it and not a plastic one. I think I need to do some serious consideration before Tuesday and seeing the Plastic Surgeon and also some googling to make sure this is the right thing for me.

Hi, It has been 4 years and 8 months since my last post. I have been reading back over this chat and wow how that time changed my life and everything around cancer. So on July 28th, I went to Auburn Hospital for my operation under Dr ****. 4 hours into the operation she was notified that I had 44% cancer cells in my Sentinal Node so other nodes were advised to be removed. 23 nodes later,,, gone. This then brought my operation up to 6 hours. Recovery went fairly well. I was able to go back to work 2 weeks post op and did light duties and haven't stopped. Unfortunately, at pre-op there was no indication that I had an aggressive form of cancer so I had to undergo chemo, which was not discussed previously, only Radiotherapy treatment for 6 weeks. So fast forward to September 16 and I am going in for a Port a Cath insertion at Prince of Wales as there was nowhere doing them at the time I needed to start chemo. I had the first 3 lots of aggressive chemo and said no more. I was still working and no quite sure how I go through all of that but obliviously I did. I then went onto 3 more doses of chemo and again said no more. I never wanted chemo in the first place and should of stood my ground but I listened to the Dr's as it was routine, well routine is not always right for everyone. Radiotherapy was also dropped to 16 days with 10 shots per visit, so 160 doses.. and yeah the boob is now fried and wont move..although it is getting softer to touch. So from Jan 2017 - Oct 2019 I got on with living. I ended up with Lymphoedema in the left arm,, not good but I have a great network with the Lympho Therapist and sleeves. I was going really well, working, riding my motorbike and just getting on with things. In July 2019 I got a very sore left knee, thinking it was just arthritis I let it go for about 10 weeks. When the pain became so bad I went to a new GP who sent me for ultrasounds.... nothing other than OA. Ok, so lets do a bone scan just to have a look and see. Scan was done on a Monday, results were to be picked up on a Wednesday. We didn't find the answer to the pain in the knee, although there was OA but they did find 5 lesions in my bones. 1 in the skull, L1, L2, L3,L5. no symptoms at all. Ok, so where to from here. A new Oncologist (the last one and I did not Gel). New medications, Immunotherapy meds. Palbociclib 125mg and Arimidex 1mg. Three months later I had another bone scan to see how it was all going. Damn again, another 7 lesions. T11, S1, L4, Hip and Socket joints, and hip area. So all up 12 lesions. They did a biopsy on the S1 and I would not wish that on my worst enemy, it bloody well nearly killed me. The results came back as the same Breast ca as before so this was treatable. During this time in Oct 2019, I became a Nanny to my little man Archie.. I am so in LOVE. Fast forward again to 2021. A few more bone scans every 6 months, blood tests every month for ca markers, 21 days of Palbociclib, and daily for Arimidex. I am now 18 months into this next journey with Stage 4 Metastatic Breast Cancer. I still work as a Clinical Facilitator for Universities looking after RN Students, although I feel tired all the time. I still ride my motorbike, hubby and I brought a Motorhome to start going away,. In 2018 I did a Cert IV in Celebrancy and became a Marriage Celebrant in March 2019 and I am about to go down the pathway of learning how to be a Funeral Planner/Director. I am currently a Funeral Celebrant. This is my business and I love what I do. I am also a Justice of the Peace now. So yes life is somewhat busy.... hahahaha... well totally busy but I love it and it will keep going as long as I can keep going. I am in the process (slowly) of planning my own funeral. It is not morbid, it is reality and I want to go out the way I want. My family will just follow my lead and plans. All going well, I hope to have a pre Funeral party and have all my friends and family there to see me before I kick the bucket, but I am also very much aware of living while I can. www.lovelisallaroundus.com.auThis is my website and it means I get to share my love, friendship and hope with everyone.

I originally wanted this 1st up with my bilateral and reconstruction surgery .. but my breast surgeon advised me that it might delay my treatment whilst I got a date snd suitably qualified plastic surgeon for this. So I opted for the quicker option of teardop tissue expander and quite happy with the result even though not quite finished done by my breadt surgeon . The changeover will occur after chemo fibushef. I decided if need be I can do a diep later when the implants need changing over. Be aware that diep flaps often still need adjustment surgery...so it probably still is more than just one. Sorry about that info. It's all very confusing. I am unsure also if they do them prior lump removal and sentinsl node biopsy...in case you need radiotherapy as that would compromise the new graft. You can have a tissue expander inserted and inflated pre radiotherapy though. It's so hard to know the right choice...many questions for your Dr appt. Next week. Kath

