"We Need to Talk about Secondary Breast Cancer"

For those wanting to share with others living with secondary or metastatic breast cancer.
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The new girl
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Re: "We Need to Talk about Secondary Breast Cancer"

Postby The new girl » Sun Jun 26, 2016 9:30 pm

:wave: it's definitely something I think about on a regular basis,the fact that it can come back,the reality that it could spread,I am actually convinced that it will. I also have a friend of a friend who has gone through prostate cancer but refused to go down the conventional methods of treatment and chose to look at other alternatives,he has sent me so much info regarding cancer how chemo is not a cure and that there are lots of natural foods are the answer but I am sooo confused if anyone is interested I will forward this info but apparently it's been going around on face book which I don't know anything about
Rosa

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Re: "We Need to Talk about Secondary Breast Cancer"

Postby JudyB » Sun Jun 26, 2016 9:04 pm

Tracey I agree and would go even further to say that most doctors deliberately don't give out this information. When I was first diagnosed all my oncologist said was we don't want a recurrence. She gave me no reason why and I assumed that we didn't want that because.... well because we'd still be fighting it. It wasn't until someone on here, Cherub I think, pointed out that a recurrence means stage IV and terminal. I can't say it didn't hit hard but I am very glad that I know this and understand it. I think it has helped me understand how lucky I am that so far I have not had a recurrence and I think that it has helped with my oncologist as well. If ever it happens my oncologist won't have to explain the situation, we can just get straight onto what we are going to do treat it. Don't for a moment think that I won't fall apart because I am sure I would but at least we would both be on the same page.

I know that when I have my mammogram I always say one more year and still NED. I know that a mammogram wouldn't be showing the mets but it is an anniversary of the original diagnosis mostly so I treat it as such. I am well aware that just because my mammogram is good or even just because no one has found any mets it doesn't mean that I don't have any. It just means that they haven't bothered me enough to get them checked out (if they exist of course.) I am assuming other women are like me so we can't really assume that women rejoicing in another clear mammogram are assuming that they are definitely cancer free.

Like you I am astounded though at the lack of education regarding mets etc., when it comes to some of the women on my FB page for uterine cancer. I think that so many of them feel that if they get a recurrence they will just go through everything all over again and hope it works the next time. We know that's not the case. One woman has just had a recurrence after ten years and she is so angry with her oncologist. She is cross that she has not had follow up scans and wants to know where the cancer has been all these years. She feels that if she had had a scan straight after treatment it would have been seen and treated and then all would be ok. I tried to say that she shouldn't be angry with the oncologist but oh my all the women saying yes she should, they would be too. They obviously don't understand it either. I didn't push it but I feel sorry for the oncologist at that woman's next appointment.

I do feel for the women with secondaries, not only for obvious reasons but also that they are dealing with so many who assume that they are in the same boat as women with EBC. Unfortunately I think this is made worse by all the breast cancer awareness. I know when I tell people that my cancer may still recur and then will be terminal their eyes glaze over and they change the subject or they think that I am being melodramatic or they brush it off with a 'knock on wood' type of attitude. They don't want to know. It makes them uncomfortable.
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Re: "We Need to Talk about Secondary Breast Cancer"

Postby Tracey Gibney » Sun Jun 26, 2016 7:51 pm

Interesting article Janette thanks for posting. I have never felt left out especially on this forum however I do think that many women who have finished treatment for EBC have little understanding of secondary breast cancer. I think many combine a " positive attitude" and ignorance is bliss attitude to the possibility of developing mets. I have also found that many think women who develope mets have not done everything they could to prevent mets which is just not true. I am also surprised how many women don't understand the realities of mets for example women posting how relieved they are after their yearly mammogram and exclaiming they are cancer free when in fact they don't know that at all. What they know is that they don't have a new breast cancer, they could have a met but they haven't been screened for mets.
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance

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Re: "We Need to Talk about Secondary Breast Cancer"

Postby Mighty Oak » Sun Jun 26, 2016 5:17 pm

Interesting article Janette. Strange to read that those dealing with secondaries can feel 'left out' because of the high profile of those dealing with ebc and active treatment. Food for thought.
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Re: "We Need to Talk about Secondary Breast Cancer"

Postby The new girl » Sun Jun 26, 2016 2:16 pm

:wave: thanks for that Janette,it was a good read
Rosa

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"We Need to Talk about Secondary Breast Cancer"

Postby Janette » Sun Jun 26, 2016 12:59 am

Here is a link to an interesting article in the Huffington Post, written from the perspective of a woman with primary breast cancer. Thanks to the Advanced Breast Cancer Group Qld for sharing the link.

http://www.huffingtonpost.co.uk/tamsin- ... 47000.html
Janette



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