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New breast cancer diagnosis

Re: New breast cancer diagnosis

Posted by Essjay on Feb 20, 2019 8:32 am

Hi Diana BC‍ i too have triple negative breast cancer. 

What this means is that the tumour does not have receptors present for hormones estrogen, progesterone or HER2, and so endocrine treatments with hormone suppressors like Tamoxifen or  Herceptin are ineffective. Triple negative breast cancer tends to be more aggressive and has a high chance of recurrence, but it does respond very well to chemotherapy. Treatment is usually a combo of  surgery-chemo-radiation. 

Im in cycle 5 of a dose dense ACT regime, following lumpectomy, and I will have radiation in the spring. My tumour was thankfully caught early.

im sure others from the ‘triple negative club’ will have more advice, but really it’s not so bad xx

Re: New breast cancer diagnosis

Posted by irishchick on Feb 20, 2019 10:17 am

Hi Diana BC,
welcome to the site. I am also triple negative. I had a Routine mammo end of Oct 2018, sent for ultrasound at the hospital 3 days later where core biopsies were taken. Called to to dr's office 8 days later for results of IDC, 1.4 cm, (stage 1), grade 3 (aggressive). I was seen by the surgeon 2 hours later, and had surgery 6 days later for lumpectomy and sentinel nodes biopsies (4). Had an enormous amount of foreign information as well as shocking diagnosis. Surgery went well, recovery as well, and then long wait of 5 weeks before meeting with the medical oncologists Jan 9, 2019 to find out what my treatment would be. At this appt is when I learned I was triple negative!

my lymph nodes were clear, as well as my margins. My chemo plan is 4 rounds of Docetaxel and Cyclophosphamide at 3 week intervals. My 3rd round is next Tuesday. My radiation consult is March 11th when I find out how many treatments of radiation I will be doing. 

Its all been overwhelming at the beginning, even till I got to the oncology appt to see what "my" plan was going to be. I look at every appt as one step closer to being on the other side. What I've learned is, that it's not so bad, as Essjay‍  has said, there's less options, but this does respond very well to chemotherapy. I've been trying to keep on the positive thinking that they've come a long ways in breast cancer treatments over the years. It's also been great to read on this site how others are doing, feeling, because they've been thru this. Hope this helps you. Where are you from? I'm in Alberta.

kathy 

Re: New breast cancer diagnosis

Posted by ashcon on Feb 20, 2019 2:19 pm

Hi Diana BC‍ 

As irishchick‍ and Essjay‍ have said, TNBC is not a nice version of breast cancer (actually there is no nice version of breast cancer, or any other cancer!), but 'standard approach' of treatment is used, and is shown to be effective in treating TNBC.  

As mentioned, TNBC does respond well to chemo.  I personally learned this after a few more lymph nodes flared up while I was on dense-dose chemo. (AFTER my lumpectomy and removal of 8 lymph nodes already (4 of which were positive.))
My oncologist switched me to the Taxol part of my chemo cocktail 2 weeks early, saying that TNBC responds particularly well to Taxol. Which it did.
The pathology report from my second surgery to remove those pesky lymph nodes (along with both breasts, at my request) indicated no cancer cells were found anywhere - not even in those lymph nodes that were known to be positive 4 months previously.
So the chemo does work.
I finished up my treatment with 25 rounds of radiation.

Because of the aggressive nature or TNBC, you will want to make sure you are entering treatment as fit as you can be, and that you take really good care of yourself (sleep, eating healthy foods, stay hydrated) through treatment so that you don't have to miss or push out any treatment cycles as a result of poor blood count.

The good news: if, after effective treatment, clean eating, exercise and healthy living habits, your TNBC does not resurface after 5 years, your chance of recurrence or spread actually becomes LESS than that for hormone-receptor positive or HER2 positive cancers.
So you get to own your post-treatment recovery plan to keep the cancer at bay.  I have switched to plant-based diet, I exercise 3-4x/ week and I am NED (no evidence of disease). I am coming up to the 2-year mark anniversary of my diagnosis, and I plan to keep my NED status for a long time still.

Yes, we're in that position of not having any medication like herceptin or letrozole available to us after we're done our primary treatment.  But I'm a glass half-full kinda person: without those medications, there are no side-effects to deal with!, 

Attached is a report on TNBC done in 2014 by a bunch of medical experts.  It was helpful to me in understanding more about this disease, and I hope it will be helpful to you.  There are also several discussions on TNBC on this site - feel free to use the Search engine in the Discussion Forums tab to find some good conversations on this topic.

Don't hesitate to send me a private message and friend request, if you wish.  I am happy to answer your questions and be your cheering squad.

Ann (ashcon)
Attached files

Re: New breast cancer diagnosis

Posted by Diana BC on Feb 20, 2019 9:07 pm

Thanks so much ashcon‍, irishchick‍, Essjay‍.  I really appreciated the information you shared.   I didn’t sleep much last night as yesterday was whenI got the news about tripleerq negative.   It sure pays to get informed.   Can’t you thank you enough.  I just might sleep tonight.

Also I think I did this all wrong...I’m supposed to introduce myself first.  So I will go and do that in the right section.  I’m learning how this all works.  So grateful this site exists.    
:-)

Re: New breast cancer diagnosis

Posted by Shari on Feb 22, 2019 5:41 pm

Minus2:
Hi Shari‍ , 
I remember reading your posts about whether or not to take Tamoxifen.  I know most of us have to investigate the benefits and risks of meds we are prescribed in order to wrap our heads around it.  If you don't mind me asking, what was the thing that led you to decide to take Tamoxifen?  I am always interested to hear other's thoughts.

When I first started on it I was very concerned about side effects.  They haven't happened, and even following a hysterectomy and bilateral oophorectomy, I have elected to stay on the Tamoxifen rather than switch to an AI.  

 

Re: New breast cancer diagnosis

Posted by Sam67 on Feb 25, 2019 3:54 pm

Hi Diane BC I am also triple negative and was scared to learn about having breast cancer. I had 8 rounds of chemo every two weeks. Tomorrow I will have a bilateral mastectomy with expanders. Once I heal from that I will have 25 rounds of radiation. You will get through this just like I am. You will have good and bad days so don't get discouraged on your bad days, we all have them. Just know that your cancer team is there for you.  My chemo worked to shrink my tumours that I found in my lymph nodes quickly which gave me hope that the treatments were working and doing what they were supposed to do. 
Let your family and friends help you while you are going through this, if they offer to make meals take the help. You will have days that you will be thankful for the food you didn't have to make. Try and have someone with you at your appointments to get any of the information that you might miss. I found this really helpful during chemo as I did have chemo fog brain and couldn't take in all the information that was told to me.
hope. You get some answers soon.