secondary breast cancer with cancer of the unknown primary

Living with secondary breast cancer Supporting each other and sharing experiences
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Hi folks

I was just wondering if anyone on here had been diagnosed with secondary breast cancer with cancer of the unknown primary.I have finally had PET scan results not showing any primary.So because I had DCIS grade 0 high grade breast cancer 5 years ago which they said didn’t require treatment. Now they are saying the right ampillary lymph node which is measuring 1.2 mm classes this as secondary breast cancer as this showed up on ct and pet and biopsy stated metastatic adencarcinoma and doctor says it has spread   from somewhere else  in the body, although on pet there was no spread,due to pathology report they think it is breast related so are treating it as this, but I am terrified they have got it wrong and they are giving me wrong treatment.I started on low dose paclitaxel for 12 weeks today and herceptin every 3 weeks .I also wondered what the rest of you eat as cancer loves sugar so I am on a diet with no sugar in it mainly veg and green tea small bit of chicken green smoothies but my weight is dropping 2 lbs a week as I also have no appetite atall .Hoping some of you can give me some input.

Thanks very much Gina K

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Hi Gina,

I’m so sorry to hear your news and that you find yourself here, sending you big hugs xxx  Its bad enough that there is suspected cancer, let alone the fact that it sounds like they aren’t sure what its primary is!  Its always scary getting news and then not having the full information to justify / back up whatever treatment plan the Oncologist puts you on. 

Its understandable you have no appetite due to what you are going through, I have had periods of the same throughout my time on this particular road!  All the anxiety, stress, worry and side effects of treatment can really hammer your desire to eat.

I haven’t exactly been in your situation but perhaps there are others here who have and can give you some of their insights.  What I can relate to is the “how do they know what it definitely is” part.

Its good that they have done a biopsy for you - the results will usually give the Oncologist the information they need to decide how to treat you.  I’ve had two biopsies, one at primary diagnosis and my other for secondaries where they suspected the cancer had spread to my spine.

Its always a good idea to be as honest and open as possible with your Oncologist about your fears and anxieties, because they need to know what is affecting you in order to be able to help you.  Sometimes having extra information or just understanding how/why they have made a decision can mean the world of difference to your own mental and emotional health and how you find ways of coping.  Don’t be afraid to ask them as many questions as you want!

In relation to your sugar question - I have read tons of stuff (and been told by many people who think they know!) that sugar feeds cancer.  Cancer research UK have written this article about it which is well worth a read:   scienceblog.cancerresearchuk.org/2017/05/15/sugar-and-cancer-what-you-need-to-know/

If you are interested in the topic, there is a book called “How to Starve Cancer” by  Jane McLelland.  The book and the general discussion about sugar has come up on this forum before I’m sure, so if you have a search, you can perhaps find other posts about it.

I did find that eating healthy and keeping sugar intake very minimal definitely helped ease the side effects of treatment.  I felt it was important to maintain a healthy weight (so not over or underweight) and psychologically it made me feel much better knowing I was looking after myself.  If I didn’t eat enough, I often felt nauseous and had little to no energy and wanted to stay in bed all the time.  If I overate, I ended up with bad gastric reflux. 

Whether or not any cancer can be cured or sent into remission by diet alone is something of a massive, hotly debated topic!

Wishing you all the best with your treatment xxx

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Hi GinaK

It is a difficult time when you are given a secondary diagnosis but all the more difficult to find out information is, like yours, it is not completely clear where the mets came from.  The only thing I know is that the pathology of the biopsy will show that it is breast cancer cells, not from a different primary cancer type.  Hence them treating it with drugs more used in breast cancer.  Again, as Gillyflower has said, talk to your oncologist if you want to understand more.  I think they don’t always know how much we, as patients, want to know so don’t always explain.  Once they know that you would like more information they are happy to share in my experience.  Plus of course you are entitled to copies of all reports written from scans which often have more information in them.

Nicky x

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Hi Gina,

My primary has never been found, on any scan, but due to a biopsy of my lymph nodes my Oncologist was confident that I had breast cancer, which had already spread to my spine by the time I was diagnosed in 2015 with Er+ Pr+ Her2-ve…I’m thinking you must be Her2+ve as you mention Herceptin?

I’d been going for routine mammograms for 14 years by this stage, all clear, as I had first presented with a lump in my axilla back then. A biopsy was attempted then but was unsuccessful, so it was decided to do the routine mammograms and observe.

My Oncologist told me that while it isn’t common, not identitying the primary happens more than you might think.

Like you I avoid all processed sugar, and eat a mainly organic whole food plant based diet, if I eat any meat it is organic and grass fed from a trusted farm, any fish is wild caught, not farmed, and I don’t drink alcohol…maybe a small glass at Christmas or birthday, but that’s more to keep everyone else happy, (I get migraine headaches so never drank much anyway because it was a trigger). Although my diet has been questioned from time to time, it suits me and I don’t feel deprived in any way, infact I wouldn’t want to change it.

I am blessed to have an Oncologist who I get on with very well, infact she has been a tower of strength to me, she knows about my diet and supplements but says as my scans and bloods are good she can’t really argue. I did lose weight initially, down to what I used to be before the menopause, it then stabilised and sadly since I’ve put a few pounds back on, but now I do occasionally eat things like rye bread and white potatoes…so more carbs…than I did back then. I found medjoul dates and nuts were great, I had them every morning, (still do), both to curb my sweet tooth (which has now gone) and to help with calories.

As has already been said, I believe my diet has helped with my treatment as I had very few side effects initially, and they have now subsided. I’ve bought many books over the past four and a half years, ‘How to Starve Cancer’ included, it is a very interesting read with some very successful results. My favourite book though is Radical Remission, I would recommend it to anyone with any illness.

I understand your concerns as initially I kept wondering myself, what if it isn’t breast, but I knew I was having a scan in three months and reassured myself with that. 

Take care,

Kate x