new and in need of advice...please x

heidi · 04-02-2010, 09:25 AM

HI all..I am new to this site. I am 24 and have multiple her2+ breast cancer in left breast. I am due my 3rd fec on the 6th April and then start the herceptin, then mastectomy, more herceptin and radiotherapy.. I am considering a double mastectomy as a preventative? is this a good idea? does anyone have experience of this?
I havnt spoke to anyone about this really and know of knowone apart fromt he nurses who even know what her2+ means..and could really do with some advice please.. any input would be much appreciated xx

felicia · 04-02-2010, 09:42 AM

Better ask a doctor what are the advantages and disadvantages. I never even thought I do a double mastectomy. It was quite painful even just one breast. In both would have been twice painful. On the other hand, my right hand does not have the same mobility as the other after surgery.
All the best,
Felicia

whatz · 04-02-2010, 10:27 AM

Hi Heidi,
Hate you have to join this board but welcome anyhow. Not sure about giving you advise on this. I don't think there is a right/wrong answer and it depends on the individual. My cancer was only in one breast and I opted for masectomy only on that side. Based on my oncologists input the masectomy reduced my chance of recurrence but did not eliminate it, since there is still a little bit of tissue left. That said...I sometimes wonder if I should have done both. A masectomy will leave you with some numbness on the affected surgery side, so that's to be considered. Do you want that on both sides even if one is not affected? On the cosmetic upside for a double masectomy (should you opt for that) you can make both sides match.

Barbara2 · 04-02-2010, 11:48 AM

Go to "Seach this Forum" and type in what you are searching for and you will find other ladies who have discussed this topic, too. Here are a couple:

http://her2support.org/vbulletin/sho...ble+mastectomy

http://her2support.org/vbulletin/sho...ble+mastectomy

http://her2support.org/vbulletin/sho...ble+mastectomy

Lien · 04-02-2010, 03:24 PM

Hello Heidi,
I'm sorry you need us, but glad you found us. I hope we will be able to give you the support you need right now.

You are very young for a breastcancer patient, and this makes me wonder if you are perhaps BRCA positive, which means that you care a gene that makes you more susceptible to developing breastcancer. Has your doctor said anything about that? Because if this is the case, it might indeed be a good idea to have a prophylactic mastectomy on the right side.

It's impossible for us to tell you what to do. We are not doctors and all we can do is tell you about what we have heard and what we have read.

I hope you can talk to your doctor about this. Have you tried that? Have you asked a good explanation of your pathology report, of the tests that have been done and have you talked about your prognosis? I think you need more information before you can make a decision about this.

Hang in there! Things will get better, eventually!

Hugs

Jacqueline

Shobha · 04-02-2010, 04:17 PM

Hi Heidi,

In my case, even though cancer was only on my left side, I decided on a double mastectomy for peace of mind. I have been fortunate so far with almost no issues after the surgery.

As Lien pointed, BRCA test would be an important factor in your decision making.

Take care,
shobha

BonnieR · 04-02-2010, 08:00 PM

Heidi, I see you have 2 threads going here. It might be best to consolidate so there is continuity. I replied on the other one earlier.
As has been said, this is a big decision and requires you to be armed with all of your pathology reports, second opinions, consultations. Be sure to have your questions (and the answers!) written down. Keep records of everything. Most hospitals have "tumor boards" where your case is presented to a group of doctors who discuss treatment options and recommendations. It is a decision only you can make once you have all the facts but alot of people will give input so you can be informed.
I opted for a double mastectomy but am ALOT older than you and had a suspicious area in the other breast (it was benign). I do not regret the decision but I miss the breast!
Keep the faith. We will support you.
It would help if you put your stats in your signature.