Hey. I was diagnosed with Grade 2/Stage 2 9mm IDC in Jan, no lymphnode involvement, triple positive. I had a follow up appointment 2 weeks after surgery to confirm no spread and to discuss next stage of treatment. They have said due to the size will 100% need radiotherapy potentially 10 doses due to my age (under 45) and have said Tamoxifen for 10 years. The doctor said chemo was potentially up to me as the mass was small but wanted to explain the benefits of Chemo and Herceptin and said that they will refer me to the oncologist to have a discussion. My details have been sent off for genetic testing as there is family history but they said this could take 6 months to get an outcome. Has anyone not taken Chemo? In my head…I know there will always be a chance of reoccurance…part of me what’s to do everything I can to minimise this even if there is not a massive % of improvement in the short term. Part of me is also worried that if I do have one of the genetic genes…I presume that if I blast myself with chemo this should destroy any potential other niggly cells that I have?
Have a look at the PREDICT tool, it tells you the improvement in survival and disease free recurrence with the various combinations.
My understanding is that if the improvement in outcomes is less than 3% then they don’t offer it. Personally I’d throw everything at it xx
Predict shows between 2.2 and 3.6% at 15 years with Chemo. Part of me does feel that I want to blast it with everything I can…I guess they wouldn’t offer and ask the oncologist to explain the benefits of it really wasn’t needed?
So as you say, right on the borderline. It’s a hard decision, I’ve jumped at the chance for chemo and was petrified I wouldn’t be offered it.
I’ve glibly signed the consent form with all the side effects detailed, because in my head I’m not going to get any of them permanently !;;
But I think we all play the statistics game in our heads, bargaining which side of the stats we’ll fall.
I have read of people who’ve had permanent peripheral neuropathy and there is a long term increase in risk of leukaemia, but certainly in my case I can really only see as far as getting rid of this cancer now, dunno it’s a tough one xxxx
Hi @chellebelle
I understand your hesitation around whether to have chemotherapy or not. It is the thing most people dread being told they will need to have.
I was diagnosed with a very small amount of grade 3 HER2+ within a larger area of DCIS. There was no spread to my lymph nodes, and a lumpectomy removed all of the cancer. I still had some chemotherapy and will be having Herceptin 3 weekly until October.
I had four sessions of Abraxane (nab-Paclitaxel). In the first week I had quite painful legs, but this was manageable with paracetamol. I have also had very short lived other side effects such as itchy skin (lasted a couple of hours), occasional constipation (cleared without medication), and tiredness. I have worked throughout, just learned to intersperse the running around with a sit down job. My husband claimed I was playing side effect bingo and I was trying to tick them all off, but one each day!
Unfortunately no one will be able to tell you what kind of experience you will have. I did try asking the nurse before I started my treatment, but she said it was down to the individual body.
Why not go along and speak to the oncologist, find out their reason for recommending chemo and then make a decision. You can always post a question in the Ask Our Nurses section, or call the helpline if you want further information.
I’m pretty certain I will take it…despite the side effects as I want to do everything I can to increase my chances of not getting it again where I’m still so young. I’ve come to terms with the potential side effects and I know it won’t be forever. I don’t think I want to have that self doubt in my mind and the what it’s that may come with not having chemo I think!
Hi There,
I had bilateral mx following 8 DCIS. They found 5mm IDC after surgery with clear lymph nodes. I got the oncotype which was too small to register and also did genetic testing which I passed with flying colours. So no chemo and really low chance of recurrence.
Roll on two years and they found an infected lymph node following a yearly ultrasound. I now have to have chemo and radiotherapy and it’s a long road ahead. It’s impossible to know but maybe if there is any doubt there is no doubt. At the time I was delighted to get my life back but now wonder what if. It’s so hard to know, most people would go on and nothing might happen. Worth getting an oncotype test to determine grading as in ways if my cancer had been bigger I might have known what I was dealing with. Best of luck with whatever you decide. Talk to your oncologist and discuss the options
Can you do herceptin without chemo? I’m reading about some people in the US being offered that if their HER+ tumor is tiny.
Hey Kay. I’ve been advised in the UK than I cannot do Herceptin without chemo.
Hi SL255. Sorry to hear that you had a reoccurance…that is something that I and I’m sure everyone worries about. I’m waiting for my genetic testing which they said could take months, I have 2 females on my side (mother and aunty on mother’s side) who have had cancer. I haven’t had an oncotype test I think due to the hormone receptors but my NPI score is 3.18.
I had Genetic testing and received the results in 6 weeks. Double check that timeframe to be sure. I also had a oncodx test and it predicted that the risks would be greater than the gain, so I did not take chemo. Did have 20 radiation treatments and Anastrazole for five years as treatment guidelines. Ask questions of your oncologist about chemo. Wishing you all the best care possible.
Hi @chellebelle
It is a personal decision if your oncologist has given you the choice.
I had bilateral invasive grade 2 20mm ER+ and HER2+ and grade 1 9mm ER+ (found with MRI to determine size of 1st tumour). I was told that I needed Herceptin and with that you must have Chemotherapy. I had 12 weeks of Paclitaxel with 18 cycles of Herceptin, if tumour was larger it would have been Docetaxel and Carboplatin on a 3 weekly schedule with 18 cycles of Phesgo. So size does determine chemotherapy regime. Had I been given the choice I would have taken chemotherapy as Herceptin gives the best results against HER2+ receptors that can be very aggressive. I was extremely grateful I was given the option.
