Oncotype…..chemo?

[SL255]

Well I am rooting for you for good news and try not to worry too much, when will you hear? And rem on the forums most people when they get good news don’t tend to post so it can be overly pessimistic. I found that I was searching a lot of forums for people like myself to see what results they had and got more anxious when I couldn’t find people. They are there they just have been able to get on with their lives and most don’t go back to the forums. Best of luck and sending positive vibes 😊

[Pommy8]

No mastectomy 

[Pommy8]

Im like you thought all positive 8mm n dcis removed the 2 lymph nodes removed all clear so pleased after op as i thought thank god no chemo.

Then offered oncotype test dreading this coming week as im.sure they will be in as be 4 weeks feel sick everytime my mobile rings.

Only concern im a grade 3 k27 score is 58 so making me very nervous only a stage 1.

Definitely be having radiation and hormone tablet.

[SL255]

The waiting is dreadful and I was at my most stressed waiting for the oncotype to come back. I hear where you are coming from with the 2% chemo. Did you get a mastectomy too? Stage 1 and finding that little is really positive so wait to see what comes back. The other thing is age so the younger you are the more likely they are to recommend chemo. So under 50 or over 50.
Rooting for a positive result and in the meantime try and distract yourself as the stress of waiting is not good. Xx 

[Pommy8]

I am in a whirlwind also started with DCIS told very unlikely they will find cancer.

Went in for operation found 8mm cancer.

Told treatment would be radiation and hormone tablet from surgeon.

Needed to have lymph nodes removed it would be 2 and if clear no chemo if i woke up all removed i knew id be having chemo so pleased i woke up only 2 removed.

Next stop oncologist on the fence for chemo so sent for oncotype test so scared as these will be back next week.

Im stage 1 grade 3 k27 score 56%.

Chemo is only going to give me 2% extra that we know so far on maybe floaters .

I can't get in my head chemo does so much harm to your body to do this on a WHAT IF!

[SL255]

Hi there,

I was lucky that my Oncotype came back to say there was too little to measure and so no chemo.

It’s a very hard decision to make and incredibly stressful but the only thing I would say is think long term. I don’t know what I would have done if I was in a cut off point score so depends on what that score is? But I think if I was veering high I reluctantly would have gone through with chemo. But all depends on the score and also your oncologist’s advice. The very best of luck to you x 

[psteinb541]

I am planning to decline chemo. did you go through with it

[psteinb541]

Did you have chemo. I had great clinical results but just based on oncotype the y say chemo.  I can not wrap my head around it.

[SL255]

Thank you, I hope you are feeling better now and wishing you the very best for your follow on surgery. It is such a long road this journey and one that started for me with no symptoms just me thinking I would have a proactive mammogram little did I know  ❤️ 

[sharlea]

My tumour was 97mm, close to the chest wall. I had 6 nodes removed, all clear, and two cavity shaves to make sure margins were clear. It was grade 3. I don’t know exactly why Oncotype was suggested, was told they couldn’t make a decision if chemo would help based on the pathology results. the Oncotype results did show I would benefit.

I finished chemo, but only 4 out of 6 as toxicity outweighed benefits after fourth dose. Had radiotherapy due to cancer being so large and having positive LV (lympho vascular invasion). Chemo was a tough regime because I had already had the first choice FECT some years ago, so was on big dose Docetaxol, not fun.

I am now on Anastrazole, Bisphosphonates and Adcal tablets for five years. One to block hormones as ER+, one to help prevent bone secondaries and also strengthen bones, the last to help bone strength.

I am slowly regaining strength, and waiting for revision surgery sometime this summer, which is due to surgery complications not reconstruction.

Hope this helps a bit. Only your results will show if you will benefit, and by how much, and good discussions with your oncologist for the best way forward.

wishing you all the best, Sharlea 

[louby_lou69]

My tumour was 35mm.

I finished chemo nearly 4 weeks ago and now it's just a distant memory. I've had 3 radiotherapy treatments with two more to go next week.

For me, chemo was happening and the one week I didn't have it I was a wreck. My hair is starting to grow back and my energy levels are returning.

Whatever the outcome you will cope.

