Second but not secondary!

Hi Deanne, 

that's okay, I gathered you didn't mean it that way. 

I should point out that because I had caught my cancer early, had 6 nodes removed and didn't need chemo or radio therapy I never considered myself in the same league as others that had. I felt I had cheated to get the result so many are after. A strange way to think I suppose, as my husband pointed out that I still had to go through the same emotions and stress to get to the point where I was clear of BC. 

I wish you well and hope you have a good result real soon. xxx Maria.

I definitely did not mean that comment to come across as it did. But I do think that there needs to be more accurate statistics about people's chance of recurrence or new primary. I think it is great that we share our experiences both on here and with the wider community. My experience is that removing my other breast will unfortunately not change the fact that I have a higher chance of recurrence because my cancer had spread beyond the breast. I find it difficult when people assume that removing my other breast would change this. So like you I am spreading what I have learnt from my experience. Removing both breasts won't guarentee that the cancer will not return. Thank-you for sharing and sorry again for how that comment sounded. Take care. Deanne xxx

It can happen. It is just awful that there are situations where breast cancer recurs or people get a second primary cancer. Just as we never wanted BC in the first place we certainly don't want it ever again. It is such a difficult situation because until they can tell us what causes BC what do we do? We are told (and I do believe this) that MOST people will be treated and never have BC again. But this does not mean that it doesn't happen and if it is going to happen to us of course we would remove our breasts rather than go through the trauma and risks of treatment (even that first time, let alone a repeat some years down the track). But this is drastic action which does have an impact on your health and quality of life (having a single mastectomy has taught me that). If everyone chose this course we would have a lot of people suffering unnecessarily and possibly make it harder to really find out why some people get BC more than once. Even worse, removing both breasts does not guarentee that the cancer will not recur in the small amount of breast tissue remaining or elsewhere in the body. What we need is for the researchers to find more answers about this disease. Finding the BRAC genes at least gives some women more information about their chance of getting BC but there is still so much missing from the picture. It can sometimes feel that there are a lot of ladies on here facing this awful situation of a repeat occurrence (either a recurrence or new primary). But we need to remember that most ladies who are treated don't even find their way to BCNA and hopefully have treatment and go onto live cancer-free lives. I met 2 of them yesterday. 18 years and 20 years free of this disease (both diagnosed in their 40's). This gives me the hope and strength to think that this does happen for most women. Meanwhile, hurry up researchers and find out more so we can make more informed decisions about surgery options or maybe just never get BC in the first place! Wishing you all the best. Take care. Deanne xxx

When I was first diagnosed in 2005, the only information I was given was that as I had small breasts that I may as well have a maestectomy, as there wouldn't be much more than a nipple left anyway. I was given research material to read & what stood out to me was that if the cancer returned after a partial that it was very aggressive and usually fatal. In Nov 2012 I decided to look into reconstruction and Jan 18 2013 I had an expander implanted, insitu of my major pec muscle. While in hospital a Breast Cancer Nurse visited me as she was informed that I had been considering a maestectomy of my healthy breast. She proceeded to tell me that I was being a bit drastic, as I only had a low grade cancer & just cos I had it in one breast didn't mean that I would get it in the other. However when I next saw my Plastic's Doc, he said not to listen to her. That at anytime down the track I had decided to have it off, even if it was years, he would do so for me. The day before I was to have the expander changed over to a silicone implant, I had a mammogram. I asked my Plastic's Doc if the results were ok & while he checked I was wheeled off to anaesthetics. My op was cancelled as calcification was picked up in my results. The next day after more mammograms & ultra sound, they were 99% sure it was benign, as the calcification was the same as in my 2009 scan.....which was not documented. It had disappeared in the following annual mammograms until now. They thought this was because it was right against my chest wall & wasn't picked up. The radiographer shared her experience with me & I learned about a skin sparring maestectomy, which she showed me hers. So that's what I had done & had both silicone implants done at the same time. The Breast Cancer Surgeon came to give me the results.....it wasn't cancer, just a shadow. Now I am NOT telling people what they should do, just sharing my experience. For me in hind sight.....I wish I had had a skin sparring double mastectomy & gone through the expansion of both breasts prior to having the silicone implants in 2006. It would have stopped the annual worry of "what if" with each mammogram & as good as the radiographers and Docs are...they do make mistakes. I have my new nipples & in Nov will have another op to change over my left implant to a smaller one, as the pec muscle pocket that it sits in needs to be made smaller so that the two are more symmetrical. Plus I will be tattooed at the same time. Then all should be done! It has been quite a journey, but I am glad that I have had it done. I hope this helps anyone out there who is searching for answers. My cross over journey is the side effects of takingTamoxifen for 6 years. In the past couple of years I have had 2 curett's (hope the spelling is correct)- during one had pollop's of up to 3cm burnt off (benign)& as I am still having the odd bleed I am having another pelvic ultrasound in a couple weeks time. Pap smear was clear, but just finished a course of antibiotics for an infection that was present. I have asked about a hysterectomy, but was told I was being a bit drastic. I have heard about a procedure where the uterine wall is burnt out, perhaps this could be an option?? If anyone out there has any info that would help, I'd love to hear it. Thanks in advance.

