Do you afraid from recurrence?!!!!!!!

Danaqtr

Stage 1 who skipped chemo.. Do you have this fear from recurrence even if your cancer is low risk such as low score in ki67 or you living normal without thinking negatively?

How is your regular check ups? Do you do mammogram every 6 months? Ultrasound? Do you eat more healthy?

Please share your story and your emotions after finishing tr

AliceBastable

If your numbers from oncotype or other tests are low, not only do you not need chemo, but it would probably do more harm than good.

Raysal

I'm afraid of recurrence whether I do chemo or not.. also since I'm under 40 (34 years old) I'm worried if I don't hit my cancer aggressively I'll end up with Mets.. I still don't know what my treatment plan holds but my dr thinks it will probably be rads and hormone therapy..

I guess at some point we just have to let go and hope for the best and try to live our life.. have faith in our doctors and medical system. no point in worrying about the uncontrollable and gravitating negative thoughts.. really hard to do so, but I'm trying to live the moment than worry about the unknown..

CindyNY

On one hand, I believe I'll be cancer free. Then that little nagging feeling way way in the back of my mind says that more than likely a cancer will show up in my lifetime. I don't fixate on it, I live my life taking that little AI pill daily and hope that medical research in the future will keep us all safe.

Meow13

I too hope the future holds better treatment just in case it comes back.

bluepearl

First time around, I worried obsessively. Second time around, I realized worrying didn't do a damned thing to prevent it.. Live your days and don't let cancer steal them away from you by worrying.

AliceBastable

I'm on my third type of cancer, fourth if you count basal cell, which is mostly just annoying, unless it gets messy like one of mine did. For some reason, I don't worry or freak out about cancer (I did a little with the first one ten years ago). If/when it shows up, I just get it taken care of like I would with any other medical issue. But I haven't had a Round Two of any but the basal cell, so I don't know how I'd feel about a recurrence.

LJDH0709

Fear of recurrence is normal under these circumstances....everyone really to some extent is afraid of a recurrence

You are not alone!

asknomore2

At first I was told I would only need surgery and radiation if my margins and lymph nodes were clear and the were negative. I was shocked when I was told I need to see an Oncologist for Chemotherapy because I was triple HER 2 +. I had a major meltdown in my surgeon office. I wasn’t going to do chemo.The radiologist explained it to me like this: She said think of a glass shattering on the floor. Surgery picks up the big pieces you can see. Radiation and chemotherapy wipes up all the microscopic pieces you can’t see. I finally consented to Chemotherapy. For the most part I don’t think about a recurrence and out of nowhere when I ‘m thinking about life after treatments I get a what if moment. What if it comes back?? I have let it go. I would be crazy with the what if’s.

Lily55

Stage 3 and refused chemo.....6 years ago, so far no recurrence

Pi-Xi

The short answer is yes, I fear recurrence. The good news is that after two years my thought patterns are normalizing. I do find that at times when I'm really enjoying myself or making future plans, I have to catch my breath. The dark thoughts run through my mind.

Snickersmom

I don't think there are too many who don't worry about it coming back. I'm 18 months out and it finally has lessened a bit but still, that little "c" is in the back of my mind, lurking. At first I was totally obsessed, but I'm finding that the more time that goes by, the better I feel emotionally. Because of the size of my tumor and the fact that no lymph nodes were involved, they felt chemo and radiation would probably do more harm than good and I would not benefit from either. So I am on AI for 3-5 years instead. I begged and pleaded with my MO to please do any kind of tests to make me feel better about it and so he was able to push through a nuclear bone scan and nuclear MRI, both of which were clear. So I have now been able to pretty much push the nasties out of my brain and live my life without the horrible fear. My biggest problem continues to be the psychological issues, but that's for another day!!

LJDH0709

I just got over a recurrence.  My mastectomy was 2013, recurrence occurred  inthe  incision 

scar this past March,  From that point through July underwent a lumpectomy and 28 rounds of radiation to chest wall and many many tests.

Now I am feeling pain that is waking me up in the exact spot where the 2nd tumor was removed back in May.

They did an ultrasound 2 weeks ago and found only a thickened area, but this is happening on and off.  Talked to the oncologist and he said sometimes after radiation you can get pains, but this is so exact and so long after treatment, I m getting a little worried. Anyone had anything like this happen to them?Any suggestions.  Thinking of asking for another type of test if available from my onc. if this continues next week.

Meow13

It sure doesn't help to know even 10, 20 years out the risk is still fairly high for recurrence. I am sick of it really sick of the threat. My oncologist acts like it is almost certain it will come back. I still am so glad I didn't do chemo.

Disgusted by how little is really known as far as a cure or prevention.

dtad

Meow...agreed!!

Nas

Lily55,

You are a great proof that chemo is not a guarantee.....for all people who had chemo after surgery there is no way to measure if chemo have worked or not, but you are a proof that its not about chemo. As lots of people with zero lymph node doing chemo and still end up with recurrence, chemo is not curing for sure, if not nobody would die from cancer, we definitely need better medication....

