Decision about adjuvant chemo

Hi KB,

I had a similar dilemma to you as my 10 year difference was 4%, and my oncologist thought I was a good candidate for the Optima trial,  where half of women have their tumours assessed an if low risk not given chemo. I came back as chemo group and she thinks I was probably randomised there.  

I eventually went with thr chemo based on the difference between average number still alive after 10 years (in my case 93) compared to those alive with none,  2nd generation and 3rd generation chemo.  I converted that to a fraction. For me at 10 years that meant I had a 1/17 chance of dying from my cancer with 3rd gen chemo,  1/14 chance of dying with 2nd gen  and 1/11 chance with none.  At 15 years the figures were 1/12, 1/11, 1/8. When first diagnosed I wondered why they don't use the 15 year figures,  but to be honest they are probably out of date and medicine has moved forward,  and this will accelerate in the next few years. I'm not sure if I'll stop after ther EC or try the Paclitaxel as well,  as I'm worried about the peripheral neuropathy, as well as putting my heart under more strain when I'm going for a DIEP reconstruction next summer, but have another two EC to go still so will see. 

Once thing not on ther Predict calculator is if there is LVI (lympho vascular invasion) or not.  That's a big factor! My pathology report said there was none.  You need to check,  as if there is then ther cancer had gone into the vascular system and could have spread directly into the blood stream.  I know of women who are stage 4 with no node involvement but LVI.

Good luck with whatever you decide, and go get Bill!l x

Hi KB

I am 39 and have just finished treatment (all except ovary removal next month and hormone treatment )

My oncologist didn’t mention the results being poor for the under 50’s and did use the Oncotype test. I was adamant from the beginning that I wasn’t going to put myself and my family through chemo. My tumour was small but grade 3, removed with clear margins first time round with no lymph involvement. 

The onco test came back with a score of 27 - the cut off apparently is 26. (26 or above chemo is recommended) I thought about this long and hard and in the end decided to endure the chemo. I felt that although the percentages were quite low the percentages of me getting this in the first place were even lower having no risk factors what so ever. 

Having come out the other side - the end of treatment is harder than I imagined - mentally. So personally I am so glad I made the chemo choice. I have thrown everything possible at this awful disease to prevent it returning and if I hadn’t I’m not sure I could cope with the nagging fear. 

It is a really tough decision and only one you can make. Whatever you decide I wish you the all the very best.

Beans xxx 

Hi KB, I was petrified about having chemo & like u I was only focusing on reasons why not to put myself through all that, but I was strongly advise to have 6 cycles chemo called FEC-T. I can honestly say it wasn’t as brutal I thought, couple of hours once every 3 weeks is tolerable. Hair loss was really hard to accept, but there’s ways of preventing that now. There’s medications & ways to help with the majority of side effects, I personally think if u are offered chemo it’s for a good reason not a off chance. It’s such a tough decision I wish u all best.. Vicki x

Hi Beans

Thanks for the reply. 

You are very courageous for making that decision.

And I am pleased to hear that you have come out on the other side with a positive take on things.

I am very scared of all the side effects, and losing my hair which is an unmistakeable part of my character. 

I also live alone so will have to face a lot of this on my own. Big decisions! 

All the best of luck to you for your future  treatment.

Keep up the positivity!

KB xxx

Hi Vicki

Yes, petrified is exactly the right word!!! But it is encouraging to hear that you have not found it that horrible. 

Have you finished your trearment now?

KB x

Hi KB 

I'm in a very similar age and situation to you. At my review following the lumpectomy I found out that i would be having the OTDX (hadn't heard of that prior to the review). I came away from the meeting with mixed emotions, I should have been really happy that the offending cells had been removed and there was no evidence of cancer in the lymph nodes that had been removed but it was the first time during the whole process that anyone had suggested to me that chemo could be part of the process. (I had been expecting to go straight to radio-therapy based on what had previously ben communicated) so i actually came away more confused and concerned. 

I'm due to get the OTDX results on the 27th Aug and am trying to do as much reading as possible about the potential benefits and drawbacks of chemo but it is really difficult to understand given the amount of different drugs etc. i am really hoping for a score that indicates that is no benefit to me having chemo so i don't need to make the decision. I have the same loop going through my head of they have got everything so what would be the point to chemo to then well it occurred for a reason that i don't know so it might just as easily come back so should i do chemo. 

i just want to get started on whatever the next part of treatment is rather than waiting around but there isn't a lot i can do about that. 

