TN Metastatic cancer fear

Hi Zoe-Lily and welcome to BCO.  Sorry you need to be here but you have found a great place for support.  It really is a devistating diagnosis to hear that you have BC and to hear that you are TN would make it even more difficult, but I would question your Docs 2 yr limit.  Yes I know TN is more difficult to treat but it is not impossible.  I am not TN but I'm sure there will be a lot of other ladies who are and will find your thread very soon and be able to reassure you.

Love n hugs.  Chrissy

Hi Zoe -Lilly. Im Tnbc I don't understand where your doc got 2 years ? I had stage 3 grade 3 and 5.4 tumor and I'm on my way to recovery finished Chemo in feb and rads may this year, I ain't going any where for many years ( hoping) to come

hi there, i am triple negative and have mets to lung. My reoccurance happended  6months post chemo. So yes i had a small gap but it is what it is. My cancer was extremely aggressive but If i beat it before I will beat it again.

The 2 year life span sounds riduculous-i'm sorry but clearly your doctor is not doing much research OR has minimal experience with TN patients. I have come across over 20 ladies on this website who are TN stage 4 and are going strong past the 2 year mark. No one has an expiry date- i could get run over by a bus tomorrow. The point I am trying to make is, is live each day to the fullest. Yes its unfortunate we have this disease but we have to take control of Cancer, not cancer take control of us. I am only 30 and theres no way im dying in 2 years- i have kids to adopt, get married and see the world. Be positive, be happy and keep smiling.

Zoe-Lily - this is a scary diagnosis, there is no way around it. I think the 40% your doctor quoted sounds a bit high given your stats, my MO told me I had a 35% chance of recurrence when I was initially diagnosed at Stage IIb/IIIa.



I am Stage IV, but my journey has not been typical in any way. I don't know what my life expectancy is, my doctors don't say and I don't ask. I make plans for the next three months, and live each day to the fullest. It has taken a lot of time to reach this level of acceptance, but I have, and my life is very fulfilling.



I would recommend taking charge of some things in your life that you can control and that can help you. Both diet and exercise have shown to be VERY beneficial for triple negatives in terms of preventing recurrence. One study showed that a low fat diet (under 20%) and exercise (5 hours a week) reduced recurrence by as much as 42%. So if you have a 40% chance of recurrence, these things could POTENTIALLY cut that down to 25% roughly. No guarantees of course, but there never are. Making these changes not only physically helps you, but gives you a mental boost as you are actually doing something, and that really helps.




I also found that researching and adding useful supplements to my diet helped me. For example, I eat blueberries every day, drink a lot of green tea, take vitamin D3 daily, etc. I don't go overboard, but I do try and maximize my nutrition. I feel like I am only helping myself this way.




Also, keep in mind that the further away from diagnosis you get, the better your odds. In fact, at 3 years out, your chances of recurrence drop to those of an ER+ person, and after 5 years, you have LESS chance of recurrence than ER+ patients.



Join us on the TN thread, you will see many women reaching their 3 year mark, with similar stats.



Hang in there!

I too was told 40% recurrence rate but that is without chemo. Chemo reduces risk of recurrence down to 15% according to my onco.

Zoe-Lily,

I have stage 3b cancer, with mets to my internal mammary glands. My radiation oncologist told me that by having radiation, my risk of recurrence would be reduced to 10%.  My RO is the Chair of Radiation Oncology at Dana Farber, and breast cancer is all he does.  If my risk of recurrence will be just 10%, then yours is probably not worse than that.  For me, chemo did its job and my PET/CT showed I am already NED.  So hang in there and try not to waste time thinking the worst might happen.  Also, if you do have a recurrence, it depends on where it happens. And remember that all these statistics are just averages and there is no way to predict what will happen to you personally.

Hugs to you,

Michelle

Luah,

BRCA + patients do not have higher recurrence risks but have higher risks new primary if no profilactic suergies are done. In fact, I read studies that BRCA patients respond better to chemo than BRCA negative patients.

tibet: Sorry... I confused recurrence with "BC again." Quite right and I've edited my earlier post. Thanks.

