Newly Diagnosed Triple Negative and 28.

Hi d- so glad you found us its very overwhelming and a lot to process. Lots of good people and information here.

When your wife is ready she may gain support from this site too or choose to read over your shoulder for now.  I can imagine its quite disconcerting to be living abroad and get a diagnosis of breast cancer but it sounds as if you are comfortable with navigating the healthcare system where you currently reside. 

I would suggest putting in the "search" window here  things like you did for triple negative etc. there are an awfully lot of groups which you can search through but I have seen many postings from young women with triple negative and I believe there is one titled neoadjuvant. 

I was diagnosed with a different type of cancer but wanted to reach out and offer you support and know we are reading your postings. I did not want you to go through several hours until people would respond as its late on the West Coast of the United States but when people catch up they will respond with their experiences which helped me very much and I hope will help you. 

Stay in touch

Hello d-

I can understand how
overwhelmed you both must feel, but do not take too much notice of
all the negative information on the internet about triple negative
breast cancer. Remember this triple negative applies just to the
receptors. You do not mention what type of breast cancer your wife
has. The most common is invasive ductal carcinoma (IDC).

The chemotherapy
treatment your wife is having is the most common treatment being used
for breast cancer of all kinds. FEC seems to be standard and the
taxanes as well, either Taxol or Taxotere.

I am much older than
your wife but had neo-adjuvant chemotherapy with just EC and
Taxotere. I had a very large tumour and one node, the sentinel node,
affected. After chemotherapy I had a mastectomy of the right breast
and then three weeks of radiotherapy with boosters. Despite the
original poor prognosis, I had a complete pathological response. This
was all back in 2005 and I am alive and well living a normal life
eight years and seven months later.

You might want to join
the large Calling all TNS in the TNBC forum. I also started a thread
Calling all triple negative breast cancer patients in the UK, but
anyone from all over the world is welcome.

With your wife's young
age she should be eligible for testing of BRCA 1 or 2 gene.

Thinking of you and
sending you my sincere best wishes. Keep looking forward. You can get
through this.

Fond thoughts.

Sylvia.

I feel
your pain, man.

My
wife was diagnosed with triple positive BC at age 25. Feeling helpless for the
woman you love is the biggest understatement. Not sure if you guys are in
the same situation, but we had the huge variable of trying to figure out what to do about our
fertility as we don’t have kids yet. But I know how you’re feeling quite
well: the life you build for yourself changes instantly and the reality of your
future goes to unknown and even dark places. It doesn't help that women around
our wives’ age chance of getting breast cancer lays someone in the 0.5-1% range
( I believe – regardless its very low). So, it really does feel like a
proverbial slap in the face for individuals who feel like they tried to do
everything right. So yeah, life can be cruel.

The good news for you guys is its 2014 and you caught it early. Also,
there was no detectable lymph node involvement which is always good. And I
wouldn't worry about the mammogram displaying a smaller size than the MRI. Same
thing happened to us, the initial ultrasound indicated the mass was 2.7cm, the
mammogram indicated 1.9 or so, and the MRI confirmed it was 2.7. Young women’s
breast are very dense so mammograms have a harder time picking up everything opposed
to the more powerful and thorough MRI. It definitely doesn’t mean it grew
within that time span! So yeah you caught it early, and with triple negative,
obviously its different then our situation, but I know it tends to be highly responsive
to chemotherapy. Also, most young women like our wives typically have aggressive
(high grade) cancer. Obviously this isn’t good, but in actuality, chemotherapy is
more effective in higher grade cancers (my onc confirmed this). This is because
chemo drugs target cells that multiple rapidly (which all cancers do but high
grade cancers multiple quicker still and is obviously why it’s considered
aggressive). So because they’re more aggressive their cell structure is weaker
as a result, making them more susceptible to chemo drugs. So all I’m saying is “aggressive”
cancer isn’t good but don’t take that as an end-all be-all – at least that’s
the way I cope with it lol.

