Genomic Testing?

I just checked @Mjheke, and I did. Sorry, crazy busy day. And please forgive me if I repeat myself. I have CRCI; my brain is not what it used to be. I've PMd you back. K xox

Hi @kmakm
i did PM you earlier. Did you not get it?

M x

@Mjheke You are in a similar position to me. I was 51 when diagnosed in December last year.

If my BC had been the first in my family I would have proceeded to radiotherapy after my wide local excision and re-excision. However as my sister had died from it and my mother had had it at my age, my oncologist thought that if I could afford the genomic test I should do it. It cost $3000... I did it and it came back a clearly positive that chemo would have a cuative effect if some cancer cells were looking for somewhere else to roost in my body. So I took a very deep breath, accompanied by a lot of swear words and a massive panic attack two nights before I started, and had chemotherapy.

I had my radiation oncology appointment today and my dilemma is the other way around. Whether to have genetic testing to see if I DO need chemo. At this stythey are saying just radiotherapy.  I am not funded for genetic testing but my surgeon and the radiation oncologist said it is up to me to be tested for it as I am ‘borderline’ as to whether they would recommend I have it. I have a sister who had cancer at 41 and breast cancer on my Fathers side also. The only issue is is that it will delay my radiation treatment, although it will already be delayed by 2.5 weeks due to Christmas. I would be put on hormone treatment in the meantime until the results come back in. They said I would be closely monitored so that any return of the cancer would be picked up early. My concern is that the close follow up is only for the first 5yrs to return to normal screening, but I am only 49. I feel maybe it’s a long time not to know if I have the opportunity now. But then do I want to know?? 

The decision has been left up to me, but I am far from knowing what to do!

any thoughts or input would be appreciated. 
M 😊

All really good advice. It's also possible that, like me, you won't be nauseous at all (and take no anti nausea drugs) or have fatigue. It's the worst kind of lucky dip - no rhyme or reason for what you get or don't get, most of the time. The only real side effect I had from A/C was compounded by other (non cancer related) factors. I loathed Taxol for its sheer annoyingness, most people find it easier than A/C and most of the side effects disappeared pretty quickly once the treatment stopped. Most of us end up with chemo because that way we have done as much as we possibly can to get shot of cancer. It's still a pretty compelling argument. Many side effects can be alleviated to an extent, so as @Sister says, don't suffer in silence or wait in case they magically get better by themselves. Everyone has different ways of coping with treatment, and it's hard to know what suits you best till you start. But then do it - whatever anyone says! Working was good for me, as I was perfectly able to do so and it kept my mind occupied on something other than bc and treatment. Taking time out is necessary for others and better for them, let others step up and don't feel guilty! Unless someone has actually been through it themselves and knows what they are talking about, thank friends/family/etc for their kind but unhelpful suggestions and stick to your guns about what works for you. Breast cancer is an extreme way of focussing on you and what matters to you, and you wouldn't do it by choice, but when stuck with it, get as much out of it as you can. Best wishes.
. 

The biggest advice I would give to anyone starting chemo @Caccal is don't suffer in silence.  You will probably get sent home with some steroidal drugs and some Maxalon for nausea.  If the drugs aren't controlling the nausea, ring your clinic and ask for something better.  I struggled through a whole weekend the first time - I couldn't sit up and I couldn't lay down - absolute and utter misery.  I didn't realise that I could have rung up on the Saturday morning and got better drugs.  I ended up on Ativan and Somac which controlled the nausea and reflux (and helped me sleep through the first couple of days each time) but went through until Monday afternoon before I got them.  So, ask what number to ring (including after hours) if the drugs you're given to take home don't cut it.  And being prepared, you'll probably be fine.

Shan_07 I am so sorry you are going through this while pregnant. Thank you for your insight and yes I am thinking that node involvement is the game changer xx

Hi @Caccal I had the prosigna gene signature done and got my results back yesterday. I was due to start chemotherapy but as my results came back I was in the Subtype Luminal A Group so chemotherapy was not something I apparently need. Will go onto Radiation and Hormone Therapies. I’m also 22 weeks pregnant.  I’m not sure familiar with the test you have had done. 
Your moving through your grief, and processing all of the information. Your oncologist may want the chemotherapy due to having node involvement. It will give you that extra piece of mind knowing you have done that extra bit of treatment. 
My oncologist said the chemotherapy is your insurance policy, it will help to give you the best treatment to help prevent a future recurrence. 
Sending love hugs and kisses. 

Hi @Caccal,  Welcome lovely. I can't help with the testing. I didn't even know about that one at the time.

The whole thing is heartbreaking definitely and chemo is not an easy choice to make. It is the big scary monster in the deal. So many unknowns.  I think one of the worst parts at the beginning was I felt like I had no control of the situation.   Don't be scared to ask questions and don't be scared to say no if you don't like something. It's a bit like a cattle call if you don't speak up.  There is a system that is expected to be followed beacause it suits a good majority.  That does not mean it will suit you. 

No...You won't put that cannula there, it hurts
No.  I don't want the Neulasta needle afterwards it makes me sick
No..I don't want a porta cath thank you.
No. We don't start until I am happy with the cold cap fit.  etc etc etc.
You get the picture.  
This is your gig.  

 Chemo stinks but as the ladies have said there are a lot of good drugs to combat the vast majority of side effects and some of us get through not too badly. 
  I  had AC-T.  The AC is somewhat average to say the least but definitely do able.  I found it cumulative so the last one was a bit of a hard slog.  Worst part was the hot flushes of atomic proportions and that rotten taste in your mouth.  Stock up on fruit tingles.

I found Taxol pretty easy compared to AC and Rads was just a pain in the butt driving there every day.

Kept my hair with the cold cap, minimal fatigue, worked, ran the farm, did all my usual stuff.  Sure there were some crappy days in amongst it and tears but there was also a lot of good things that I did along the way.  Try to take photos of all the good things you do amongst it.  That way when you look back that part of your life is not all about treatment.

All the best lovely.  You'll get it done.  What seems like an insurmountable 6 months will be gone before you know it.
Hugs
xoxoxoxo

Thanks Sister, this sounds like me. Similar size tumor plus 3nodes but a second tumor found before surgery so double mastectomy. It helps to have people here that have gotten through. Its all so scary and where I thought I was positive and brave before, this has changed me. I am down and scared all the time. I was desperately trying to avoid chemo hence the oncotesting which I will still have because I have paid for it but chemo seems the only way. I have made it the big monster. I have a couple weeks till I get the portacath and then its AC & T mid December. Thanks for your reassurance everyone. It really is true kindness that you love and support us newbies to the "club"