Hi KathyJane This is Kathy from BCNA's Policy team. I see from your post that you are thinking about breast reconstruction and are going to do some googling before your appointment tomorrow with the surgeon. Can I recommend to you the Cancer Australia breast reconstruction website and the Reclaim Your Curves website. Both have a lot of useful information and photos showing the outcomes of different types of reconstruction. The surgeon will be able to talk to you about the best options for you. Not all types of reconstruction suit all women. I'd suggest you write down any questions you want to ask so you don't forget them, including asking for a quote and to see photos of some of the reconstructions he/she has done. If you're still unsure after your appointment, you can seek a second opinion with another surgeon. Your breast care nurse may also be a good person to talk to. Best wishes Kathy

hi and thank you to both of you for your comments. I had a really bad day yesterday .. emotional, overwhelming and every other emotion to go with it. I had the Midwifery Interview yesterday morning and this starts next Feb 2017 but as my head and thoughts were not really together I just hope I did ok to get me through. That is where everything after that changed. I have cancelled the plastics appointment for this afternoon. I was advised that this Dr did not do the DIEP and the only Dr who does it is in Sydney CBD and I might not get in soon so my Mastectomy would be put back ... not wanting that. I am not going to have the expander put in either. Financially this will literally break me as I will have to pay each week to have the expander filled and at $165 per visit that is not feasible for me. I have spoken to my MBCN and she advised me to go back to step one and get the mastectomy but wait till my healing is done then consider reconstruction as she said.. "if I did happen to get an infection" not that I think it will happen but it might.. I would lose the expander and be back to square one again. So im going to do that. I have also asked to see a Councillor as I have been trying to do all this on my own and not sure of my feelings at this time. I cant think straight and every waking minute it is in my head. It is driving me nuts. Since making the decision yesterday, my Surgeon now wants to see me tomorrow morning and put the papers in for my op on July 25th. Looks like it is all go now. From May 30th to July 25th will be 8 weeks since this horrid journey begun ... and not knowing where the journey will take me is the unnerving part. There better be a rainbow at the end of this Journey.

I am sorry for your stress and we all second guess ourselves in our decidions. Do remember you can have either reconstruction done later through the public health system at no cost and they are very experienced Drs. You do not have to pay privately to have a good job. Mine was done through it and I am more than happy. You will feel a lot better once initial surgery done and you have a treatment plan in place. Take care.

MAKING A DECISION | BCNA Online Network

Tracey96
Member
4 years ago
Omg you amaze me so open and honest. I hope all is well with you. U had breast cancer in 2012 n never considered reconstruction til year 3 or 4 after my recovery n clearance. But it's now 2021 and U haven't had it done. Purely because I live on a remote island Norfolk Island and travel to Australia is too expensive too costly having to time off work too with all doctors visits etc etc so I opted not to do it. I have regrets now and then but overall I'm okay with one breast. My health is good no ongoing issues.
Wish you all best ahead .. xo 🥰🌈🙏💓
Kathyjane
Member
5 years ago
Hi, It has been 4 years and 8 months since my last post.

I have been reading back over this chat and wow how that time changed my life and everything around cancer.

So on July 28th, I went to Auburn Hospital for my operation under Dr ****. 4 hours into the operation she was notified that I had 44% cancer cells in my Sentinal Node so other nodes were advised to be removed. 23 nodes later,,, gone. This then brought my operation up to 6 hours. Recovery went fairly well.

I was able to go back to work 2 weeks post op and did light duties and haven't stopped.

Unfortunately, at pre-op there was no indication that I had an aggressive form of cancer so I had to undergo chemo, which was not discussed previously, only Radiotherapy treatment for 6 weeks. So fast forward to September 16 and I am going in for a Port a Cath insertion at Prince of Wales as there was nowhere doing them at the time I needed to start chemo.

I had the first 3 lots of aggressive chemo and said no more. I was still working and no quite sure how I go through all of that but obliviously I did. I then went onto 3 more doses of chemo and again said no more. I never wanted chemo in the first place and should of stood my ground but I listened to the Dr's as it was routine, well routine is not always right for everyone. Radiotherapy was also dropped to 16 days with 10 shots per visit, so 160 doses.. and yeah the boob is now fried and wont move..although it is getting softer to touch.

So from Jan 2017 - Oct 2019 I got on with living. I ended up with Lymphoedema in the left arm,, not good but I have a great network with the Lympho Therapist and sleeves. I was going really well, working, riding my motorbike and just getting on with things.

In July 2019 I got a very sore left knee, thinking it was just arthritis I let it go for about 10 weeks. When the pain became so bad I went to a new GP who sent me for ultrasounds.... nothing other than OA. Ok, so lets do a bone scan just to have a look and see.