Furthermore, it’s an exciting time for triple negative BC as there
are many new drugs and therapies in clinical trials right now. Here is an
example of one new technique being developed to combat triple negative released
just last week: http://www.mysuncoast.com/health/news/new-therapy-new-hope-for-aggressive-breast-cancer/article_40d86e70-7e27-11e3-bb3e-0019bb30f31a.html

And if you’re like me, you like looking for things that can
help you cling to hope and optimism. Well, its 2014 and the science and
understanding of cancer keeps getting better. Here is a link to the latest from
Cornell University that could be the next big evolution for all cancer
treatment: http://www.voanews.com/content/scientists-develop-cancer-killing-protein/1827090.html.

I’m really sorry you guys have to go through this and there
will be rough days. From husband to husband, if I can offer any other helpful
tips, it would be to try not always be a cheerleader for your wife during this
process (i.e. telling her it’s going to be okay, explaining the positive things
you have going for you, etc.), sometimes they just need to cry and you need to
listen without trying to fix everything. Something I still struggle with but am trying to get better. You guys will get through this. 

Ben

I too was diagnosed last June with Triple Neg (am in the UK). The tumour was 3.5cm in my breast and 1.3cm in nodes. I had 8 sessions of FEC followed by 8 Tax. When they scanned me(to put in a marker) after 2 rounds of FEC the tumour had already shrunk by half. After the Tax I had a lumpectomy and nodes removed and the path report showed I had had a complete pathological response. TN does respond very well to chemo and the fact that your wife does not have it in the nodes is a positive one to hold on to. Chemo is horrid. The FEC wasn't too bad for me I found the Tax horrible as it destroys the taste buds and not being able to enjoy eating on top of feeling horrid did put me in some depressed moods. However, this passes. I was on a 3 week cycle of chemo and by the third week I always felt a bit better and was able to stay positive. Each session gets a little worse as it has a cumulative effect but again you come through it. Of course everyone is different and I am older so she may well have more energy and less side effects. What I am trying to put over though is that however bad it feels at the time, there is hope and the side effects will eventually go -some taking longer than others. I have now just about recovered from surgery, hair is growing back, energy is increasing and am generally feeling I'm on the mend. Don't panic about all the bad things written online about triple neg-my husband did! A lot of these posts are old and treatment has come a long way. They are getting good results with the FEC/Tax mix. There are a couple of private facebook groups for triple neg that you or your wife may find helpful later, they can really help with getting tips on coping with side effects such as if the tastebuds go water tastes disgusting but a lot of people found carbonated water was ok. She will also value advice about hair loss etc and sometimes it's just good to know that what you are experiencing is normal as this can stop niggling worries. Feel free to message me with any questions or if you would like any introductions to the groups. Good Luck to you both-it's a difficult time but there's lots of good news stories out there xxx

d - during chemo, my advice is to eat whatever the body feels like. (I developed a fondness for greasy angus steak McD burgers and chocolate milk, go figure). Imo, your wife shouldn't worry too much about "proper nutrition," at this stage, but do try to eat lots of fruits and veggies.... and drink water, especially just before and immediately following chemo treatments. I found out about the taxol/grapefruit thing only towards the end of my treatments and I became frantic because I enjoyed a half-grapefruit at breakfast quite often. Given my concern, my onc had the research/pharmacy people turned upside down at my treatment centre (a leading one in Canada), and no one thought my moderate ingestion was a problem. I mention this because while you should follow instructions, you can drive yourself crazy with fear when you hear some piece of unexpected news, and in the overall scheme of things, it probably won't make much of a difference. 

I was part of a research study on exercise during chemo... so I walked 5K regularly and lifted weights, under the supervision of fitness specialists. (I'm also an avid downhill skier and kept that up during treatment... so I would encourage anyone who has a passion for a sport to continue with it, if you feel up to it, on onc's approval of course.) However, it's also important to listen to your body, and rest when you need to... and not to beat yourself up if you're feeling lousy and lazy... that's okay too.  Chemo affects everyone differently -- and whatever gets you through it is good!