Anyone not taking chemo ?

Alola

I was diagnose with breast cancer on my left breast and went for operation on 30 March, and one of the 3 sentinel notes taken has cancer. So I went  for the second operation to take more the lymph node, and the result is clear (4 lymph notes), 
I am diagnosed with : Lobular carcinoma grade2, stage 2,  12 mm cancer, ER3+ 90%, PR2+ 2%, Her2-, Ki 67/MK167 20%

My oncologist said I have option to go OR skip the chemo for my treatment. To determine it, I took the endopredict test.
If the test is low risk  (of distant cancer"'s recurrence)  I don"t need Chemo but only doing radiotherapy and taking hormone tablet for 6 years.

I am waiting for the result, and nervous. Whether it is safe for not taking Chemo if the endopredict test is "low risk"??
I have discussed it with my surgeon and she said if it is low risk, the chemo will not be beneficial to me.
I am confuse and nervous ( make me depressed and sad),  should I  take chemo or not , considering its side effects
Which direction should i go, in order I can make right decision and will not regret. 

Anyone has the same experience as mine? 

primek

Well all looks good so far and the predict test will be much more definitive of the benefits. If low then hormone suppression will be enough with regular screening.
 If the team really believed you should have chemo they would have urged you to do so. The decision though is yours. We all worry that we made the right choices. But you have done this next test so you will be making the most informed decision.

Take care. Kath x

primek

@socoda You may be able to share your experience with this lady.

melclarity

You really have to be guided by your Specialists, as Kath said, they absolutely would tell you what the recommend. Your diagnosis is so important in determining whether or not you need to. I had a different diagnosis with IDC ER+ Stage 2 Grade 3 so very different. Hopefully some other ladies can jump in who have a similar diagnosis. Hugs Melinda xo

socoda

Thanks @primek . Hi @Alola - Kath asked if I could share my experience with you and I certainly can. Last June I had a single skin and nipple sparing mastectomy which came back as Er+, Pr+, Her2-, Stage 2 Grade 1 cancer. I had four nodes removed all clear. When I went to my oncologist she told me I could have my breast tissue sent to America to see what my recurrence level might be. At that point in time they were classing my recurrence level as low. If it came back as high I would be having chemotherapy. I asked what would happen if it came back middle range and my oncologist told me she actually wasn't sure what would happen then but we would look at options if it occurred. So as they had already classed me as low chance of recurrence without the testing I decided to just not have the testing which meant no chemo. I also didn't have to have radiotherapy due to having had a full mastectomy. So I am currently on Tamoxifen for the next how every many years with no other treatment. I was a bit frightened at first as I thought that I was being left out of necessary treatment but it was explained to me that the chemo and radiotherapy would actually do more damage to my body. The hormone therapy is to starve any microscopic cancer cells so the cells can't grow. (Sometimes the hormone treatment doesn't work but its the best course of action). So I am quite happy to just be on my hormone therapy. I also consider myself very lucky not to have had chemo. Rest assured that your team of oncologist and radiotherapist are going to do their best for you and if they feel that chemo is not necessary for you it is because they truly believe that they are giving you the best course of treatment for your individual needs.   Big hugs to you. Xx Cath

Alola

Thanks to Kath, Melinda and Cath for your supportive posts which help me to cool down and think
a little bid clearly, even though I am still  nervous waiting for the result. 
 I will discuss with my oncologist again prior to my treatment, so i will have peace of mind.

 

AineG

Hi @Alola  
Mine was somewhat similar to you, I had ductal carcinoma grade 2, stage 2b,  40 mm IDC, ER3+ 95%, PR2+95%, Her2-, Ki 67 5%.   along with various dcis .  one node only affected.  So My Ki67 was a bit lower than yours hence, for you the extra test will help.  Like you I was a bit nervous Not to be given chemo as that's what we've all heard about for cancer treatment, but one of my team explained the ki67 indicator has only been around 5 or 6 years and shows whether or not you will respond to chemo as a treatment.  in some cases you hormone therapy is enough.   
As primek said, IF chemo was deemed beneficial your team would encourage you.  remember treatments, both chemo and non chemo treatments have come a long way.
Like Socoda, at this stage I feel very lucky I didn't have to have chemo. I can only imagine that 5 years ago I would have been given chemo for mine, but and am very glad for a test that could tell me in advance that it wasn't going to be beneficial for my type of cancer.
your test results and your team will guide you to the best outcome.
Aine

Alola

Thanks a lot Aine, its a relieve to read your experience which is similar to me.  
 
How long ago had you been diagnosed with cancer. 
I will get my test results  sometimes next week.

