Triple negative recurrence

Hi Patch100

I'm sorry that you and your wife are finding yourselves here. Easier said than done but try not to trawl the internet. I've done that too (as have probably most people on here) and at one point i scared myself so much that i stopped! 

i have TNBC, a recurrence of breast cancer from 13 years ago but mine wasn't TNBC before. Was your wife TNBC previously. It is such a shock - my cancer is metastatised to the lymph glands in my neck and it was honestly such a shock because my previous cancer was such a distant memory. i thought this time, it was my thyroid but no the bloody stupid cancer came back. I completely understand how much of a blow this is. i have recently started oral chemo - capecitabine - and have just finished 2 weeks of tablets, i'll have one week off and then start again.

I have leant on my husband so much since diagnosis and so you informing yourself so you can support her is  a wonderful thing to do. Try to take each day at a time and when you are playing negative scenarios in your head, tell yourself these are imagined thoughts and try to put them out of your head. Its not easy but there is so much support on this website.

What are your next steps?

Good luck and you can do this x

Hi fhgirl. Many thanks for your reply. Your diagnosis seems very similar to my wife’s. It’s come back as TNBC but 3 years post original diagnosis. She has been on paclitaxel for just over a year and the disease has been stable. There has now been a very small change detected in the armpit lymph which now has disease all be it very small so the oncologist is suggesting capecetabine. 

I think I’ve had my head in the sand over the last year and now just starting to properly research which can be both confusing and terrifying. I’m trying to class it as a regional rather than distant recurrence.....looking at the stats the survival rates seem a lot better but I might be delusional. 

I guess we all want hope

Hello Patch. TNBC here too. My own policy when researching online is to stick with websites that belong to universities and hospitals, and then check the date of the publication, because where things stood say five years ago is not where they are now. (For instance, I was diagnosed in December of last year and was told at some point that I was one of the first to receive a treatment that had only just come out of trials and was being made a standard.) The Macmillan website is reliable too, my oncologist uses it sometimes to give information to patients. 

In your opening post you said the cancer was low volume. Did that mean low grade or a low volume of mets? Also, if you say what specifically you are aiming to find more information about, perhaps we could help with reliable links.

Regarding survival rate statistics: while they do provide a rough guideline, they can be misleading because they do not take into account factors such as the existence or absence of other health conditions, they just lump everyone together. They also tell you what it was like up until the point that statistic was published, but with new treatments appearing, women who are treated now may become part of a newer, better statistic, which had happened again and again over the last few decades.

Hi Greycats - many thanks for replying. I think low volume refers to the quantity of the disease so I guess volume of mets. So far it seems to be restricted to neck and armpit lymph. 

To be honest I’m not sure what I’m looking for other than Hope. 

When there is no distant metastasis the aim is to cure. Armpit lymph nodes are not considered distant. Best to clarify this point fully with the oncologist as he or she may be able to give you a clearer picture of the teams aims and expectations, which could contribute towards feeling more hopeful. 

Cancer, and the recurrence of cancer, can be really tough not only on the patient but also on the people closest to the patient. There are forums on this website for families, friends, and carers, where people can find additional support and advice in addition to what this forum here offers. 

Many thanks Greycats - appreciatef