Nas

Meow,
This threat is for everyone, 5 years ago when my second cousin was diagnosed with stage 3c triple negative breast cancer I was 33 yeaes old and was thinking about getting my first check up after my 40th, last year at age 38 I was diagnosed, earlier than what I was expecting, my point is that no one, but no one is safe, we are all at the risk of developing any type of cancer at any stage of our lives, so good to find it now and at this stage, tomorrow??? Who can promise it even for our doctors???? There is no guarantee in this life.. Last week my aunt who was crying over my diagnosis, had a car accident and is in coma, me and my second cousin are still alive and healthy....

pupmom

My docs at an NCI hospital recommended no chemo (Oncotype 14). I trust the medical professionals.

CindyNY

Prior to dx I always thought I'd wait to take SS until I was 70. Post dx, with the "I don't know when it will return" I'm leaning towards taking SS at 62. The "return" factors into so much of living life.

Nas

popmum, do you remember your er and pr percentage???

Annieplaysguitar

Hi there, I'm wondering if I can ask a question about that post.  I'm from BC, Canada and was lucky to have had my sample sent to California for the Oncotype test as we don't yet have that here in Canada.  I had a left lumpectomy in Sept 2018, 25 mm tumor and 2 positive nodes.  One node was barely tracible - they were both well encapsulated.  My Oncotype score came back today at 14, but my Oncologist is saying that I should have Chemo still.  I'm 52.  I don't think I have the information you ladies may have, as I see you are talking about graphs etc....  Could you share that information with me.  I want to do the right thing for my body - all the information I am finding is on the breast only and not for node positive - and the grey area I keep reading about is where I am at 14.  They are saying the grey area is from 11-18.  Can anyone share helpful information with me.  I would love some help.  Thank you so much

CindyNY

Annieplays - you can contact the OncotypeDX lab directly and they can send you the full report. It includes a lot of information, including a graph showing where Low, Intermediate, and High Risk are and exactly where you are. Best of luck to you!

Genomic Health Inc US/Canada 1-866-ONCOTYPE. I had to fax a release form they emailed to me, included my drivers license copy as proof of identity.

GardenGirl11

Yes, I’m definitely afraid of a reoccurrence but I don’t let it stop me from living my life. I’ve been cancer free for a year and I think as more time goes by the less afraid I am. I do try to eat right and stay active. My thinking went from the worst to being glad that I get to wake up each day. It will change you and for me it was for the better.

AliceBastable

I've seen some posts that seem to imply that chemo and radiation are preventive. In a sense they are, as they clean up any lingering bits left after surgery - radiation in the breast (and nodes, if appropriate), and chemo body-wide. But I don't think they are necessarily preventive for a recurrence; that is the job of hormone suppressors for er/pr positive tumors. I think the best chemo and radiation can do is leave us as clean as possible going forward.

LinnyG

9 weeks out from L mastectomy with TE. Oncotype score 2 so no chemo. Whew....right? Well, I'm due for exchange and reduction/lift on other side 12/12 and now I'm concerned that 'it' will be found on that side. I had mucinous, which has low recurrence. But concerned it spread or that there's nother type lurking in there. I've posted my concern on another thread and sounds like this is a 'normal' concern, whatever 'normal' is. Keeping busy, hoping to shut this out of my mind!! Thanks all!

ktab96

Yes its always in the back of my mind and I am seven years out!. I know a couple of women who had a recurrence after 10 years. Both had chemo and both were not on any adjunct therapy.

I am still on meds until I reach year 10 so I visit my Onc every six months. I have a mammo every year. I am considered intermediate risk. I did not have chemo.

SafetyGuy

I had a mastcetomy on 11/16 with the removal of a 18mm Stage 1A IDC tumor in my left breast. Still waiting on the ONCOTYPE score. However, during a pre-op CT a 9mm heterogenous nodule with associated calcifications was identified in the left lobe of my thyroid. I had an ultrasond of my thyroid 11/27. Two TR4 and two TR3 nodules were found. I am being scheduled for a fine needle biopsy of the TR4 nodules. Needless to say I am not as worried about reoccurence as having another primary cancer site.

HoneyBeaw

Safety guy

What do you mean by Tr3 and TR4 nodules. I two had my thyroid lit up on 2 different pet scan, after several test and ultra sounds it was determined that I simply had a enlarged thyroid and a couple nodules biggest one being 1 cm, which I can not feel at all . The Dr did not feel that they had any calcifications and was not cancer, I do follow- up yearly. PLease keep us updated on what you find out

sheyma

My dr said that recurrence was rare in patients who were similar to my diagnosis. Despite that, yes, I'm afraid from recurrence. Because I read here recurrence stories of patients who were diagnosis similar to me. And I know some patients who are worse off than me, (such as stage 3, or grade3 etc.) have no relapse or recurrence for nearly 20 years. I think that the likelihood of recurrence is predicted by statistics, but everyone's individual risk may be more or less.

I'm living three or six months episodes and I'm afraid when I feel any pain. I accepted the BC but I couldn't get used to it. I guess I will never get used to it.

(sorry for my grammar mistakes, ım not native)