Decisions

Hiya Maz a mataz, you must be feeling overwhelmed right now after an appointment like that. Sometimes a Breast care nurse can fill in the gaps to help negotiate what you can do in your circumstances.

You mentioned that you are in the public system and would need to wait for reconstruction. My story is a bit like yours, lumpectomy did not achieve clear margins, so i decided to have a bilat mast and immediate reconstruction. i was not comfortable living with no breasts, and because the margins were not clear I was eligible to have a mastectomy with immediate recon, no waiting. No radiation.

From what you are saying, it sounds like they agree with you to have the mast, but want to delay recon due to radiation????? Radiation can have poor effects on reconstruction. However, my understanding is that you can have expanders placed at the mastectomy time, then have radiation and allow time for healing prior to having your final implants exchanged. Also, delayed reconstructions can look great as your body is well healed and mentally better prepared.

As far as having 7 operations related to reconstruction and the life long committment, it sounds like your surgeon is not keen on the reconstruction process. Is this a plastic surgeon???? breast surgeons are ofton more keen on breast conserving surgery. If you havenet seen a plastic surgeon, it would be a good idea to see one before making a decision about reconstruction. A plastic surgeon will be able to talk about other reconstruction procedures you might be eligable for also. I saw several plastics surgeons before making my choice, they seem to specialise in particular procedures.

The number of operations is a personal thing. Personally i have had 2 breast conserving surgeries (lumpectomy then re excsision), 1 mastectomy/ recon and 1 revision. It is normal to have revision surgery after reconstruction. I will be having a second revision then nipples. BUT I could have elected to have no revisions and no nipples. With implant reconstruction, it is normal to have at least 2, one for the expander, then one for exchange, then nipples. It really varies depending on you and your body. There are also some circumstances where a one step implant procedure can work. This is where there is no expander. So many options.

There is a private group here on BCNA dedicated to reconstruction you could join to chat to other ladies and see their pictures. Click on the link and request membership if you want to join. http://www.bcna.org.au/group/61026

I hope i haven't confused you, but I recall I wanted every piece of info i could get when at your stage. Take care, XXXLouie

Hi ladies,

thankyou for all your comments I had my appointment with my surgeon yesterday, had a few srestless nights leading up to it.

I got my results from my MRI and the tumour is now 1.5cm instead of over 4cm which is great as the chemo responded well.

My surgeon is highly recommending to me that I have a lumpectomy and I also need to have my lymph nodes removed under my right arm.

He said the chances of getting the tumour back with the lumpectomy is 10-15% which freaks me out a bit, not to mention that there is a 20% chance they may not have cleared all the margins and taken it all out in the first session of surgery.

We talked about having a double mastectomy and reconstruction and he said that it isnt neccessary to be so drastic and that they can remove both breasts but I still need to have 5-6 weeks of radiation, the catch with this as I have gone through the public health system I would have to wait 6 months to year to have reconstruction as I would be put on a waiting list.Even with a mastectomy there is a 1-2% chacne of getting it again.

I feel like going  with what the surgeon has recommended as he was quiet confident about it, I dont think I could handle not having reconstruction straight away and waiting 6months plus for reconstruction he said that reconstruction isnt a one operation process its a commitment for the rest of your life, I would be looking at about 7 operations. Can anyone give me an insight on the reconstruction process?, is it not a matter of placing the implant in and later down the track having nipples inserted and then tattooing?

I have also been told that two weeks after I have the lumpectomy and remove my lymph nodes i will receive the results if its all been taken out and whether there were any lymph nodes that were cancerous. If the margin isnt clear and they need to operate again I can have a mastectomy and reconstruction done on the same day as long as there are less then 4 lymph nodes that are cancerous.

Is anyone going through anything similar to what I am, is this about the norm to what most surgeons have said?

also can anyone give me an insight on lymphodemia as I have a physio appointment next week to show me exercises to do to prevent lymphodemia has anyone had any bad reactions to having there lymph nodes removed?

Has anyone had a lumpectomy and found it came back?

thankyou for all your support, you all have been my strength through this journey even though I am not online alot I feel at ease discussing these matters with others who are going through it as you understand better then anyone else.

