Hi everyone, this is my first post on here and I just wanted to get some feedback.
I had a routine mammogram in February then called back for ultrasound and biopsy’s in March. They told me then it appeared cancerous. This was confirmed by breast cancer nurses the day before we were due to go on holiday and op booked to remove mass and sentinel node for beginning of May. All went well, healed brilliantly then in for results. Margins not clear and sentinel node cancer found. Second op booked for superior margin removal and 14 lymph nodes removed. In again for results and fabulous margins clear and no cancer in any other lymph nodes.
My confusion now is I’m being told I should have chemotherapy before my radiotherapy (I knew I was going to have to have radiotherapy) for preventative measures. I thought I was going to be offered the Onco test but no been asked if I’d like to be part of a trial. And reading all this about chemo and its side effects and just wondering why I should do chemo I am so confused. My prediction-score for doing nothing was 84 - with hormone blockers up to 87, with chemo 93 and then up to 94 with bisphosphonate. To be told you’re cancer free but still have to do chemo and radiotherapy is confusing the hell out of me and the bisphosphonate and hormone blockers don’t sound good either. Just confused and not sure who to ask and what the right questions are for oncologist. Thanks so much.
Oooow poor you, I can feel your confusion Maybe you can have a second opinion? And ask both your recent and the other doctor to explain to you in an understandable way why they recommend the chemotherapy. I mean what exactly it should do in your body. I had an unilateral mastectomy 7 years ago, clean lymphs, and no chemo or radiation, only Tamoxifen. But of course you can’t compare the one person with the other, there are so many kind of cancer cells and medical histories, everyone needs a custom-made treatment. Wishing you all the best! Barbara
My oncologist said there is no sense in doing Oncotype if in any lymph nodes and chemo is generally advised. I’d take it and run with it 5% is not to be sniffed at. People take Abemaciclib for 2 years and endure horrific side effects for a 4-5% uplift. Chemo is hard but it’s brief in the whole scheme of things compared to some other options.
The reason chemo is sometimes suggested for breast cancer without signs of distant spread is because quite frankly it’s a sneakier cancer than most. It has a tendency for cells to escape from the main tumor and enter the bloodstream way before detection. And when that happens there is the possibility for a later metastasis. In fact, for the hormone positive breast cancer distance recurrences can happen up to 30 years after the original diagnosis. So if you’re young and the lymph nodes positive sometimes that’s all they need to know in deciding chemo is going to be useful. After all if the lymph node is positive it means your cancer wanted to travel. And if it wanted to travel there is the possibility that it did so chemo hopefully will kill those errant cells before they have a chance to multiple and form another tumor elsewhere making you thereby a stage 4 patient. My lymph nodes were clear with positive margins and I had to have chemo myself. It wasn’t fun but I got through it and made a complete recovery.
As soon as they found it my lymph nodes (2/16) I was told I’d need chemo. If you can go on optima trial, theres a chance that you will be in the group that escapes chemo as their reoccurrence chance is low after the prosigna test is spplied. But as others have said, your predict percentages indicate that chemo will raise your prognosis a lot. If you decline chemo, and it comes back, will you regret that decision? Whatever you decide, good luck. X
Same here … 2 positive nodes and am now having chemo. Every part of me wanted to run for the hills after my mastectomy and full node removal … but when the onc said how do I feel about leaving it all now as chemo is very much ‘just in case’ (unfortunately they can’t see if any cells have escaped any further) I had to admit I needed to do everything I could to protect my future as much as I could. Giving up 2024, a year in my life, for another 20+ years was a no brainer for me.
Some women choose differently - and remember, you always have a choice - but personally this feels right for me.
Whatever happens you will get through it. When I’m feeling bad about chemo or just frustrated and bitter about all of this, I remind myself of people who have gone through this and are now living it and loving life! I’m going to be that person after all this.
Sadly one of my nodes came back positive after the SLNB and I paid for PROSIGNA instead of opting into the OPTIMA trial as I didn’t want to risk being in the control arm for chemo
My results put me at 11% chance of reoccurrence at 10 years
PREDICT v 2 (not v 3 as oncologists haven’t backed it apparently) gave me a 4% benefit from chemo
My onco said 3% or less would mean no chemo, 5% or more is straight to chemo and 4% is on the fence. For “grey area”’patients she said she would always er onto the side of chemo
Have you considered paying for PROSIGNA to help with decision making?
