new member and a few thoughts

Hi all.

I am breast cancer husband. My wife who is 33 has just been diagnosed with triple negative breast cancer, 3cm tumour, she had a single MX last week, sential node biopsy was clear, although we get the full results end of the week. She will begin chemo very soon. She is also 18 weeks pregnant. Furthermore, she also lost her best friend to TNBC in September, although she was diagnosed at a very late stage. But we can't believe that cancer is back in our lives so soon.

Obviously we are both scared, but trying to deal with this head on. I work in medical research, not breast cancer specifically, although my lab have just begun to initate some breast cancer related projects (there will certainly be more now!). During our friend illness I was often the medical port of call and explained so much about what was happening. I never though I would be on the otherside.

I've read many of the posts on this site. Every single one of you are special and so brave and I only have the upmost respect and admiration for each of you.

I have been doing lots of reading and question asking over the past few weeks and have put together some thoughts and points. I hope many of you wonderful brave ladies can take something from my ramblings below. xxx

• 1) Morewomen survive TNBC than don’t! – Ok, let’s look at the stats. According tocancer research UK, the overall 10 year survival rate for breast cancer is 75%.It’s still not high enough and medical science will not stop until its 100%.But this is significantly better than it was 20 years ago. This figure is from2007, anyone diagnosed with breast cancer in 2014 will have an even greaterchance of survival. Now, one cannot deny that the prognosis for TNBC doesappear worse; the 5 years survival rate is ~70%, (compared to 85% for hormonepositive cancers). However, I had a conversation with an oncologist last weekand he made this point which I thought was interesting. Taken very simply outof 10 women 7 will survive 5 years, 3 won’t. But why do those women notsurvive? Well of course there are the obvious reasons; more aggressive, greaterchance of reoccurrence etc, however there are other reasons. One of those women probably presented at a much later stage and was never going to make the 5years, one of those women may have been in her 70’s and elected not to have chemo that would have helped her survive. One of those women may have come froma rural part of the UK and may not have had access to the best care quickenough. One of those women may have been young, but refused chemo. One of those women may have been young, ignored the lump and by the time it was diagnosed had a worse prognosis. The take home point is, while the stats paint a pictureof a worse prognosis, more women still survive TNBC than don’t! And those don’tsurvive, of course it’s still an element of luck (i.e. how far the tumour hasspread, aggressiveness etc) but there are other reasons than might distortthese stats a bit. Also, when you read about TNBC you always see “poorerprognosis” but and this is a big but, this is poorer prognosis compared to the hormone positive breast cancers. You need to remember that compared to other types of cancer (i.e. lung, pancreatic etc) the prognosis for TNBC is actually very good! And keep this mind – more women survive TNBC than don’t!

• 2)TNBC is “new!” – Well that’s not true, TNBC has been around for thousands of years,but it’s only over the past 10-15 years that scientists and medics have become more aware of TNBC. Indeed reading these discussions boards it is evident that many long term survivors presented as ER and PR negative, HER status wasn’t tested for! Many “double negative” survivors would have even been treated with hormone suppressing drugs years ago due to lack of understanding of hormonal status, especially in smaller cancer centres. Lots of retrospective studies have been done looking at survival rates etc and yes, again you can’t argue that maybe the prognosis isn’t as favourable as those with hormone positive tumours, but I wonder how many women out there have fought and beaten TNBC, but never even knew they were triple negative? And many of these have probably slipped through the net as it were and aren’t included in follow up studies. Also, lab tests for ER/PR and HER have significantly improved. Years ago, there probably would have been more false positives (i.e. path results showing positivity for ER/PR but these were false results). As we understand more aboutTNBC, more follow up studies will be done and I believe that the survival rateof TNBC will be significantly higher in 10 years’ time. Many of you ladies will become statistics, but of the good kind!

3) TNBC is scary, deadly, a nightmare – well yesit is. But so is any cancer. Any tumour has the potential to kill you. But while breast cancer is a very emotive issue, the success of screening programsand treatments that have led to excellent survival rates has in some respects pushed breast cancer down the headlines. What sells a newspaper or web article better? “34 year old woman beats breast cancer” or “Deadly breast cancer kicked into touch by brave young lady”

To be honest Iwould click on the latter. I’m not denying it’s a scary diagnosis, but becareful of what you read online!