Hi Michelle,

 

thanks for your message, you have helped ease my mind and thankyou for the great advice

mazamataz

Hi Janey,

thankyou soo much for your message I spoke to my surgeon and they said to me that having either a lumpectamy or a mastectamy will end up with the same result and I would be better off having a the lumpectamy, so thats what I am thinking off doing but to be honest when I first found out I was thinking to myself get rid of them both but the surgeon said there can still be a chance you can get it back even with having both breasts removed.

I am going to trust in what the surgeon as he should know best.

Its so true the qoute you mentioned I didnt think I would be as strong as I am but when your put in these situations you ahve no other choice then to toughen up!

 

mazamataz

I hope Christine and Michelle have been able to ease your fears a bit. We all know exactly what you are feeling even though, as Michelle says each of our journeys are unique, we have a common bond. After my lumpectomy, my surgeon advised me to have chemo and then a mastectomy of my left breast. I was petrified and thought my world had come to an end. I then had to grapple with myself about whether to have my right healthy breast off as well. I struggled all through the fog of chemo but finally came to the conclusion that if I didn't have the other breast off, I'd be worrying for the rest of my life about BC in my right breast. Not that there won't be niggling worries from time to time about cancer but I think that's only natural. This quote is one of my mantras that helped me through my journey and I hope you like it too. "YOU NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS THE ONLY CHOICE YOU HAVE" Bob Marley. You've gotten through your chemo and I know that you'll do just fine with surgery and radiotherapy as well. It's okay to have down times as without them how would we know what are the good times :) I'm sending you hugs and wishing you the best with your decisions. Trust in yourself. Love Janey xxx

Yes! I agree with everything Christine said.  Of course it's frightening to go through all this, we are only human and it's all overwhelming at times.  I have no regrets whatsoever about having a mastectomy, it was the right thing for me.  When I found decision making just so difficult I decided to trust the process and the medical knowledge and expertise offered - after doing my own research as well, and just went with it.  I haven't had pain, have full use of arms shoulders, chose not to have a reconstruction, am back at work - the day b4 my 6 weeks post op was up.  Your journey is unique, it has to be your journey, but you will get through it all and come out the other side and have your own story to tell.  Let your body and mind take the time it needs to clear the fog and write questions down as soon as they occur to you, because it's hard to remember later.  I found the breast care nurse a great support too.  Hang in there, and keep in touch on the blog.

Sending a hug lots of positive vibes xx Michelle Ma Belle

 

Hi ladies just feeling a bit down atm and am needing some advice i recently had my last round of chemo on new years eve and am not feeling the best clouded mind etc has anyone had chemo first then surgery followed by radiotherapy then perception till September this is Wat I've been advised to do after the third session of chemo the lump had shrunk down to half the size im so petrified of having surgery as I've never had an operation my minds allowed the place i just want this to be over and done with im breaking out it Will come back again i don't think i could bare going through this again. Are the chances of getting breast cancer again high im 29

Yes I did look at the yesyesyes.org website so I'll order it from there. You're right about GPs. Mine is a women and ever she is quite reluctant to talk about sex related problems. I attended a BCNA 'Feeling Well Beyond Breast Cancer' forum last Thursday which was really great but they didn't discuss much about sexuality and relationships as they ran out of time. This is quite a problem for me right now as the act itself is extremely painful and I feared that it will never be the same. But after reading the testimonials on YES I'm quite excited to give it a try. So thanks again Christine Cheers Janey xxx

Hi Robyn, 

Yes It's great that we have the blog and mutual support from so many women.  I have spoken to my GP about the tablet and other women affected by bc and it seems most are pretty positive scenarios which gives me hope.  I was given the drug information sheet , along with the tablets, which listed the side effects you might reasonably notice immediately, after a few weeks to months, and longer term.  Although I really hate taking the drug I'm just going to stay upbeat and give it a go.  Your comment about taking it for a couple of years instead of the whole 5 years and maybe beyond, in order to reduce the chances of uterine cancer, really helped me to take the plunge and get on with it.  Guess the saying is true - we can only eat an elephant one bite at the time.   Best of luck to you for your treatment!  Cheers to you too,  Michelle.

I am going to order some YES and give that a go. Where do you order yours?

Anything is worth a try.

Thanks again

Janey xxx