Scan was done on a Monday, results were to be picked up on a Wednesday. We didn't find the answer to the pain in the knee, although there was OA but they did find 5 lesions in my bones. 1 in the skull, L1, L2, L3,L5. no symptoms at all.
Ok, so where to from here. A new Oncologist (the last one and I did not Gel). New medications, Immunotherapy meds. Palbociclib 125mg and Arimidex 1mg. Three months later I had another bone scan to see how it was all going. Damn again, another 7 lesions. T11, S1, L4, Hip and Socket joints, and hip area. So all up 12 lesions. They did a biopsy on the S1 and I would not wish that on my worst enemy, it bloody well nearly killed me. The results came back as the same Breast ca as before so this was treatable.

During this time in Oct 2019, I became a Nanny to my little man Archie.. I am so in LOVE.

Fast forward again to 2021. A few more bone scans every 6 months, blood tests every month for ca markers, 21 days of Palbociclib, and daily for Arimidex. I am now 18 months into this next journey with Stage 4 Metastatic Breast Cancer.
I still work as a Clinical Facilitator for Universities looking after RN Students, although I feel tired all the time. I still ride my motorbike, hubby and I brought a Motorhome to start going away,.

In 2018 I did a Cert IV in Celebrancy and became a Marriage Celebrant in March 2019 and I am about to go down the pathway of learning how to be a Funeral Planner/Director. I am currently a Funeral Celebrant. This is my business and I love what I do. I am also a Justice of the Peace now. So yes life is somewhat busy.... hahahaha... well totally busy but I love it and it will keep going as long as I can keep going.

I am in the process (slowly) of planning my own funeral. It is not morbid, it is reality and I want to go out the way I want. My family will just follow my lead and plans. All going well, I hope to have a pre Funeral party and have all my friends and family there to see me before I kick the bucket, but I am also very much aware of living while I can.

www.lovelisallaroundus.com.au
This is my website and it means I get to share my love, friendship and hope with everyone.
primek
Member
9 years ago
I hope things fall in place. It does get better. Believe me. Kath x
Kathyjane
Member
9 years ago
thanks for the thoughts ... I have mental fatigue now ... but I cant imagine when i get worst..

I still need to hear from the Councillor as she has not been in touch yet.

Your op was what I was I was going to have but financially it was not viable at this time...
primek
Member
9 years ago
Goodluck with the appointment and hope you have a plan soon. Mental fatigue is real. Know we are thinking of you. Kath x
iserbrown
Member
9 years ago
Hi Kathy Jane - good to hear you are in touch with a Counsellor and the Breast Care Nurse.

I had a left breast mastectomy with immediate reconstruction - woke with expander in and in the ensuing months went through fill ups and eventual changeover surgery. I had clear margins and he took the sentinel node and two others.

Be kind to yourself as this is a very tiring journey and the fatigue can take it's toll if you don't pace yourself accordingly.

Take care
Kathyjane
Member
9 years ago
Hi Christine,,

Yes it is all over whelming .. I now have a second consult on Monday with a Dr Lucia Saliba. I was given her details from an awesome person on here.. I have seen my other Surgeon today and I have the paperwork to go into Bankstown on Monday after i see this other Dr if she is unable to do the Recon straight away. If it isnt done then I will have to go with a straight Mastectomy and then look at recon later down the track. (dont really want that) .. I also contacted my Breast care nurse on Monday and spoke to her... and she is getting me in touch with the Councillor from Campbelltown Cancer Therapy Centre. ... Im still working and I have to say I am so very tired ..

Tonight I came home at 10.30pm and cut my hair and am now sitting her with a colour in and will hopefully reboot my feelings ..
iserbrown
Member
9 years ago
Hi Kathy Jane - I feel your pain, driving you nuts! It is a huge decision and you say hang on how did I get into this predicament.

Just wanted to wish you well with your appointment tomorrow. Be confident in your questions, write oodles down and cross them off as you go! Good idea to seek out a counsellor and hopefully a breast care nurse so that you can give yourself some peace of mind in what is happening is the best for you.

All our journeys are unique and we have good medical teams out there looking after us and you have this forum to help fill in some of the gaps

Take care

Christine xx
primek
Member
9 years ago
Reduction is also BTW so if needing adjustment to your other breast that is not an issue either. Best of luck. Kath x
primek
Member
9 years ago
Reconstruction is covered by medicare. What you are paying for with a private Dr is the gap between private health and what they charge. My reconstruction cost zilch through the public health system (and these Drs also work privately). I wanted to be under the public health team approach.