Fear of recurrence

LenaT

Although it will be 6 years in August since I was diagnosed with having triple negative breast cancer. I am still in fear of recurrence.  When I began radiation treatment for breast cancer, my radiation oncologist informed me that the tumor was very close to my bone and that is why I had to go through radiation treatment longer.  I was in stage 2, the grade of the tumor was a 3, and there was no cancer found in my lymph nodes.

I just had a bone scan in December, because of pain that i had been having in my bones, and the bone scan results were normal.  Although the bone scan results were normal.  My chemo oncologist stated that because the tumor was close to my bone, there is a possibility that cancer can return later in my bones.  He said that just because no cancer was found there on my last bone scan, does not mean that it won't show up later, especially if the tumor is slower growing. 

I just feel pretty down and just wondering are there anyone else here who is 5 years out and still in fear of recurrence?  I'm just finding it hard to move on with life.

LRM216

If it's any help to you, Lena, I am 4 years out, not 5, but yes, I am just as afraid of recurrence now as I was when first diagnosed.  I think I will always be.  I just had my 6 month onc check last week and got all the tumor mark results, blood testing, etc. results and all is still real good, but while that is good news, I am already dreading the next 6 month check up!  It's a truly crappy way to live, and from what I gather, there are many, many of us living this very same way.  I live my everday life just fine, and yes, it's a whole lot better than it was 3 years ago, but in the dark of each evening - as I lay in bed trying to sleep - it always creeps back into my mind.  Ugh!

LenaT

I thought after I reached the 5 year mark, the fear would go away, but I still feel the same as I did when I was first diagnosed with the disease. I guess the fear just never goes away.

Luah

It's true the risk never goes down to zero, but after 5 years, as you probably know, the risk of recurrence for TN drops dramatically. (Despite those stats, I think we all experience that dark, nasty anxiety from time to time). 

LenaT

The reason why I'm in so much fear of recurrence is because I am only 31 years old. I don't want to die at a young age due to breast cancer.  It is very hard dealing with this, especially at my age. 

Luah

Oh Lena, the lingering psychological effects of cancer just suck, especially for younger women like yourself. I think they are grossly underestimated by the medical establishment.  

While this forum can provide ideas and support, if your fear is constant and preventing you from enjoying life and moving on, I would urge you to look at a local support group or counselling... perhaps talk with your GP for a referral? You have so much living to do!   

yellowdoglady

If it is any help to you, you most probably will be just fine.  TNBC is a fast growing aggressive beast.  If you are here and well many years later, it was killed in you.  Yes, there are some people who fall outside the curve, but most of us don't, and the docs think they are the ones with a bit of + in the negative diagnosis.  I want to be normal now.  Most of us do once we get strong again.  And most of us are normal once we get strong again.  Celebrate you!  Each of us is able to move on if we can.  And if we can, we should.

teresa008

Well, that just scared the you-know-what out of me! At first they thought my tumor was positive, sent for the oncotype test after my mx, found out it was actually TN with, according to the oncologist, 1% estrogen positive. She said that, after my chemo, if I wanted to I could do the hormone treatment, just to be sure. I thought, 'all that for 1%??', but now I'm rethinking it, that's for sure!

LenaT

I'm just confused because when I saw my oncologist at my follow up appointment in August of 2012, he said to me that there was no need for me to see him anymore since i reached the five year mark and that my chances of recurrence was less than 5 % now since i'd reached the 5 year mark.  He said as long as I have a primary care doc following up with me, that would be fine.  But after he had given me the results of my bone scan that I had taken this past December, (which were normal) he now states that I should be seeing him every six months when he said that there was no need for me to see him again.  He says  just because my bone scan results are normal now, doesn't mean that cancer won't show up in the bones later, and recurrence of triple negative breast cancer is not uncommon of 5 years. That's why I feel so afraid.  I am just going to try and seek counseling to quell this fear that I am having.

teresa008

Your doc sounds a lot like my BS. She contradicted herself regularly. I finally figured out that she has these spiels in her head that come out of her mouth depending on the circumstance. If I interupt her to ask a question it gets her off her spiel and then she has to regroup and start again but it may be at a different point or with slightly different information. It can be frustrating, that's for sure.

netty46

My recurrence came back to breast after 12 years. They scanned me alot . So far it was in my breast. Last thing I heard CPR and Ned . Yes Same breast as 12 yrs back.

tibet

Hi Lena t, how are you? Saw your had a scare in march and just like to know how you are doing now.