Recurrence in HER 2+ Without chemo& radiation treatment

Hi

Im in similar position but also with Oestrogen +. I have also have 3% statistical improvement in survival via chemo and Herceptin. For me its 4 x EC, 3 of which have been given, followed by 12 x weekly taxel and Herceptin. For me at the beginning when I weighed this up I honestly would have opted to do anything to increase my chances of survival. And whilst I've had some down days on chemo I have never fundamentally changed my position. It is daunting at the beginning but somehow the treatments and side effects become a normal part of life and we get through it, finding strength and insights along the path. And to be honest my side effects have been very manageable to date. I have learned to be vigilant and seek advice from nurses and oncologist at the slightest concern. Good luck to your freind.

If it isn't in her nodes (they sound clear with these statistics) would her oncologist consider running an OncotypeDX or Prosigna test,  which looks at tissue from the tumour to see if chemo would be beneficial or not.  

The drugs for HER2+ are only given with chemo,  so she needs to look at Predict as showing either both chemo and Trastuzumab or neither. Are you sure that the data is correct,  as chemo usually adds a lot more than that for HER2+ BC, and doesn't include radiotherapy on the list of options. The link is here:

https://breast.predict.nhs.uk

With the percentage given its not that clear cut,  as some people die from other causes in the10 years I convinced myself to do chemo (ER &PR 8/8, HER2-) with a 4% gain by looking at the difference BETWEEN the statistic without chemo and women that age alive in 10 years and imagining them in a group.  Statistically at my age I had a 93% chance of being alive in 10 years if I'd never had BC. These are only statistics,  as my family live longer than average (mum died at 97, my uncle is 99!). That difference was more real,  as with chemo I have a 1/17 chance of it killing me in 10 years (6% difference),  with ther EC (second stage chemo) 1/ 14 (7% difference) and without chemo 1/10 (10% difference). I don't have Lvi, which if i did have it would increase the risk of spread and isn't on Predict either so my statistics might be betterthan suggested...... but someone had to be that one person:(

Good luck!

hi

welcome to the online community

The Predict tool is very useful but it is a general guide based on lots of data giving a statistical rating rather than a specific personalised sum.

https://breast.predict.nhs.uk/tool

93% is obviously very attractive but so is 90%

With my own figures inserted I got 53% with surgery only, i have a feeling the tool has been updated a couple of times since I was being treated back in 2015, and an uplift to 73% with chemo and Herceptin. I didn't want to have chemo but with those kind of figures I was told I'd be an idiot not to.  It's not pleasant but I got through it. 

Anyone whose been on here a while will know that I usually advocate for NOT having chemo.

I think we over treat with harsh drugs that have long term side effects for very little benefit when nobody actually has a crystal ball. Women in the relatively good percentages are still feeling under pressure to 'throw everything at it' when their uplift stats are only 1 or 2% on already good 97 or 98% BUT I was told nothing is 100% so you will never get a figure of 100%, lobular doesn't respond that well to chemo in any case, and I could have all the chemo etc and still get a recurrence or I could ignore their advice and not have it and still be in the better half of the percentages. Although I got through the chemo it took me ages to pick myself up off the floor afterwards. 

Chemo carries a risk of 10% generally and that's all cancers and all patients.  Breast cancer patients are lower because we're a bit easier to treat, we take our meds and we're vigilant on hygiene and taking our temperatures. 

It's still about 3%.  

The conundrum I have here is that I was told EVERYONE who has Her2+++ is recommended to have chemo, possibly in a bid to get me to comply and since then, certainly more recently, that advice seems to have changed and quite a few women on here are saying they are being given a choice. 

Women with smaller tumours or affected areas, no lymph node spread, I didn't have lymph node spread but my large DCIS tumour, 65mm, was littered with small Her2+++ and I think that's why I was strongly advised to go with 'belt and braces' chemo . The team also missed a second tumour which they then refused to surgically remove, so forcing the issue. 

We also can't opt for just the targeted therapy, Herceptin, in the UK as it's only approved for use with chemo. 

The gold standard, which is coming, just not quickly enough for some, is the circulating tumour cell test. 

Your friend could easily accept the 90%, avoid chemo but have regular CTC tests to check for evidence of cells. 

Depending on her finances she could look into getting this done privately.

Certainly worth asking the question. 

How old is she? 

Carolyn

xx

Thank you so much for your response I really appreciate you sharing your story & how things have been for you, which I will share with my friend. She’s really looking to hear others experiences post operation and what difference chemo and radiation will make - to help her make the decision. Rach x 

Hi Carolyn 

thanks so much for your response I really appreciate it. 
she is 53. 

Hi

As others have said the chemo is not really the issue here , the predict test doesn’t take into account herceptin which is the key drug here,and which you need to have with chemo. The various tests mentioned earlier are not applicable to HER2+ breast cancer so she won’t be eligible for this. For me (I was 51) I wouldn’t have been recommended chemo as I was stage 2 grade 2 but to have Herceptin I had to have chemo , which I gladly took even though I was not expecting it to be an option. 
I I am guessing she had a lumpectomy which is why she has been offered radiotherapy? I didn’t have this as my cancer was it near the chest wall (I had a mastectomy) but others who had mastectomy are offered radiotherapy.

Ithink what I am trying to say is that we are all individuals and whereas it may appear that someone is the same as you it is not at all and there are so many  factors to take into account which the predictor tools can’t see. At the end of the day I would suggest your friend just finds as much as she can about the treatments she has been offered and doesn’t rely on others experience ? 

hope things go well for her

Jox

Hi jo 

thank you for taking the time to give another perspective really appreciate. She’s had a mastectomy, so sounds similar to yours but as you said it’s all very individual and it maybe we investigate her treatment further rather than others experiences although we are trying to do both to get better informed about makig the treatment decision. Thank you so much 

rach x 

I was diagnosed with stage 2 Breast Cancer Her+ and ER+ in the autumn of 2016, had a mastectomy in January 2017. As margins were clear and sentinel lymph node, too, and as I also had my ovaries removed before the mastectomy (no cancer there), and my left lower lung lobe, as a tiny(different)  lung cancer was by chance detected there, and I was told thatthis  was contained, I decided against chemotherapy and Herceptin then. I felt my body had gone through enough, recovered well, and I didn't want to then have it go through chemo.

I had two good years, but then the breast cancer recurred in three of my lymph nodes early this year. So I had them and six more cleared (no cancer in the six others), and decided to go through chemo this time, combined and followed with Herceptin until next summer, and I await radio therapy at the moment. 

Morning Rach  /

Your friend being HER2+ has been diagnosed with one of the BC types that unfortunately is considered to have a high recurrence rate - BUT... the newer targeted therapies are game changers for this type of BC. Downside is as mentioned she will have to accept the need for chemo to get these newer biological therapies as NICE doesn't fund them to be used on their own.

My wife had HER2+ and mastectomy way back in May 2012 when they first brought out Herceptin and 7 years on is still classed as having no evidence of disease (NED) the inclusion of the even newer Perjeta raises the 'odds' even further so we do hope she can be reassured going the everything inc the kitchen sink approach is the best option.

Is she is coming round to the idea this is a long drawn out treatment plan, but one that works ?

Hugs, G n' J

Thank you very much taking the time to respond. These experiences will be so useful to hear about as my friend is only just starting on the treatment journey. Thanks so much rach x