When are you due to get your OTDX results? Fingers crossed you don't have to wait too long. x

Hiya, yeah I finished treatment beginning of last year. I was 31 when I was diagnosed & reality losing my hair was probably the worst bit, so I shaved my head 10 days into chemo while I had the choice. I got a great wig tho professionally styled, took a few of my close friends & made a day out of it we actually had a laugh trying different wigs on. My coping mechanism was denial try to laugh hard situation off, otherwise I would have cried. I know that’s really hard for some people to do, but it’s just me, the cat & my son who was in middle of his GCSEs at the time. I’m not ashamed to say I took cannabis oil after my 4th cycle of chemo, it give me an appetite & helped me sleep. Morphine would cause it’s own lot of side effects & u get enough medication without needing any more, I know everyone’s “journey” is different I can only speak from my experience.... vic xx

Hiya, yeah I finished treatment beginning of last year. I was 31 when I was diagnosed & reality losing my hair was probably the worst bit, so I shaved my head 10 days into chemo while I had the choice. I got a great wig tho professionally styled, took a few of my close friends & made a day out of it we actually had a laugh trying different wigs on. My coping mechanism was denial try to laugh hard situation off, otherwise I would have cried. I know that’s really hard for some people to do, but it’s just me, the cat & my son who was in middle of his GCSEs at the time. I’m not ashamed to say I took cannabis oil after my 4th cycle of chemo, it give me an appetite & helped me sleep. Morphine would cause it’s own lot of side effects & u get enough medication without needing any more, I know everyone’s “journey” is different I can only speak from my experience.... vic xx

Hi to Everyone. I’m 5 weeks post op from a lumpectomy all good there and lymph nodes clear yay!! I have HER+ Tripple Negative Grade 3. 

Now ready to go for chemo EC which I’m like others scared off. The picc line is making me feel sick as I worry about anything to do with needles, blood and veins. Has anyone gone through this and can tell me honestly how it was/felt? The chemo will be 3 weeks apart EC for first 3 sessions then Docetaxel? Stupidly the doctor told me not to read about this as it’s weeks down the line and not to scare me? Why  would you say that? 

The hair loss is another biggy  I am my hair normally  and now going to nothing is just adding to the worry  

If anyone can shed any light in the above I will be very appreciative ? 

JBxx

Hello

I see that although you have been a member of our community for a couple of months this is the first time you have posted. So can i first welcome you to the community. You will find lots of support and advice from people who understand what you are going through because they are either going through it themselves or like me have been through it.

Try not to worry too much about the EC the waiting for it is far the worse thing about it, after you're first one you will feel much better as you will know what to expect. You mention you will be having a PICC line, i didn't have one but i so wish i had. Once the PICC line is in you will be able t have everything done through there instead of having to have cannulas, blood tests etc 

I had the same chemotherapy as you and afterwards my cancer could no longer be seen on the MRI, it was 6cm originally, so the chemo did a fantastic job. Its going to scare you because its something new but after you've spoke to a few of us on here hopefully they will put your mind at rest a little. 

My hair was a major thing for me too, i'm not going to lie and say its easy because it isn't but again its the waiting for it to happen thats the worse thing. Once i'd actually lost mine it wasn't as bad as i thought it would be and i soon got use to it. 

A few hints for you, this group isn't very busy so go post in The breast cancer group there are lots more people in there to answer your questions and offer you advice and support. Also go look at August breast cancer chemotherapy chat group a new group is started every month but go introduce yourself ready for starting in September, there are lots of lovely ladies in there who are just starting or have already started their chemotherapy treatment.

One last post that you might find interesting is our wonderful wigs when i first found out i was having chemo i was adamant i would not get a wig as it would make me look like i had cancer, then a member of the community sent me a photo of herself in hers and i couldn't believe how amazing she looked, i went on to buy 2. Speak to your hospital they will hopefully be able to give you the address for the best place to get a wig from near you and you may also be able to get a voucher towards the cost for one.

Keep posting and talking to us, you can and you will do this.