Newly diagnosed; Treatment order advice

Spillsy

i have seen my surgeon yesterday, apparently I have to have all three; surgery, chemo and radio; it’s just the Order....
i can have chemo first to try to shrink very large tumour then surgery, as if I have surgery first it has to be a masectomy; then whether I want reconstructionnat the same time; how do you work out which way to go.... he said survival rates are the same, so it’s up to me... I have no idea how to make that choice.

SoldierCrab

@Spillsy
Hello welcome the forum it is not somewhere any of us chose to be without this diagnosis. 

I had a double mastectomy with no reconstruction, my choice I could of had a single.
5 years ago they did surgery then chemo then rads now they do it either way.
Others will give you a few suggestions ... 

DO you have a My Journey Kit https//www.bcna.org.au/resources/
Do you have a breast Care Nurse? https//www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx

I was 52 went through surgery then  9 months of chemo then 6 weeks of Radiation I am now 5 years out and cancer free. 
Hugs 
Soldiercrab

smokie08

Hi spillsy I  had chemo first to shrink the tumor  then lumpecomy now on rads. They did say about mastecomy but as it shunk so much did the  breast conserving surgery instead . As soldiercrab said  others will give you a few suggestions. It's a lot to think about but I am sure you will make the right decision for you.  Take care

Spillsy

Thanks to you both, I am still a bit blown away really, I am 45, and have had regular mammograms since 40, found a sort of lump, but didn’t really think it could be BC, went to drs then off to mammogram 5-6cm lump! Don’t know how that was hiding in there.
i am having scans tomorrow then off to see surgeon on Friday, and oncologist, I can not believe how many medical appointments/ tests/ people I have seen in two weeks....hope I get through. 

Sunshine0206

Hi there
I had a tumour similar size to your own. I went with double mastectomy (my choice). I’m 41. I’m not interested in reconstruction.

good luck with your decision.
x

Spillsy

Thanks, did you have cancer in the other breast? 

onemargie

Hi there @Spillsy I had triple neg last year aged 43 in left boob. No lymph nodes involved all scans clear Took it off so I only had to have chemo (8 rounds)  and not rads  as well chemo was enough for me that’s for sure and then took the other cancer free boob off 6 months later as my gut told me too no regrets from me either and I finished chemo oct last year and I’m fit and well and healthy. It’s a big decision to make and only one that you can make but if you want my advice it’s this......  trust in your team but also trust in yourself and what you’re gut instinct tells you that’s right for you too. I was told it’s not necessary to take the other boob off but I did it anyway as I felt that it was right for me. I’m on the very bloody long wait list for recon in qld so will cross that bridge when I eventually get there too hopes this helps. Margie  xx

Afraser

It's a really personal decision but I agree with @onemargie, you need to listen carefully to the medical advice as every case is different.  I had hormone positive cancer, a mastectomy and axillary clearance. I could have had a partial mastectomy but couldn't see the advantage in saving just part of a breast, and my surgeon did feel that a mastectomy was a safer option, given my particular diagnosis. I have consulted with both my surgeon and my oncologist about any advantages in a further preventative mastectomy. Both can't see any particular advantage. I have no family history of cancer let alone breast cancer, I haven't a particularly worrisome gene,, the hormone positive was in one lymph node only (the ony affected lymph node) not the primary tumour. I also had a  lot of problems with a seroma and could reasonably have the same again. Statistically I am more likely to get cancer again in another part of my body than in my right breast. Five years on and clear to date. But it's really horses for courses. The otehr factor is your own emotional feeling - if you feel you will be perpetually worried, that's something to take seriously. But when in doubt you may wish to take one step at a time. Deal with the current problem first. You can make other decisions later. Best wishes.

primek

I could've had a lumpectomy but as I have very dense breasts my cancer was invisible on a breast MRI 5 weeks before I felt a lump. I had an aggressive tumour and opted on mastectomy and was hoping to skip radiotherapy should nodes be clear...they were. After mapping my family history and reviewing my scans etc and my discussion that I would like reconstruction and preferably immediate my surgeon suggested a bilateral mastectomy...reduction and immediate tissue expanders inserted with a matrix sling so they were 3/4 inflated. They remained during my remainder treatment without beibg touched then changeover surery was later. 

All very personal choices. I miss my breasts but never regretted my decision. 

TonyaM

Hi Spillsy, all these decisions can be so overwhelming. You are on a steep learning curve and rely on your team for info.Normally your specialists will advise you but sometimes they leave choices up to you and that makes it harder. You need to ask lots of questions before you can make a comfortable choice
It’s all very well to say survival rates are the same but  you need to ask what are the chances of cancer coming back in the same breast after a lumpectomy.In my case, cancer back 7 years later in the same breast despite clear margins and radiation and it wasn’t considered aggressive! I had to go through the whole crap journey again and because of previous radiation,I have limited recon options.I would also ask ‘how will your breast be monitored if you have chemo first and if cancer is not shrinking will you change chemo and have to start again?’ 
I had to have a mastectomy and now I’m lopsided but I’m used to it now.I’ve been clear for another 7 years (14yrs in total).You don’t have to rush recon- it can be done years later.When you have all your questions answered,go with your gut feeling.Keep coming back to this network if you need to ask questions or get support.You are at the anxious/scary bit but once you have a plan in place you’ll hopefully feel a little calmer.

Sunshine0206

@Spillsy - no it was purely my choice. I had large breasts so was worried about prosthesis matching etc plus I’m the kind to be fixated on the remaining breast. I would have been always worrying. 

good luck.
x

Mollygirl

Hi @Spillsy , I know your brain is racing right now and you are anxious to make 'the right' choice. It's hard. But doable. Do you have a breast care nurse you can talk all this through with?  I guess if you start with chemo you have time to really think about your surgical options. But you know even if you do surgery/lumpectomy first you can opt for more (mastectomy) later if you want. Your tumour is quite large so you may want to consider how your breast will look after a lumpectomy and how you will deal with that. 
My tumour was small but triple negative and a grade 3. I had a lumpectomy and nodes out to start with. Then chemo. Then last month bilateral mastectomies no reconstruction. I don't intend to have reconstruction. I'm 47. 
I kniw its overwhelming right now. There is no right or wrong decision but you know sometimes having the time to consider mastectomy is good as it is a BIG decision. Trust your instincts too I guess. Hugs to you xxxxooo