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Hi @Judithm the initial decision making process I found to be just so overwhelming.  I had a mastectomy last November for DCIS and small tumor - very low grade so no chemo required thank goodness.  I didn't have reconstruction at the time but now regret that, everything was so full on and rushed and my surgeon sort of talked me out of it.  Life now as a mono-boobed lady is ok but as someone said on the forum in the last few days the scar is like a constant daily reminder that I had breast cancer.  Now to go back and have reco - I would like to go with a DIEP reco has quite a few issues - it's another big surgery, time of work and recovery and the cost (my surgeon said it would cost between $5-$10k out of pocket).  It's such a big decision to make and I think the affect that it has on you mentally is so underestimated until after the event.  At the end of the day it is your body and you have to decide how you want to look and feel.  good luck xx

Good morning,
Since the very helpful responses from all, I've been back to the radiation oncologist.  The 16 treatments will be at a higher dose but apparently this allows the area to be more specifically targeted.  I do qualify for the prone position. 

The target breast has reduced in size since the lumpectomy - now a 12D.  I was told my lymph nodes would be untouched...
I see the breast specialist again next week and I'll ask for a copy of the report from the radiation oncologist. 

I now ask for and keep copies of every report from everyone.  After the 2nd opinions from all specialities giving me quite different and at times conflicting opinions, I personally feel the need to read everything and have everything explained in detail to me.

I'm still agonising over the choice I have to make - radiation or skin, nipple preserving mastectomy with immediate reconstruction.

I would dearly love to hear from women who've had to make this choice, what they decided and how they feel post the decision and surgery/treatment.  

From a cost perspective for either choice, (I'm a private patient): 

I've reached the medicare safety net already, radiation will still cost $3300 after all medicare rebates are paid to the Clinic here in Brisbane.  There may be some negotiation on this for those who need the treatment but can't afford this.  I have been offered some concession re fees and am thankful for it.  It's been an expensive year!!!

Ironically, after all medicare and private health fund rebates, including hospital stay, theatre fees etc, all the doctors involved, the mastectomy/reconstruction cost would be less than $1500
Go figure.....this seems crazy to me.

Best wishes and thoughts to all who visit this site xx

Hi @Judithm how frustrating for you that you are getting conflicting advice! In regards to the radiation doses and position there are a number of factors that could influence it. The traditional dose is 50Gy in 25 treatments to the whole breast with a further 10Gy in 5 treatments to the lumpsite (not always given) the newer protocol is 42.66Gy in 16 treatments with another 4 treatments to the lumpsite. The 2nd dose regime as mentioned above gives a bigger dose each day. The size of the patient is a limiting factor as the higher dose per day will give worse side effects for larger patients. Also if you are getting your axilla or supraclavicular nodes treated they tend to stick to the longer 25 treatments. I think you said you were right sided which would mean they will be going no where near your heart. The prone position where you lie on your belly with your affected breast falling away is great for large pendulous breasts (no nodes being treated) where lying on your back would cause major skin folds and hence worse skin reaction. But whichever position and for however many treatments the radiation therapists will develop the optimal plan for you.
Best wishes to you xx

Welcome @judithm I'm sorry that I can't help with your decisions and so hard if you have been given conflicting advice.  Hopefully, some others who have been in similar situations may come on.  I think that you need to think seriously about the pros and cons of each option - not just the immediate but how you think you may feel in the future as a result of each treatment.  Sometimes it becomes clearer if you actually write things down as a list.  As for rads - I believe that the current suggested protocol is for less doses at a higher strength.  What actually happens, depends on the medico/hospital and whether they are open to the change.  I went through the new Royal Adelaide Hospital and had 15 treatments.  I believe under the previous regimen, that would have equated to 25 treatments.  The reasoning is that it has the same effect, is less onerous to the patient and apparently, less impact on the skin.  However, someone else may be able to give you more info @joeyliz?

Gosh!  So many different opinions - and the heart problem thrown in as well!  No wonder you are in a quandary.  

What a bugger that everyone has something different to say.  

I had a lumpectomy, breast conserving surgery with immediate 'tidy up' - and 15 months later, have minimal scarring.  My surgery isolated the nipple & everything was removed (including sentinel nodes) from under the skin & then the skin trimmed & nipple sewn back in place, with some of the excess fat from the breast filling up the hole from the tumour.  

