Newly diagnosed..freaking out

Elaine_wi said:

Oncotype testing

Did your oncologist do an Oncotype test on your tumor after the mastectomy? The score determines the risk of reoccurence of cancer somewhere in your body. The lower the score the better. My score was a 6, which is very low. So my oncologist recommended only radiation and not chemo.

I had a double matectomy and had eleven lymph nodes removed because the left, sentinel node tested positive. From my understanding radiation, chemo and hormone drugs (Tamoxifen in my case) are preventative because there may be a few cancer cell still lingering and this prevents them from growing. Diagnostic imaging can't detect what's going on in every cell.

Remember, the treatment options recommended to you are your choice. Get second and third opinions if you don't feel right about what the doctors are telling you.

If I had been diagnosed just two years earlier than what I had been, the research at that time recommended both chemo and radiation. So medical science is not perfect and opinions keep changing. I am so grateful that I escaped the chemo experience! We can do a lot of preventative care on our own with a healthy lifestyle as well.

My cancer is also estrogen positive. The cancer feeds off estrogen and the drug Tamoxifen reduces estrogen production. I am suppossed to take it for the next ten years but I've temporarily stopped because I was getting severe mood swings. I will try to go back on it in a few weeks but I'm not going to continue if the side effects don't subside. We have to do our own research and make the best decisions for our individual life situations.

You came to the right place with your questions. Please keep posting a let us know how things are going. You are not alone!

 

Elaine, they usually do not do Oncotype testing on Triple Positive patients because this is aggressive type. All triple positive patients are recommended to have chemo, Hercpetin, and 10 years of hormone suppressors. Not fun.

No matter how much you trust your doc, get a second opinion.  It will reassure you. 

Hi:  Don't be freaked out. I am 59 and was diagnosed in 2016, was working part time. I am sorry you will still have to have chemo.  It is pretty bad although not everyone's body reacts the same way. I was stage 2 triple negative with no lymph node involvement. I had the Red Devil first(andryomycin I think is the real name), then taxol then carboplaten and 23 radiations.  I had a lumpectomy but am having a weird reaction near where they took out the lump.  The good thing (not that there really is a good thing) is that since you are a triple positive they can put you on hormones and the chance of recurrence is pretty much nothing. Please get a second opinion if you haven't already as you may find out some altervatives your current oncologist hasn't mentioned.  There is a lot of support on this website.  Go to the chatroom and try to stick with it. There are all types of cancer there but a lot of breast cancer.  Best of luck.  Sally

Hi. This is my first post anywhere talking about my experience.  I was diagnosed in March 2016 with triple positive breast cancer, stage 3. My lymph nodes were also affected.  I went through the series of 6 treatments, and herceptin for another 16.  Then mastectomy and finally radiation. Medicine is changing so quickly and I was fortunate 2 years ago with the advances.  I did make a lot of changes to my diet, and my routines because I do not like putting any medicines in my body.  I allowed the treatment to fight the disease, and used natural remedies to heal my body and mind.  By my last treatment, I did not have any cancer left in me.   

I know how you feel about being afraid, and worrried.  I used the power of prayer, family, friends and fought with everything I had.  I haven't stopped moving since, and haven't looked back.  I chose to have my ovaries removed (for other reasons) in August.  I was previously taking Tamoxifen, now on arimidex.   Whether you have a strong circle of support, or use the online community, always stay connected.  

Listen to your chemo nurse for any advice that she gives. I did a lot of research prior to my first chemo.  I bought 4 gallons of distilled water and starting the day after chemo, i would drink a gallon throughout each day for 4 days.  When I could, I would also soak in a hot tub with epsom salts each day. Eat as much fruit and vegetables as you can.  If I had any low counts from blood work, usualy magnesium, I would ask for a list of food to eat to increase the numbers.  I didn't want to take vitamins.  Immodium was my friend because after 5 days spent mostly in bed, I walked/hiked and did yoga as much as I could.  Both really helped me feel like I had a strong body.  

Good luck to you and everyone fighting the fight.  You are not alone. Treating triple positive breast cancer has come a long way and is very reassuring.  It sucks to go through and its very sad but you will feel like a warrier when you are done.  

When you have a chance let us know how you are doing. Love Surf

I was first diagnosed with anal cancer in Aug 2017... then because of my  career in science and medicine, I began checking out my overall health... in the course of my physicals and routine tests they then found breast cancer.  I had already been studying everything on cancer treatments as if my life depended on it ... knowing more and reading the papers that the doctors should be reading... their journals, National Institute of Health papers, Mayo Clinic, MD Anderson, and so on... I rejected the biopsies they tried to harrass me into.  I rejected the contrast media.  The MRI without contrast showed them plenty and just that MRI caused me two entire days of agony and bleeding from my anal cancer.  I have many other friends and relatives that have undergone cancer / chemo / radiation treatments and the side effects run the gamut of chemo brain, loss of hearing, necrosis (death) of tissues radiated... stenosis (narrowing of openings) from radiation, heart problems from the chemo, mucositis, ulcers in the mouth, burns of any area radiated, burning the esophagus even in my Dad (then he could not eat)... FOUR pages of side effects... and you don't get to pick which ones happen to you.  The doctors purposely do not inform people about the numerous horrific side effects.  With the breast cancer they often don't bring up the lymphedema (but the hospital that performed my mammogram brags about treating four thousand women last year alone for lymphedema... I do not see this as taking care of the patients in a responsible manner)... I personally am taking the wait and see approach while trying alternative therapies because the breast cancer is small and my anal cancer is the big problem.  The doctors do not know what will happen if you don't accept their treatments but I DO know what will happen if I sign up for their chemo/radiation... I will be in and out of the hospital... sick, sickly, weak, suffering and I refuse to do this to myself or to my family in the guise of "treatment".  

