25-10-2018 03:56 PM
Hope you are feeling a bit better about things. How lovely that your work place is being supportive. Just in case you are not aware, The Disability Discrimination Act also applies to people who have/had cancer.
Sorry if my reply was a bit long winded but I just found it strange that they were not offering a clear recommendation (which I assumed was the norm when a tumour is Her2+) However, it has just dawned on me. Was your tumour size 10 mm or less (classed as a T1a or T1b)? If so, then the NICE guidelines (so I am assuming you are in England) are to "consider" chemo and herceptin rather than offering it as standard treatment for tumours T1c and above.
That's great your lymph nodes were clear (me too) and the tumour was removed cleanly (I had chemo first. when they examinied the tissues after surgery, there was no active tumour left). Clear lymph nodes are obviously a good indicator as are clear margins. Unfortunately tumour cell travel is not always through the lymph nodes and I suppose we can never be 100% certain that some stray cells have not been left behind or slipped through the net.
Your 10 year odds are very good - even without the treatment - it's all relative as they say. I know you said it would be easier if the figures were lower. However as far as I know these are overall survival rates not recurrence rates. Hence, within those statistics are people who have had recurrences or who are living with secondary recurrence. In some situations, recurrence statistics may be more helpful.
I don't envy you having to make such a decision. I think it is so hard weighing up the pros and cons of any treatments - especially so with chemo. Whatever you decide, it would seem that you are statistically in a very good place. I just want to wish you well with any treatment path that you chose to accept.
24-10-2018 09:38 PM
WOW thank you so much for such an in-depth answer 😊
To answer some of your points - I had lumpectomy and sentinel nodes removed cancer completely removed and nodes clear which is great - ER8 and the HER2 originally came back borderline but further test has come back positive so now decision as per my post
Yep your right the statistics were from the NHS Predict site - the chemo they are suggesting is Paclitaxel
I have been given lots of information to read on the chemo drug and the Herceptin and the hormone therapy which I have read and now have better picture of what to expect
The more I am thinking about it the more I’m thinking to go with the chemo etc I feel that while its being offered I should do all I can to help prevent a recurrence happening and just accept that I’m in for a year or more of treatment to hopefully come out the other side feeling I’ve given it the best shot possible !
BCN spent ages with me yesterday and I think as much as I was trying to ask what she would do she obviously can’t give a definitive answer as it’s my decision to make - they have just given me all the info so I can make an informed decision.
If the predict site had had given a lower result the decision would have been so much easier as it would have been a no brainer !
Work have been fab had a long chat with my manager today and they are being totally supportive with which ever decision I make
thanks again for your input it has been very helpful and so good to speak with someone who’s been through this scary journey
24-10-2018 10:35 AM
First things first - you are not blabbering on! And next, apologies in advance if any of the below increases your dilemma.
As Bibi says, take a little bit of time to work out what is best for you. Yes - should think it quite normal to want to shut it out and run for the hills. Trouble is you can't run away from yourself! You have just entered a new world where you don't want to be. You need time to process and make sense of things.
In the end, whatever grade, stage, size, type etc of primary breast cancer or whatever treatment we have, there is always a chance of recurrence whether local or distant. There is no escaping that, however hard that may be. However there are things we can do and treatments we can have that reduce that prospect.
I think to help you make your decision, it may be helpful to consider the following:
1. Was it clarified with you whether chemo would be recommended wwhether the tumour is Her 2 positive or not? I am assuming it would not be recommended and chemo is only coming into the picture because of the her2 status.
2.. Do you know if any of your lymph nodes are affected or have these been given the all clear? I am assuming they are clear or minimal affected otherwise chemo would be generally recommended irrespective of Her2 status
3. Are they still not clear about the Her2 status? Why are they not clear and What tests have they done to establish clarity?
4. Have you already had surgery? We're the Her2 results taken from a core biopsy or was it from pathological examination of the removed tissue?
5. What is the likelihood for recurrence if your tumour is Her + and you do not have chemo and herceptin treatment?
6. What would the Onc recommend for themself/partner/off spring in this situation?
If chemo is only being recommended due to the Her2 status, then I am assuming they are not totally clear about the Her2 status. If your tumour is clearly her2 positive, then there would normally be a clear recommendation for chemo and herceptin and your only dilemma would be whether you accept the treatment or not. The fact that they are leaving you with the decision without a clear recommendation seems a bit unfair in this situation as you need to make a fully informed choice. It would indicate some doubt over the her2 status.
How did they reach the statistics. Was this using NHS Predict? You can also find this yourself online. Statistics can be helpful, but in the end they can only give us a possible indication and not the definites that we crave!! NHS Predicts give statistics on overall survival within a time frame - it does not predict recurrence rates.
Her2 type cancer is classed as an aggressive type of cancer. It has a higher potential to grow quickly, recur and spread. Herceptin is a targeted treatment for Her2 positive cancer. Herceptin is not given unless a tumour is Her2 positive.. At the current time, herceptin for primary breast cancer is not given without (a taxane type) chemo. It can be given concurrently or sequentially.
I hope they gave you the full information on the type of chemo (was it FEC-T) being suggested and info on herceptin. If not, look up on this site or on Macmillan site. You need to have clear info on the possible consequences of treatment - both the risks and benefits (not just the statistics).
Chemo and herceptin treatmentis not something to be taken likely. As well as the short term effects and the time commitment to treatment, there are also are potentially serious long term side effects. However, on the other side, they are also possible life savers.
If you are still unclear about your decision and need further information, then ask to speak with them again/speak with BCN. You can also talk things through with the nurses on the BCC helpline.