When I was first diagnosed in 2005, the only information I was given was that as I had small breasts that I may as well have a maestectomy, as there wouldn't be much more than a nipple left anyway. I was given research material to read & what stood out to me was that if the cancer returned after a partial that it was very aggressive and usually fatal. In Nov 2012 I decided to look into reconstruction and Jan 18 2013 I had an expander implanted, insitu of my major pec muscle. While in hospital a Breast Cancer Nurse visited me as she was informed that I had been considering a maestectomy of my healthy breast. She proceeded to tell me that I was being a bit drastic, as I only had a low grade cancer & just cos I had it in one breast didn't mean that I would get it in the other. However when I next saw my Plastic's Doc, he said not to listen to her. That at anytime down the track I had decided to have it off, even if it was years, he would do so for me. The day before I was to have the expander changed over to a silicone implant, I had a mammogram. I asked my Plastic's Doc if the results were ok & while he checked I was wheeled off to anaesthetics. My op was cancelled as calcification was picked up in my results. The next day after more mammograms & ultra sound, they were 99% sure it was benign, as the calcification was the same as in my 2009 scan.....which was not documented. It had disappeared in the following annual mammograms until now. They thought this was because it was right against my chest wall & wasn't picked up. The radiographer shared her experience with me & I learned about a skin sparring maestectomy, which she showed me hers. So that's what I had done & had both silicone implants done at the same time. The Breast Cancer Surgeon came to give me the results.....it wasn't cancer, just a shadow. Now I am NOT telling people what they should do, just sharing my experience. For me in hind sight.....I wish I had had a skin sparring double mastectomy & gone through the expansion of both breasts prior to having the silicone implants in 2006. It would have stopped the annual worry of "what if" with each mammogram & as good as the radiographers and Docs are...they do make mistakes. I have my new nipples & in Nov will have another op to change over my left implant to a smaller one, as the pec muscle pocket that it sits in needs to be made smaller so that the two are more symmetrical. Plus I will be tattooed at the same time. Then all should be done! It has been quite a journey, but I am glad that I have had it done. I hope this helps anyone out there who is searching for answers. My cross over journey is the side effects of takingTamoxifen for 6 years. In the past couple of years I have had 2 curett's (hope the spelling is correct)- during one had pollop's of up to 3cm burnt off (benign)& as I am still having the odd bleed I am having another pelvic ultrasound in a couple weeks time. Pap smear was clear, but just finished a course of antibiotics for an infection that was present. I have asked about a hysterectomy, but was told I was being a bit drastic. I have heard about a procedure where the uterine wall is burnt out, perhaps this could be an option?? If anyone out there has any info that would help, I'd love to hear it. Thanks in advance.

Me too! Like you,I had a lumpectomy,full node clearance and radiation in 2003.Breast cancer came back in the same spot 7 years later- same pathology oestrogen +ve.(2010).I had a mastectomy and then chemo and Tamoxifen.I was told I was in the unlucky 8%who can get it again in the same breast?However,I'm beginning to think that the 8% might be a lot more because I've met so many women in our position.I guess we are lucky that it was EBC and not secondary.But it's a pain jumping through treatment hoops again and being lopsided. Hope you cope ok with Doci chemo(bit of a harsh one).Are you in Sydney?Sue(above) and I are in the same bc support group which really helps.I've been fine for the last 4 years by the way.Sending hugs,Tonya xx

Hi Sue, Thanks for the reply, sorry to hear about your second (but a bit glad I'm not alone). Just when you think life is getting good again, then bam! The other ladies at the hospital were a bit scared to talk to me, they were all surprised to learn that you can get a new primary breast cancer and I think it was a bit confronting. I asked my surgeon to take both breasts off but he refused said there was no point in removing a 'healthy' breast, now I just keep wondering if it will come back again. Hope all your tests go well, good luck.

Hi Jayne, Yes, I feel your pain. My second diagnosis was last year 12 years after the first time. This time in other breast but had both removed so hopefully that is the end of that. Just waiting for familiar test results then possible ovaries removed. Happy with the double mastectomy but it takes a bit of getting used to. All the best for your chemo. Sue