• 4) TNBC oftenresponds better to chemo – most of you will know this anyway. But since TNBC is normally grade 3 (aggressive cells) these are the cells most likely to succumb to the harsh chemo drugs used in clinical practice. Indeed, chemo has been shown (quite a few published studies) to be more effective against TNBC. Ok, there isn’tthe option of hormone suppressing drugs after chemo, but if caught early enough and treated appropriately, once that chemo and radio is done, there is no needfor further medication.
• 5) Diet and exercise can help prevent reoccurrence of TNBC – still more work to be done on this but have a look at this research. http://www.ncbi.nlm.nih.gov/pubmed/17179478 and this is the lead authors webpage http://www.cancer.ucla.edu/index.aspx?page=243&recordid=45
• Ok, it doesn’t mean it won’t come back, changing your diet may not be the miracle cure, but then tamoxifen isn’t a miracle cure. You’ll certainly get less side effects from having an healthy diet!
• 6) There are plenty of positive stories out there! – Yes there really are. Search the web hard enough and you’ll find them. Coming back to point 3, many are lost in the google hits generated by typing “triple negative breast cancer” (most people have clicked on the sensational headlines!). How many people really search past page 10 of their google search? You will also find that these discussion boards are bias towards the recently diagnosed and those in treatment. (And rightly so). Many “survivors” will only come back to post once or twice a year oncetreatment is done. I’m sure many never come back, cancer would have been a darkpart of their life that they want left behind. Also, a large majority of people diagnosed probably won’t be posting on these sites. I’ve found sites like these a God send, but my wife who is the one actually fighting this, never ventures onto discussion boards. There are plenty of survivors out there, (point 1 – more women survive), but most probably won’t be posting online.
• 7) TNBC appears to be a blanket term – a subtype ofTNBC actually has excellent prognosis. The journal “Nature” is the gold standard for medical research. In the research world we all aspire to get ourname on a “Nature” paper. This link is for a recent paper published in Nature (http://www.nature.com/nature/journal/v486/n7403/full/nature10983.html) and this cancer research UK page gives a good summary; (http://scienceblog.cancerresearchuk.org/2012/04/18/increasing-the-resolution-on-breast-cancer-the-metabric-study/)
• The data is from the METABRIC study, a large study of genes in breast tumours. The authors cluster tumours into 10 different groups.Ok, TNBC has a poorer outcome in the short term, but we knew that. What was very interesting is that the group termed cluster 4, includes a set of TNBC tumours and has excellent prognosis. These tumours had high levels of immune cells inthe tumour mass. Basically the immune system is getting involved and keep the tumour in check.
• 8) Longer term survival is often better than hormone positive cancers – A number of retrospective studies show that although reoccurrence is greater in the first 3-5 years with TNBC once you are past that mark it significantly drops and indeed after 8 years you may well be considered cured. For hormone positive cancers reoccurrence can occur 15-20 years after the initial tumour.
• 9) The odds are in favour of not reoccurring – again,coming back to stats and figures, even with hormone positive cancers there is a 15% or reoccurrence, overall for TNBC its twice this, 30%. But that still means that you are more likely not to reoccur. Also, for many women, the chance or reoccurrenceis much less than 30% (tumour size, node status etc).
• 10) The medical world has more experience of treating TNBC now – I’m probably repeating myself now, but doctors know more about TNBC ,they have more experience treating it and they have an ever growing pool of studies and cases to draw from. More women diagnosed with TNBC today will be survivors in 10 years time and this period of cancer will be a distant memory.
• 11) Finally, (thank God I hear anyone reading this cry!) the research world moves fast. Veryfast. I’ve been working in a research lab for 11 years now. Experiments that,11 years ago would have taken me a whole week can now be performed in a few hours. Sequencing a tumour genome was a massive undertaking, now it’s anautomated process that virtually any lab with a reasonable amount of cash can undertake. Funding bodies are pumping millions into fast tracking ideas from bench to bedside. New and novel ideas are emerging all the time. This study for example shows a method to kill circulating cancer cells in mice, granted a long way from clinical use, but the concepts are ideas are there. (http://www.pnas.org/content/111/3/930.full).
• This study from this summer identifies possible targets inTNBC (http://clincancerres.aacrjournals.org/content/early/2014/09/10/1078-0432.CCR-14-0432.abstract) It also highlights the different TNBC subtypes and throws up the one that has the immune system involved.