Alola

melclarity

@Socoda Cath thanks for sharing your story, that's interesting! I actually think your treatment is spot on for your diagnosis. Interesting about the skin test for recurrence, I hadn't heard of that before. You know I don't get this Breast Cancer thing, I guess none of us do. But I don't get how I went from my 3rd year checkup all clear to my 4th year checkup with Stage 2 Grade 3 2.5cm Aggressive tumor. Knowing what I know now, I would have had a mastectomy/recon in 2011 and I believe would have beat a recurrence and wouldnt have had to do chemo. 

My Mum had BC at 40, mastectomy with NO TREATMENT in those days and lived 26 years passed away unrelated. Certainly interesting and in some ways, its more complex these days. So many of us don't have a choice with treatment, so we roll with what we have to do. 

After 6yrs I am so glad to be on my way to 2yrs clear for the 2nd time LOL. We wonder how on earth we will get through it all, but WOW do we!!! Nobody knows the depth or the courage it takes but all of us here! 

Melinda xo

AineG

Hi @Alola,  mine was diagnosed initially last July, with surgery in Aug.  I too take hope from colleagues who have been through the same, one of whom has just now hit the 5 year milestone.  it's certainly a journey.
Good luck with your test results and just make the decision that feels right for you.  There are no right and wrong answers no pass or fail!  just whatever makes you feel good.

I'm away this week, taking the kids to the Gold Coast for a "proper Aussie holiday"  Booked this just after the surgery to give us something to look forward to.  Hoping the weather stays good.
Good Luck

Aine

Alola

Hi Primex, Melclarity, Socoda and Aine,

On 21st April 2017, I finally got the result of my endropedic test, I was at low risk, so I didn't need Chemotherapy. 
EPclin Score             : 3.2  
Epclin 10 years risk  : 9%
Epclin class              : Low risk           Low risk is ,4      Hight risk is >3.4
I just finished my radiotherapy (25 x) last Wed, June 7, and will start my Letrozole tablet 2.5 mg in 2 or 3 week time

It is an emotional journey, and thanks for your support that helped me stay strong to face this cancer.
I did whatever I could  to protect myself  against  this cancer, the rest I leave it to God.

Please have a nice weekend, May God Bless you all.

Alola

Cassina

Alola, I was also told you do not need chemo, but have it just in case! which was frustrating as I did not want it, even the radio guy said, why did you have chemo? so I think often they do not know. Chemo is aweful but much improved on nowdays so do not fear it,It does seem to give you a better chance of any stray cells ( following surgery) and prior to radiotherapy but I think they just try to give the best chance of cancer not returning

primek

@Alola great news on the result. Wonderful to hear of another bc sister who doesn't need the chemo, and you have made the best informed choice you could. I had some ankle and hand pain initially on letrozole but that is virtually unnoticeable now 8 months on. I hope the same for you. Most importantly ensure you have regularly bone density scans.. annual ...due to the letrozole risks, but know there is treatment. Now the hard road of survivorship starts for you, where we figure out how to reclaim our lives and feel safe again. Kath x

Cyclo

My diagnosis was a bit different but one lymph had cancer and subsequent axillary dissection revealed no cancer in the lymphs that were taken. Initially the oncologist thought I would need chemo and radiotherapy but I had the prosigna test ($3000. Non rebateable!) the statistics showed that I had an 86% chance of cancer not coming back and 14% of it returning. The onco advised that there would only be a increased benefit of 3% if I had chemo and didn't recommend it . I jumped at the chance of not having chemo and never spent another second thinking about it. I did have radio and that was debilitating enough so I was happy to have one less treatment to my body.  My advice is to follow what  the medicos advise.  Ps despite spending 3k the onco said no guarantee it would not return and I guess that's something we all live with. Lyn 

Hopes_and_Dreams

Hi @Alola, great news that you don't need chemo. I was also lucky and didn't need chemo. My oncologist explained that as my cancer was grade 1 the cells were slow growing and wouldn't respond to chemo. He felt confident that as I had a mastectomy with clear margins and no lymph node involved it wasn't necessary - let's hope he was right. I do understand that niggling doubt but I have to have confidence that my medical team looks at me as an individual and has made the right decision based on my results. My cancer was 100% ER/PR so I am taking Arimidex which should further reduce my risk of recurrence. I'm 10 months on and pretty much side effect free.
Wishing you all the best Alola, Jane xx

melclarity

@Alola that's great news! so happy to hear that, you have to be guided by your Specialists as they know you're exact diagnosis and what treatment fits you. x Melinda