Lou. X

[SL255]

Hi 

I am in that terrible waiting time for an Oncotype test. Can I ask how big were your tumours or does it make a difference? I am strongly ER and PR positive and HER neg and grade 2.
0.5cm IDC - lymph nodes clear 

just want to see what my chances are? 

very worried it will come back high 

[sharlea]

Hello Lou,

I hope you’re recovering well from your lumpectomy.

I know, it’s difficult thinking about what might happen when you have chemo, but please try to ignore the tv representations. They do seem to mostly depict people who look ill, are feeling very sick and have lost their hair. This isn’t always true! It depends on your specific, individual and real chemo regime. Even a documentary may sensationalise.

I've just had my second chemo treatment, of Docetaxol and Cyclophosphamide, which was specific to my individual needs, having already had a lifetime dose of Epirubicin. Yes, my hair started falling out about 10 days ago, but headbands and little caps work well. I don’t look ill, probably due to the amazing array of pre meds and take home drugs. Yes, I did feel some of the specific side effects of the Docetaxol during the first week, but have been given three more take home drugs to help. One of which, liquid morphine, much stronger than expected, but better than codeine, and only on an as and when needed for musculoskeletal pains. Please note, you may not get this if your chemo regime is different, but you WILL receive plenty of drugs to combat any side effects, along with hotline numbers to phone if you feel at all unwell.

I had a lumpectomy in 1994, and the then “evil” chemo then obviously worked, but the side effects were grim. This time, after smx, for new primaries, not recurrence, the chemo and supporting drugs are so, so much better. I was really scared to go through it again, am maybe not exactly happy, but grateful and feel genuinely able to get through the treatment.

Wishing you all the best, and hope you have a good, informative and helpful discussion with your oncologist.

sharron, x

[Mrsmillie]

@louby_lou69 

Thanks for your reply.

Hope things are going well after your lumpectomy, I know it’s early days but hope things not too uncomfortable for you, try to keep up with the exercises when you feel ready.

I think I will be choosing to have the chemo, haven’t seen the oncologist yet, but I need to know in my own mind that I’m doing everything possible to avoid any reoccurrence…….I’ve been trying to prepare myself as best I can, but every time I hear of another possible side effect I’m buying whatever is needed to help with it, my ‘just in case’ cupboard is getting fuller by the day! I’ll certainly check out the book and you tube videos you suggested.

Take care, best wishes x

[louby_lou69]

@Mrsmillie 

Hi I had a lumpectomy on Monday and knew from my diagnosis date I'd be having chemo then radiotherapy.

It upset me so much, knowing I'd lost my hair, feel sick and look ill for weeks/months. Chemo is one of those things you see people on TV having and it just terrified me. But, the cancer terrifies me more.

So I started reading some blogs on the Macmillan forum, found some Instagram people to follow, joined a local cancer Facebook group and started to find out more about chemo and what to expect. I've made lists of what people suggest you need to buy in preparation and just educated myself and spoke to people  about how they coped.

I watched Victoria Derbyshire's Youtube videos and read The Complete Guide to Breast Cancer by Tris Greenhalgh & Liz O'Riordan - both are excellent preparation.

I hope you don't have to have chemo, but if you do, you'll know its for the best and you'll get through it

Lou x

[Mrsmillie]

Hi Jaybro,

Don’t apologise, nagging is fine ( and sometimes needed ) as long as it’s done with the right intentions in mind!

Best wishes to you xx

[Jaybro]

Mrsmillie

Opinion: There are no wimps in breast cancer (even if you feel a quivering wreck, that’s perfectly acceptable). Equally, I’d say there is no bravery. You said it yourself - we just have to get on with it, like it or not. There’s often a lot of language around cancer that is counter-productive. It makes us feel failures if we don’t live up to how we perceive other people to be coping. Forget the battle or the courageous journey. Don’t make comparisons. We’re all unique. Just get through it, use the support services available and get back to as similar a life as you had before this all started - at your own pace.

Sorry I sound a right nag. This is one of my hobbyhorses! Good luck xx

[Mrsmillie]

Hi AnnieV,

Yes, that’s exactly how I felt, first came the total relief that all results from surgery were clear, hormone meds for 5 years….. and then suddenly the oncotype test…..and now because high category of reoccurrence probably chemo…..but, hopefully  your results may of course come back low so you will not need chemo…..it’s the thought of another wait for results that does drag you back to square one for sure….I’m waiting to speak with oncologist and my anxiety increases every day!