I also think your doctor's percentages were a bit high.  My doctor said more like a 30% chance of recurrence in the first 3-5 years after treatment (and that's what I've found in doing research as well.  But keep in mind that once we TNBC people are over the 5-year hump, our chances of recurrence drop down greatly to the same rate that estrogen+ women have.  Plus our chances after 5 years of getting cancer many years down the line are even less than theirs.  So there is some good news with this not very nice breast cancer.  Hang in there.  There are lots of here who are beating those percentages every year.  Good luck!

Well said Yellowdoglady! Don't let the stats get you down! I felt the same way you did last year and now I don't listen to anything regarding percentages. I am just trying to live a normal life. Yes, I am afraid of every little ache and pain, but have accepted that this is my new normal life. Unfortunately no one can predict whose cancer will return and whose will not. It's all a crapshoot! Try to enjoy your life, family and friends! It does get better-hang in there!!

Zoe-Lily,

While there isn't a standard since triple negative is so many variations, there are many chemo drugs that will help. I have been around for 4 years now and plan on seeing my children graduate from school. I was 2b when first diagnaosed.

 Pam 

Zoe-Lily, I have tnbc stage 3c. Took chemo, surgery and radiation. After all that I was told I still have cancer.  It has been two years and now I am facing the fact that it may have metastisized. I agree with all the others..each person has a different experience with this disease. I am having a biopsy next week to see if my cancer is active again.  I too am very scared but may I  recommend that you put your trust in God and seek your comfort through him. In all the posts I read not one mentioned God. I shoudl not be surprised but I am.  I am not religious but I am spiritual and I have found my  peace by putting my situation in his hands.  That is hard for me when I have always felt that I had control over my life and destiny but at this stage, I surrender and recognize I do not have the control of life. Thus, I have found solitude in having developed a relationship with God. He is there for us during these times. I am not preaching and to each their own.  But I am getting thru this and my fears by believing and trusting in God's will.

Zoe-Lily - I think your doctor was totally irresponsible giving you that two year comment. If my onc had told me that, I might not have had any treatment at all. As people have told you, everyone's experiences are different, but one thing is clear - TNBC responds better to traditional chemo than BC with target therapies. You are doing all the right things - keep doing them.



I dont come here much anymore. It's hard to believe right now, but after awhile you stop thinking about survival every five minutes. Sure fears come back every time a test is scheduled or a doctors appointment is looming, I had an awful time this week when the mammo tech went out to talk to the radiologist and didn't come back right away.



Your tumor is larger than mine was, and I had no nodes, but I was as overwhelmed as you are by all the dire predictions I read about TNBC. This group helped me get through the ordeal - good luck!

Zoe..I had 4 ac and 4 taxol..dose dense..no scans in between treatments.since your tumor is already removed..right..  I don't think they can tell if the chemo is working..or not. since your tumor is gone...the chemo is to kill any cancer cells that MAY still be floating around...the rads will clean up whatever may be left in your breast.

It kind stinks not knowing if the chemo is working..at the same point...your tumor is out of you...and that has to be a great relief...I just think that the oncs really don't know...

My onc said that with chemo/rads that my chances of reoccurence was down to 12%...I would like o% but whatever.

My SIL's onc compared it to the weather...would you take an umbrella if there was a 15% chance of rain..probably not...because it probably won't rain...take heart that you will probably be in the 80% plus group..that it won't rain..

and ditch your onc...

Zoe Lily,  all along my doctors have said "no scans" unless you develop symptoms. Yep, that is scary, but so are scans and waiting for scan results. I do blood work every four months, though my Onc suggested every six months, I requested the blood work every four months (sort of a securtiy blanket.) 

Having this disease has often made me feel like I'm walking on air, and the trick is: Don't look down. 

And yeah, ditch your onc.