I hope I have not made things any more complicated for you. In the end, you have to reach a decision that you are comfortable with for now and in the future.
Take care Zena,
Chick 🐣 X
23-10-2018 06:37 PM
Its completely normal to want to run away. It’s really hard even when having all the information to make a decision - I know for me I wanted the information but still wanted to be told what to do if I’m honest. I had a couple of weeks really struggling with a decision whether to have a mastectomy or a lumpectomy and it took a lot of talking, and reflecting, and asking questions before I could decide. So don’t think you have to decide in a day - try to ask questions, I found writing it all down helped me to organise my thoughts. Some of your decision will be down to your own personal circumstances about family and age etc.
I have had chemo, then surgery and radiotherapy and am on Herceptin till next June- it’s a tough journey but just thinking about each treatment as I was going through it helped to chunk the time and make it not seem so daunting. I was diagnosed just after Christmas last year and feel like I’m just starting on the road to recovery and things are getting back on an even keel again.
Good luck with making your decision xxxx
23-10-2018 06:17 PM
Well appointment was an eye opener and I am now in a total whirlwind of emotions 🙁
Basically I have to make a decision (probably just as everyone has to ) whether to go ahead with chemo for 12 weeks and a year of Herceptin the RT & hormone therapy or just go with the RT & HT ? According to statistics if I don’t go with chemo & Herceptin then in 10 years there 86% chance of being ok if I go with the chemo then that rises to 91% - I have read all the info and lots of stories on here and really can’t decide what to do for the best !!
I think penny dropped a bit a bit more for hubby today with realisation that the cancer has potential to come back !!
I feel knocked sideways and want to just run away 😢 is that normal !!
Any words of advice would be greatfully received and wasn’t sure whether pose this post into the other section as you suggested ??
Sorry to blabber on
22-10-2018 10:54 PM
Don't worry about where you put things - I wasn't meaning that you had done anything wrong. I just thought you may have got a better response from people who are, for example, in the targeted treatment section as some people now on herceptin may have been in a similar situation or people in the recently diagnosed section may be waiting for her2 results or had unclear results.
I am so sorry to hear about your diagnosis. It is so overwhelming at first isn't it as you wait for all the results and the proposed treatment. Have you already had surgery? Try and take it as it comes - one step at a time. Yes it is easier just giving a quick OK sometimes isn't it? I didn't really tell anyone until I had too and found it easier to talk through issues with anonymous people on the phone!!
I was ER+, Her2+, grade 3. Stage 2. no lymph nodes involved diagnosed in Aug 16. Had the bleeding works - chemo, surgery, radio, herceptin, Anastrazole tabs for at least 5 years and Zometa infusion every six months for 3 years (3 more to go!).
If chemo is recommended and you accept it, I am sure you will be fine. There's plenty advice and downloadable booklets on chemo and everything else on this site, as well as a free helpline, all the wonderful people on the forum and all the different sections for the different treatments. You are not alone Zena.
All the best for your appointment tomorrow Zena and hope you get clarification,
Chick 🐣 X
22-10-2018 08:21 PM
Hello Chick 😊
thank you you for your response - as I’m quite new to the forum I didn’t realise I should have put the question in a different place thank you for letting me know 😊👍
My BCN just told me that as the results were just above negative the oncologist wanted to have discussion with me regarding going forward and planning so I really don’t know if they have completed any further tests to ascertain any more results - hopefully will find out tomorrow! The thought of chemo totally terifies me 😢 but will go with it if needs be as it still may be on the cards.
It it is good to hear from someone else in similar situation - I have felt in total turmoil since my diagnosis on 8th August I have become the master of disguise when people ask how I am - sometimes just easier to say I’m ok 🤪
Thank you so much will keep you posted after appointment tomorrow
best wishes to you too 😘💗
20-10-2018 04:28 PM
Just wondering if you may get more of a responsecif you move your query to the targeted treatment section or the just been diagnosed section.
Anyway, my cancer was stage 2, Er8, Her2+ and grade 3 (I think most Her2 + are grade 3 cells).
I think there are four types of testing available for her2. When my tumour was initially tested with the IHC test, the result came back 2+ and thus was classed as borderline..
(0 = negative, 1+=negative, 2+ = borderline and3+ = positive). When this happens, they will then undertake at least a second test.
Hence a further test was done called the FISH test which yields either a positive or negative result. My result was a positive and hence the need for chemo and herceptin.
That is great that you are meeting with Onco to discuss matters. As you have said the results were slightly above "negative". it could be assumed that a FISH test has already been done. It may be a good idea to clarify which her2 tests have been undertaken. It could be that they further test the same sample using one of the other tests or obtain another sample for testing.
If not, then I suppose it is a case of weighing up the risks and benefits. Do you know if chemo is being recommended even if the her2 status is negative?
Your Oncology will have come across this situation before or at least know the research and what is considered to be best practice in these situations.
I hope everything is clarified and resolved for you at your appointment on Tuesday Zena.
Best wishes to you,
Chick 🐣 X
18-10-2018 06:55 PM
Hi again everyone
I have just had my HER2 results back and been told levels very slightly raised above negative but not enough to be totally positive so I am assuming from this it’s classed as borderline 😬
BCN explained that oncologist wants to have discussion with me before anything is set in stone with treatment and that I might well be facing chemo & rads & hormone therapy now feeling very much in a mixed up state. Other results were that tumour was grade 2 and ER 8 any advice ladies would be great 👍
oh yep forgot to say oncologist appointment is next Tuesday