Bilateral mastectomy

I am really pleased to hear you have such a supportive husband, (me too) and I think that is somehow the most important this, but I understand from personal experience how much one wishes for the supportive family of origin we all deserve and all need in this situation My other siblings in Spain, California and Nowra have surprised me with their sensitive kind comments, so I am pretty lucky.. But I have a sister in NZ who is and always has been an absolute cow. She phoned me at 5.45 am on the day after my surgeons visit (got the time zone wrong) and woke me from the first deep sleep I had had since diagnosis, asked intimate prying questions about exactly what they would be doing to my body, until I told her I really did not find her calls helpful. She then rang me early in the morning at the hospital and thought I would appreciate another chance to talk to her. I hate wasting energy getting upset about her, and wish it didn't bother me.  I have only my husband and adult son and daughter in Western Australia, (plus adopted family) and  I am relying a lot more than I like on my daughter who has been absolutely wonderful, and has been to the depths of hell with me so I was not there alone.

Whatever your distant family is like, it sounds like you havebuilt a good replacement  family of friends who come through for you. It must be really hard with your son: you don't want to frighten him, but you want him to know what is happening. My son is 35 but has suffered badly from anxiety and depression in the past so I was concerned too about how to talk to him about it. I gave him a "good news/best possible" version for a start and then answered all his many questions. I have also got jobs for him to do for me in my recovery/possible, ie taking me to a weekly meditation group and taking me walking. He works nearby, lives abot 15km away, so can drop in after work to take me walking once the heat drops a little. He seeemed really pleased to feel he could do things to help, and maybe your son would like to feel there were things he could do for you.

Knowing you have a big deep DCIS is scary, but deep in terms of doing a good lumpectomy seems to be different to deep in terms of doing a good mastectomy. I understand they need to leave some breast tissue under the incision for a lumpectomy, but take it all out for a mastectomy. So once they can forget about trying to leave you a good-looking breast they can do a much more thorough job of removing all the cancer effectively but still doing a tidy job.

All the best for tomorrow.

Jessica

Hi Jessica,

Thanks for answering my post - even though I am new to this, the amount of support I have already received through here has been amazing!

It has been such a shock - my initial visit to the surgeon seemed so positive. She told me that the tumour was 11mm, had been caught early and that the treament would likely be surgery and 4 weeks of radiation. I naively thought that this would be a quick fix...

After the lumpectomy, the pathology report was 7 pages long - basically, the initial 11mm tumour was actually 28mm, with it missing a section and then growing again to 22mm. She had taken out a 7cm section and still did not have the clearances on the margins. She had taken as much as she could without leaving an ugly, scarred mass for a breast - she recommended mastectomy based upon this, which I was comfortable with.

The left one however, was a real shock. The pre-cancer is so deep that she would never be able to get to it and it would be probable that I would be back in 6 months to have more surgery - she recommended mastectomy for the left, for safety reasons.

This was last Wednesday - the surgery is tomorrow. We have had 5 days to get used to it. My husband is the most beautiful, amazing man and I am so lucky to have him - even in the surgeons office, he told me that he would rather have me here with no breasts, than not have me here at all. We had dinner out last night to "farewell my funbags" and have tried to see the funny side of it (I can jump on a trampoline again, pain free, amongst other things), but it still hurts to think that this has been less than 6 weeks since my first ever mammogram - it is like you fall into a deep hole and cannot climb out...

As for others - I am not close to my family and so we are pretty much on our own. We have friends however who have really stepped up to the plate and that has been wonderful. There have been people though who have said "well, they have served their purpose (as in breastfeeding), so just get them taken off, I know I would"...I'm not so sure that if they were walking in our shoes that their choice would seem so simple...

I know things will be okay, it will just take time. The fact that it is out of my control is something that I am having to get used to as well!

Thanks so much for replying and here's hoping that both of us continue to have a smooth journey without too many bumps in the road!

Karen

Oi, Mel, I live in Ourimbah.........can I come for coffee too????

I too started with a lumpectomy but they did not get it all and was told I could have another lumpectomy of mastectomy. To avoid having to go back and forth I got the mastectomy on one side. Having worn a prosthesis for two years (the time has gone very quickly) I am totaly sick of it. Honestly I did not notice it so much during recovery but now I am better I am ready to have two new boobs as the one I have left is very large so off with it too. They are working on better reconstructions and I am looking into it. Problems from Radiotherapy damage is sometimes the bigger problem.  Talk to your oncologist who should make it clear by presenting you with percentages of benefits from procedures you can choose  then the surgeon. I considered most things that would prolong my life, the quality has not changed much, those who stuck by me I appreciate ten fold those who have not have lost my respect. Just some food for thought. 

Love Chrisy

I too started with a lumpectomy but they did not get it all and was told I could have another lumpectomy of mastectomy. To avoid having to go back and forth I got the mastectomy on one side. Having worn a prosthesis for two years (the time has gone very quickly) I am totaly sick of it. Honestly I did not notice it so much during recovery but now I am better I am ready to have two new boobs as the one I have left is very large so off with it too. They are working on better reconstructions and I am looking into it. Problems from Radiotherapy damage is sometimes the bigger problem.  Talk to your oncologist who should make it clear by presenting you with percentages of benefits from procedures you can choose  then the surgeon. I considered most things that would prolong my life, the quality has not changed much, those who stuck by me I appreciate ten fold those who have not have lost my respect. Just some food for thought. 

Love Chrisy

Karen, our lovely Daina, BCNA online network coordinator has given you some great links especially the last one on the blog, "What has helped you through your journey?"There is also another one which Mich (a wonderful, inspiring woman from WA) posted recently that has brought a lot of us good feelings of hope and I hope it will for you too. It's called "What helps you when you are down or stressed" and here is that link.

http://www.bcna.org.au/user/8430/blog/70425

I hope we having overloaded you with too much information Karen. Please let us know if we can help further.

Janey xxx

Hi Karen,

I am glad you found your way here and it looks like the amazing women who make up the online network are already sharing their experiences and offering you support - I hope this helps to ease your worry!

As Hazel mentioned above, there are some really useful resources on our website. See some links I thought you would find helpful:

• You can download Fact sheets and Booklets from our website including a new resource for Partners - http://www.bcna.org.au/fact-sheets-and-booklets
• I am not sure how old your son is - but it might be worth looking at Canteen's website. They have a specific section for dealing with a parents diagnosis of cancer -- http://www.canteen.org.au/cancer-in-my-family/mum-or-dad-has-cancer/
• If your colleagues or friends have any questions you might find this booklet helpful - http://www.bcna.org.au/new-diagnosis/helping-friend-or-colleague-breast-cancer
• There is also a specific section on our website for surgery - http://www.bcna.org.au/new-diagnosis/treatment/surgery
• This is a blog post I always go back to - I think it has some really practical info straight from those who have been there - 'What has helped you through your journey': http://www.bcna.org.au/user/9176/blog/28978

I could go on, but I don't want to overwhelm you with too much information.

So, when you are really ask as many questions as you like and shout if you need a hand finding your way around.

~Daina