Mine was also the right hand breast.  I had radiation for 4 weeks - 20 in total, with the last 2 being 'boosters'.  I had mine 'prone', so lying face down, which allows them to target the area very specifically, specially if the tumour is close to the nipple.  I never ever thought that I was 'big breasted' - only ever having been a size 34!  However ... I stopped wearing bras decades ago & I guess my boobs 'stretched' a bit (I never had kids!) so suited the prone position.   The prone position also prevents the radiation from affecting the heart & lungs too ..... something I was grateful for. 

I don't envy your choices - hard to understand why everyone has a different opinion. Have they explained WHY each one has that opinion?  Maybe record it & let the other specialist hear it!!  

I hope you have someone with you in these discussions, as they may pick up on a detail that you could miss in the stress of the discussion.  Can you record any discussion for your own record?  I do.

Hi There 
 In my first post earlier today I only told a part of my story. 

I've had the lumpectomy but no sentinel node biopsy.  

But, the tumour was so small they couldn't tell anything more than it was a nuclear high grade malignant carcinoma.  I'm still learning all the letters and numbers beyond that.  
The reason I chose lumpectomy only (sentinel node intact at this moment) is that the initial biopsy showed random high grade cells outside the tumour.  I wanted to know just what it was before I had any other bits removed.

I was very lucky to have clear margins and am most grateful.

Also, I've had conflicting options from 2 different breast specialists.  One said radiation is my only option, as I have a heart abnormality no one would operate on me.   This specialist said emphatically that I didn't qualify for a nipple/skin sparing immediate reconstruction mastectomy either due to breast size.

I checked with the cardiologist who did an angiogram, so I was back in a cath lab theatre 4 weeks after the lumpectomy.
He said I'm ok to proceed with my choice of radiation or mastectomy. 
 
I've also had radiation dye CT scans as there is a small amount of fluid around my heart that is a sign there is a secondary cancer somewhere - not found yet and hopefully never is.  Another dark cloud hovering though and more cardiologist follow ups to come

The second breast specialist said I did qualify for what would be the only type of surgery I would proceed with at this stage - conditional on my heart being ok which it is at the moment.

The past 2 months have been hell.  Cancer,  surgery, cath lab, then finding I had a heart abnormality, then differing opinions from specialist and differing opinions from 2 different radiation oncologists about how many treatments I would have.

At 67 yo with a heart issue that has the possibility of deteriorating over the years ahead,  leaves me with one hell of a choice to make.  Surgery while I can?  The cancer was found on the right side by the way. 
Or radiation.  In my circumstance tram flap surgery, if it was ever needed in the future isn't an option - too long in theatre for my heart.

I'm torn apart with stress over what to do.  Any both my children suffer watching me agonise.  No one can make the decision I know but ...............  xx to all the wonderful women out there going through some form of breast cancer

There certainly is some awesome people on here @Judithm.  

I had 30 sessions. I have no idea what the strength was apart from the fact that the last week was a targetted boost to the scar area.  I was on my back for all of it as my supraclavicular nodes and where the lymph nodes were removed under my are had to be zapped. I am sorry but I don't know about the prone position or why they use it.

thank you for your response. 
Did you have the prone position and how many treatments.  I've had 2 different radiation oncologists tell me a different number.  One said 25 and the other 16.  I didn't think to ask at the time if the amount/strength of each was the same or different.  What a great site this is...So many wonderful women sharing so much thank to to all of you  xx

Hi @Judithm,

It is bloody awful how many decisions you have to make through this when your brain appears to be somewhere else.  My situation was a little different but as I was adamant about having the lumpectomy vs mastectomy  I had to have the radiation.
  I really didn't find rads much of an issue at all. No fatigue, minimal skin problems.
It's almost two years since I finished radiation and the only side effects that are apparent at the moment are a little heat in the area at times and the occasional ache where they nuked my chest nodes. I just have to be a bit careful in the sun.

Good luck with your decision.
xoxoxo

A little more about me - I'm 67yo, reasonably fit, live alone, my only family are my 2 adult children, neither of whom live close by but who are able to take time off work to help me through if I opt for the immediate reconstruction mastectomy.