Chemotherapy is not easy, and everyone’s experience is different even on the same regime ( maybe have a look at the chemo starters monthly threads) but it’s doable. Yes your immune system is suppressed so you need to be more careful with infections, germs etc. On weekly Paclitaxel I only have a 2/3 good days and one of those was back in the chair, suffice to say I didn’t do much with 1 day a week. 3 weekly many people have a good week, so gives more options.
Worth a read if you haven’t already HER2 | Breast Cancer Now and Dr Liz O’Riordan has a YouTube on the subject.
Also not if you’re HER2+ you are unlikely to have an oncotype test as it’s for HER2-, ER+ and no lymph node spread. ( see BCN oncotype DX)
As already mentioned you can call a BCN nurse, or your breast care nurse or oncology team to discuss it further. You need all the information to make an informed choice.
Take care 
Hey you
So sorry to hear your news. My breast cancer is triple positive and 18mm tumour, had lumpectomy and decided to go with chemo, radiotherapy and herceptin. As I am 54 and post menopausal symptoms am on letrozole for 5-10 years.
I was told it was up to me if I wanted ’ belt & braces’ and go for chemo etc and decided I needed to throw everything at it. I would hate to look back and wonder if I ever got diagnosed again.
I did get numb feet/hands with chemo so had 10 weekly abraxine rather than 12 and pleased I did. Hands are back but feet annoyingly are not although 6 months on from chemo they are showing improvement.
You can only have herceptin if you have chemo in UK so had to do the lot. I am a year on from my diagnosis and back for my first mammogram next week since this ordeal started…think I am dreading that more! The thought of clamping my dodgy boob in the machine…it’s not recovered yet and we are back to a waiting game for results.
I guess what I am trying to say is I decided to throw everything at it. It’s not been at all easy but I know then I have done everything I can. If it comes back then it does but I won’t be left thinking ‘what if I had had the chemo/herceptin’ etc.
Good luck with everything.
M
Anyway
I’m planning on getting something like tramadol and probably a bit of diazapam for my 1st mammogram !!!
Sorry to hear about your diagnosis…I was 44 when I was diagnosed with a dcis recurrence having had lumpectomy and chemotherapy 4 years before. No hormone treatment was offered at the time
After my masectomy a small invasive tumour 5mm HER positive ER positive grade 3. normal lymph nodes.but lymphovascular invasion was found. I opted for chemotherapy weekly paclitaxel for 12 weeks and had 6/12 of herceptin.
It was tiring and as everyone has said a few side effects which differ from anyone but it was manageable.
Hope your appointment goes well.
My consultant told me that giving Herceptin and chemo together doubles the effectiveness of Herceptin. He said it was fairly new research when I was diagnosed at the end of 2021. I lost my hair on Paclitaxel and after week 10 of 12 sessions had a bit of neuropathy in my hands & feet, but it helped doing gentle walking. It went altogether pretty soon after I finished chemo.
I kept my hair on Paclitaxel as I cold capped for all 12. Two small patches above my ears possibly due to glasses, some shedding all over but I have a lot of hair so wasn’t noticeable.
Cold capping is not for everyone, the first 10/15 minutes is the hardest.
I 100% feel that I want Herceptin and I know I have to have that with chemo. When I see the oncologist soon I think I will definitely push for chemo as in my eyes I want to blast it with everything I can and don’t want to live with regret for sure!
The breast nurses said if I did chemo I would only need 6 cycles, 3 weeks apart too which is good.
Jeepers! Hadn’t thought of that. I will definitely take something strong!!
Hello @chellebelle
Wow this is a big decision, you are so lucky that they have given you a choice. Most of us don’t consider we actually can say no and will say we took chemo and are glad we did. There are other methods though and these are proven to work too.
With regards the BRCA test, my daughter was told 6 months and her results were back within 6 weeks, she is in UK.
Back to the other methods, If you have Facebook look up Chris Wark Square One Program or just google it anyway and sign up. He is currently putting his videos up for free and have a good source of information. He like you had surgery then chose to not have chemo, that was 20 years ago. He has a book called Chris Beat Cancer and a cook book too with healthy cancer fighting and anti cancer recipes . You may decide to change your lifestyle to decrease your risk of recurrence, the tips and reasons in his program are gold dust.
Another good source of information
Allan Taylor of Middlesbrough, who survived terminal cancer for over 10 years with an alkaline diet. Here’s a link to his interview.
Then there is a book called Breaking The Cancer Code by Geronimo Rubio and Carolyn Gross. I read this over and over and took out of it some strategies that I still use today
Melissa Merchant get your fight back method, I follow Melissa on Facebook, she can be contacted and talked to directly.
I took the chemo as I was Triple negative and had chemo to shrink the tumour before surgery. Whilst going through treatment I was studying the above and put into place many different strategies from these sources, including getting rid of all toiletries and makeup with petro chemicals in them. Goop have a list that I took a screenshot of and checked on when shopping. Shopping took forever until I found replacements I was happy with. Even food shopping took forevever, reading the ingredients of everything and oh my trying to find a yoghurt with less than 5g of sugar is virtually impossible, I did it though.
Results from surgey showed I had had a full pathological response and all signs of cancer had gone. I believe it was the extra work I had put in myself that gave this fantastic result. It’s 3 years today that I got the news I had cancer, I remember this but don’t calendar it, that is for my CANCER FREE DATE
The fear of recurrence doesn’t go away, it fades at times sometimes to nothing. Knowing I make the right choices after treatment and each and every day keep me positive that recurrence or even mets will stay away for as long as possible hopefully forever
If deep in your heart you don’t want to poison your body with chemo then be brave and do what you feel is right for you. None of this is easy no matter which route we take, just know you are doing the right thing for you with the knowledge you have.
Hope this helps and wish you well with the decisions you make xxxxxx