I pray for everyone that has to make these decisions.  It is mentally and physically exhausting and if you don't believe in what your doctors are wanting to do to you ... you can speak up and refuse to accept their "standard protocol"... With my studying everything I can get my hands on and taking copies of these papers in to show my doctors... I have avoided much ... the best overall test was the PET scan... that did not make me sick and caused me NO pain.  They saw everything they needed to see and at this time I am receiving palliative care...

Prescriptions for Immodium and Lomotil for my incontinence.  Flexaril to stop the spasms when they occur.  And... I just found out my doctor can write a prescription for my incontinence needs and they will be shipped to my home free of charge.  

I still work and I take care of my eighty two year old mother and my days typically run from six a.m. until ten p.m.  May of this year will be one year since my symptoms began.

May God bless everyone that has to decide what to do once diagnosed with any cancer.  It is a cruel journey.  Make sure to be around people that you love and those that will help you when you need help.  We all need that the most ALWAYS : )

Spins said:

stay positive

Hi. This is my first post anywhere talking about my experience.  I was diagnosed in March 2016 with triple positive breast cancer, stage 3. My lymph nodes were also affected.  I went through the series of 6 treatments, and herceptin for another 16.  Then mastectomy and finally radiation. Medicine is changing so quickly and I was fortunate 2 years ago with the advances.  I did make a lot of changes to my diet, and my routines because I do not like putting any medicines in my body.  I allowed the treatment to fight the disease, and used natural remedies to heal my body and mind.  By my last treatment, I did not have any cancer left in me.   

I know how you feel about being afraid, and worrried.  I used the power of prayer, family, friends and fought with everything I had.  I haven't stopped moving since, and haven't looked back.  I chose to have my ovaries removed (for other reasons) in August.  I was previously taking Tamoxifen, now on arimidex.   Whether you have a strong circle of support, or use the online community, always stay connected.  

 

Listen to your chemo nurse for any advice that she gives. I did a lot of research prior to my first chemo.  I bought 4 gallons of distilled water and starting the day after chemo, i would drink a gallon throughout each day for 4 days.  When I could, I would also soak in a hot tub with epsom salts each day. Eat as much fruit and vegetables as you can.  If I had any low counts from blood work, usualy magnesium, I would ask for a list of food to eat to increase the numbers.  I didn't want to take vitamins.  Immodium was my friend because after 5 days spent mostly in bed, I walked/hiked and did yoga as much as I could.  Both really helped me feel like I had a strong body.  

 

Good luck to you and everyone fighting the fight.  You are not alone. Treating triple positive breast cancer has come a long way and is very reassuring.  It sucks to go through and its very sad but you will feel like a warrier when you are done.  

I thought that was bad for the kidneys? 

Just finished 16 rounds of chemo. 4 AC & 12 taxol. More side effects than I imagined I would get. Still suffering with congestion-neuropathy - continued nail problems on toes and hands that have caused infections- on antibiotics twice- among all the other medications to treat symptoms -list goes on.  Now seeing surgeon to go over new tests and prepare for my surgery as a triple positive that spread to the lymph nodes. Then of course radiation and tamoxifen for 10 years. This is all so scary and my new normal which I can only take one day at a time.  Would feel better if the side effects of chemo subsided soon - especially before surgery. 

I had chemo, MX & radiation & glad I did. I was stage 3A. I'm on Tamoxifen & had my 3 year anniversary a few months ago. I believe my treatments kept me from being stage 4 now. You are HER2 positive, that's very aggressive. They have chemo & meds for it, why wouldn't you treat it agressivly? Chemo wasn't as bad as I expected. 

jnickele said:

Amazing Peer Support Resources!!

My name is Julie and my mom had Stage 4 HER- Metastatic Breast Cancer when I was 19 (about a year and a half ago). My mom first got diagnosed with Stage 2 Breast Cancer when I was in 4th grade and then a week before leaving for college, my mom was again diagnosed with stage 4 Metastatic Breast Cancer. 

Considering where you said you are emotionally and just because it helped my mom and me so much, I wanted to share a little about a non profit organization called Imerman Angels for your sake as well in hopes that it might be a good, free resource to remind you in another way that you're not alone. It's free peer-to-peer cancer support where you get matched with a 'Mentor Angel' that would be another patient around your age in a similar life/work/family situation with the same stage, type and similar treatments and options. You can communicate as little or as much as you want to with a Mentor Angel. My Mentor Angel has been a blessing for me. She was also the youngest daughter of a mother who had the same type and stage of cancer with the same treatments, similar side effects and was trying to handle caregiving while also trying to be a normal college student. She was such an incredible person and insiration that I became a Mentor Angel to another daughter.

This is one of the BEST cancer resources I've found so far. Anyone who has endured cancer is welcome and invited to become a Mentor Angel, which has been really healing for me. Everyone on this page seems awesome so I just wanted to provide that info so that you know it exists because I wish I had known the option was there even earlier than I did.

Here's the link for requesting support if you want it: https://imermanangels.org/get-support/

You can also find the 'Become a Mentor' option on their website.

I'd be happy to talk to anyone further about that support if you have questions and obviously about my own journey. Again, I'm offering it up because it truly provided understanding and relief in a unique way. 

Sending prayers your way!

Thanks for the info - I joined the other day and have been in touch with my "Angel".  We all need all the support we can get.  Grateful, thanks again.  Kat.