Bena Roberts

Metaplastic Breast Cancer Group and Research Update

Why do people get cancer all the time?  Why is Metaplastic Breast Cancer so rare?  Why do some people survive and some people die?  For what reason do we fight on and try and live even though inside we are falling apart?

Could it be that the world in which we live in is plagued with chemicals, additives, bad food and too much sugar?  Stress is confused with career and cancer is sometimes a second chance for many of us?

I don’t know.  I am not Aristotle.  But what I do know is that if you find out you have Metaplastic Breast Cancer (MBC) and you need someone to talk to. Then we have the group just for you.

It can be found on Facebook.  It is completely private so no one from your family can see what you write.  We have three great Admins, Judy who is a three year survivor.  Cari who is finishing her own chemo and radiation plan for MBC now; and me, Bena.

 

What we have found?

With over 200 women on our forum we have conducted surveys and questionnaires on why we think we got cancer and specifically on MBC.  As you now MBC is extremely rare.  It effects 0.01% of the women with breast cancer and it is extremely aggressive.

We have found that there are two common types.  One that spreads to the lymph nodes and one that just grows in the breast and then jumps sporadically to other organs. We have about 15 hormone positive MBC patients on our site and the rest are triple negative.  

But there are some things that all types of MBC have in common:

• It grows very quickly and very aggressively
• It is often confused for a cyst
• It can be painful and hurt (usual breast cancer lumps do not hurt)

How do we deal with Metaplastic Breast Cancer?

• We must deal with this aggressively
• Depending on age this means chemo and radiation
• In 40% of cases chemo prior to lumpectomy has worked.  Unfortunately this is a bit of a gamble and depends on the type of MBC that you have.  Some ladies that have had chemo and it didn’t work – progressed to stage 4 cancer quickly.
• Your chances of survival with stage 4 MBC are slim.  But we have two girls on the forum that are alive and kicking.

 

If you are doing research on Metaplastic Breast Cancer please contact me.

If you have Metaplastic Breast Cancer and want to join our group please search Metaplastic Breast Cancer on Facebook or click here.

When Cancer Hits

When Cancer Hits

When Cancer Hits is one of many books on cancer.   But it is one of the few that does actually deserve an accolade.

I am surprised that I feel that way, because when I received the book – I was nervous about reading it.  When you live cancer and you have chemo, five operations and radiation… you read books and you try and be positive but the books that you read gloss over the bad bits. 

Or the alternative is that they blame you for everything you did wrong in your life (you drank too much, you ate too much sugar, you ate too much salt…).  Then you get more depressed and never finish them.

 

Today I ran 10KM and then cried like a baby

 
I can remember when I couldn’t run 100 meters.  During chemo – I couldn’t even complete Wii Fit exercises.  But earlier this year I joined a running club (www.zeitfuersport.com) and today I ran 10KM in 1 hour 11 minutes (www.jogandrock.com).  It’s not my best time – my best time is 1 hour 8 minutes.  But hell, it was GREAT and I feel great and I ran with some dear friends (see pictures).

Please donate to my metaplastic breast cancer charity

As the founder, Editor and more often than not the CEO of GoMo News, I have met some wonderful and remarkable people.

 

One year after the end of chemo... still bald, but fit!

My sisters family and my family went to Italy for a lovely Easter break.  I can’t remember Easter last year I was spaced out from my sixth chemo and it was hell. 

 

I did it! and Kris Carr Crazy Sexy Diet book review

I am intoxicated on fresh air and veggies!  I did it.  After a very long seven months I have hit my first goal weight!  I am now 59.9 KG or 9 stone 4 or 132 pounds!  It feels good.  But I am sure I still have a good few months to go before I hit my dream weight of 57 Kg or 8 stone 12 or 126 pounds.  But lets see.  I feel great and I think that I can do it.  I just need to start going to the gym a bit more and add an extra yoga routine to my activities.

 

So, my dear cancer BFF recommended that I buy Kris Carr’s book Crazy Sexy Diet – eat your veggies.  I have to say, it was a great recommendation.  I think the book is fun to read and encourages cancer patients to stay healthy and get motivated.  However, I also sort of hate the “feel great about yourself part” in the book. 

Why?

Well.  However much I like Kris Carr and her writing.  I hate her, because she never had chemotherapy.  I know this sounds very cruel and not very Hindu like – but I can’t help it.  She managed to mediate and eat what she wanted and control her cancer which is great.  But I went through chemo and loving yourself and enjoying sex (one of the things that Kris gets hung up on in the book) isn’t easy after six months of chemo and 37 rads plus five operations.

Now, don’t get me wrong.  I still love the book.  But I think that finding inner peace after chemo will take a bit more time and effort.  Even yoga and meditation can cause pain in my arms where my wounds and scars are.  It’s not the same chanting Sat Nam in front of your temple sitting on a haemorrhoid  ring!

But after reading her book; at least I am trying.  I have turned vegan and am actually enjoying it.

I am trying to motivate myself to write a book on healing and getting through chemo organically to offer pain relief and support to us cancer patients that are still suffering the cruel side effects of chemo.  It is hard but there is nothing out there that really helps us.  Everything I have learnt has taken hours and hours of reading and going to the chemist and shaking doctors!

Cancer strikes but it is the chemo that has the last laugh

The term “it’s a cancer” is often used to describe the fast spread of the disease or similar. Only when you get bad news do you realise that cancer really is a killer and the disease is vicious. But on top of that, there is confirmation that the current cure for cancer is also more of a life lengthener than a cure.

 

 This morning, we received an SMS from our dear friends in Emden, north Germany.  My husband’s best friend Cyrus wrote, “if you want to say goodbye to my dad; now is the time”.

 

The end of the worst year of my life

I am skipping past the death of my beloved dad and grandmother.  This is not an easy decision; but the enormity of cancer has carved its way to the top of my worst year in history list.

Thank-fully, the year of cancer is now over.  Yesterday marked the day I found the lump.  The ugly, impressively monster like mass of cancer that would go on to change me and the rest of my life forever.

Anyone on the PARP Trial?

My dear friend Heather Wettig-Zenz also has breast cancer. Her cancer is triple negative like mine but not metaplastic.  Unfortunately, her chemo isn’t working and the cancer had spread and also grown 5.1cm. The doctors are now sending her to Ohio to participate in the PARP Clinical trial.

Is anyone on this PARP Trial?  Are there any success stories as so far some of the nurses have told Heather to expect the worst... but she is a fighter and I know she is going to survive this.   

Any positive news or success stories would be much appreciated if you comment or email me directly... so that I can share them or introduce you to Heather...

 

Thanks Bena.

Can you tell I have cancer?

I walked up the back of the house through the garden. I was nervous and I could feel tears of fear swell in my eyes.  It was disturbing –but it was the moment of truth too.

For months the reality of cancer and my looks had been masked by my mother telling me that I was beautiful....my husband would also call me insane when I said “people were staring at me”.   Both of them denied I looked any different and refused to believe me when I said I was getting fatter. But now my best friend Catrin (who I hadn’t seen since before I was diagnosed) was arriving and I knew that her eyes would tell me instantly what I looked like and how hard the months of chemo abuse had damaged me.