ONCO can be used for POST menopausal women now (will post the NICE guidelines when I find it) with lymph + nodes if btw 1-3 so you have that too if you’re post menopause?
In the UK NICE hasn’t approved it for use in PRE menopausal (but US has !)
Also, do discuss diff regimes if you’re on the fence too
I’m having x 4 rounds of TC as my risk is intermediate instead of x 8 (EC followed by a taxane)
Thank you so much for your reply. I’m just having such a battle in my head with the I have no cancer and putting carcinogenic stuff in my body. I only saw the onc yesterday so it’s all so raw.
Gosh we’re almost identical in what’s happening to us. Thank you for responding. I only saw the onc yesterday and my husband and I have discussed paying for the Prosigna and will discuss with onc next week.
I’m 54 and literally reaching menopause now by the time I start treatment I’ll be in menopause.
Your reply is very helpful thanks again and good luck.
Thank you so much for your reply, I’m trying to hang in there but feel very overwhelmed. Having only seen the onc yesterday I’m still processing everything he’s said. I think I’ve decided not to do the Optima trial so want other discussions with him.
I’m really struggling with the cancer all gone but still having chemo scenario and just need to sort out in my head I think. And like you I want to run away as fast as I can. Telling people the cancers gone and hearing and seeing their relief and joy is amazing and yet there is a but and chemo hanging over my good news. And it just seems and feels so flippant when I hear oh just do the chemo from friends and family and I know it’s not malicious and they want the best for me but I feel sick thinking about it.
Hi @nicnac17 , I’m sorry you are having this horrible dilemma many people have been in your position , it really doesn’t seem to make any sense does it that your cancer is gone but they would throw chemo at you and make you feel But as @Kay0987 said unfortunately breast cancer is a sneaky bugger that can creep up on you many years later and throwing everything at it can be recommended by your oncologist to reduce this risk .
It might help you to ring the Breast Cancer Now nurses and talk this through , they are so knowledgable and understanding they may help inform your decision . The number is 0808 800 6000 open Monday 9am . Best wishes Jill .
Yes it’s really hard to determine on the 49/50 age cusp. I have been perimenopausal and have been monitoring since 51 having gone onto HRT and my last period was Aug last year so hence on the cusp of peri and meno.
Prosigna and Oncotype now on list of questions for Onc next week and checking with health insurance. I do think this will help me I’m very data led and am reading voraciously and I think the information either of these tests will give me will put my mind at ease.
The thing with statistics/data is its not about you as an individual…so for example i initially had 4mm dcis …was told i had a 98 % chance of no recurrence…but 6 yeats later it came back …so you never really know…you need to adk ypurself ehat risks are acceptance to you…do you need to know you have done everything possible to reduce risk…or happy to avoid some treatment and take that risk…theres no right or wrong…and you can never say you are cancer free …no onvologist will ever tell you this…just that you are NED …even with negative lymph nodes cancer cells can soread bua the blood …i dont say this to scare you…i say it so that you are encouraged to make an informed decsuon…i say this as some one who has had primary BC 3 times and the first time as 4mm non invasive dcis i was the last person who be be predicted to have a recurrence …talk it over with your team but be very sure in your own mind what risks you are prepared to live with …chemo isnt fun but its ok , its doable …wishing you well
This 100%! Couldn’t agree more with you! I think it takes time in the cancer journey to stop hedging bets in your mind and accept that someone with a 1% chance of recurrence can get it back while someone else responds beautifully with a far more sinister cancer and gets no recurrence. I just want to eliminate as much risk as possible and I’d be panicking if I hadn’t done everything possible. This year was always going to be awful so I may as well make it super awful and increase my chances and know I did everything I could! Luckily I have a belts and braces oncologist who just tells me the best option for anyone rather than the most conservative one. She’s very stat driven which works for me!
Thank you so much for your replies @cat15 & @swk1981 and yes agreed data isn’t related to me hence why I want to do the Oncotype or the Prosigna test so I do have data relevant to me. I just want to make sure I’ve collated enough info and spoken to people so I can make an informed decision.
Maybe you can have a second opinion? And ask both your recent and the other doctor to explain to you in an understandable way why they recommend the chemotherapy. I mean what exactly it should do in your body. I had an unilateral mastectomy 7 years ago, clean lymphs, and no chemo or radiation, only Tamoxifen. But of course you can’t compare the one person with the other, there are so many kind of cancer cells and medical histories, everyone needs a custom-made treatment. Wishing you all the best! Barbara
But as