Fingers crossed you get favourable results, keep in touch xx

[AnnieV]

Hi Mrsmillie

May I jump on this thread please. I just had a call from my consultant with the results of my surgery. My cancer has been regraded from grade 1 to grade 2 and it is 29mm tumour. In the treatment plan after surgery, I was expecting radiotherapy & tamoxifen & the need for chemo was thought to be low. Now I am having the oncotype DX recurrence test to work out if chemo would be beneficial. It’s hard to get my head round; my nodes are clear, there is no lymphovascular invasion, the tumour is removed but I still might need chemo. I feel like I have wandered into the dark unknown again & emotionally back to square 1 xx

[Mrsmillie]

Hi Jan,

Thank you for your reply.

I feel such a pathetic wimp, I just can’t get my head round the thought of chemo, think because it has been mentioned when I thought my treatment was sorted, then suddenly this will be an added extra! I wish I could face this as bravely as a lot of the people on this forum……anyway, I’ll know more when I speak with the oncologist and I’ll just have to get on with it 🙄 like it or not!

All the best with your continued treatment xx

[Jaybro]

Hi mrsmillie

You’re in good hands and your team will know what they are doing. Chemo sounds horrifying (TV perceptions don’t help). I’m one of the unlucky ones who has developed secondary cancer and when I was told my chemo would be taking numerous tablets daily, I almost cried. I really wanted IV treatment which i had first time round. It felt more nurturing rather than any DIY!

Some women sail through chemo. Some, like me, are riddled with side effects and utterly miserable. But it’s time limited. You know it will be over in x number of weeks and you’ll move on to radiotherapy where, again, women respond differently. I found it a doddle compared to chemo and had no side effects.

You will have your treatment spelled out for you and be given an information pack which tells you all the side effects. They’d be negligent if they didn’t, but it’s pretty alarming.  You soon get used to it. They give you a preliminary drip which includes a steroid, anti-emetic and antihistamine. This means you are unlikely to feel ill. After that, you get your chemo and you just have to keep yourself occupied without moving the cannula’d hand and setting your monitors bleeping. Then you have a quick saline drip to clean out the vein and you go home and wait and see how it affects you, accompanied by a goody bag from the pharmacy to counter each side effect.

It’s completely manageable- most of us have done it - and it’s definitely worth it. Diagnoses often change as they get more data (I had 4 diagnoses starting with  ‘I don’t think you have anything to worry about’ and ending with ‘We need to throw everything at it.’) and , as I said, I’d rather be having it now than my current treatment!

I wish you all the best

Jan x

[Mrsmillie]

Hi Sharlea,

Thank you so much for taking the time to reply.

I feel I really have to give myself the best possible outcome and if that has to involve chemo well I’ll have to do it……..so it’s some comfort to know it is doable! Wishing you well with your continued treatment xx

[sharlea]

Hello Mrsmillie,

I had a similar experience. The Oncotype DX test was recommended and my oncologist told me the results put me in the category where chemo would be of benefit. She reiterated that, as over 50 years old, any score over 26 would be in a category where chemo would be of benefit against recurrence.

She discussed what type of chemo I might be given (the regime) and gave me handouts of the potential side effects. She also told me that some women ask for chemo even if their score is below the threshold, and others make decisions she respects. I hope you are able to have a really good informative and reassuring discussion with your oncologist, they are there to help you.

I started my chemo mid July,, and whilst no picnic, it IS manageable. My second round is on Friday and I know it’s for the best. Wishing you all the best, and I know it’s difficult but please try not to worry too much, xx

[Mrsmillie]

Hello all, just looking for any advice from anyone who has been through a similar situation……I had mastectomy 4 weeks ago, lymph nodes and margins all clear so I presumed next would be hormone med which I felt quite at ease with….however, was then informed oncotype test would be done to determine next step….test result came back putting me in high risk of reoccurrence, so now facing possibility of chemo which quite frankly is causing my anxiety levels to rise again! Waiting for appointment with oncologist to discuss, but feeling very confused 😐 !!……Any words of advice welcome….thanks x