I saw your thread and just wanted to say hello. I follwed it with interest as I too was given a similar choice I was grade 1 and was upgraded to 2 and was given the same choice mine was even less of a percentage at 0.8% difference.
I took the zoladex, tamoxifen, radiotherapy(19)route and was back at work within 2 and half months of initial dx. Things have been fine, the hot flushes and menopause are not too bad. I got myself a chillow and am on tablets called chlonidine which help the hot flushes amazingly well. I had my one year mammo in February this year and all seems well.
There are loads of hints and tips for any of the side effects from hormone treatment in the undergoing hormone treatment pages.Good luck with everything. S x
Hi Terrier, just seen that you have come to a decision and it all looks good for you! Good luck with your treatment! love Debs xxxxx
lots of luck with your treatment and glad you were able to come to a decision that both you and the onc are happy with.
I have made my decision. Saw a different onc today and he told me I was right about the lymphovascular permeation, it was on its way to the lymphs, but they got rid of the permeation when the lump was taken away. Plus, the lymphs, they took out was a trurer reading and they were free of cancer. So, he was totally comfortable with my decision not to have chemo, he was also unsure of its benefits for me. Particularly as my cancer is so very hormone receptive, it scores 8 out of 8. So it is 18 days of radiotherapy for me, with Zoladex and Tamoxifen. Hot flushes will be the next worry and early menopause... still.. better than what I thought when I was first diagonosed!
Thanks to everyone for their thoughts and the information!
Just sent you a PM.
Hopefully you'll get a good discussion with your onc tomorrow.
Just wanted to say that you are only the second person I have come across on this site with lymphovascular permeation. I have tried unsuccessfully to get any information on this so would be very interested in what your onc tells you about it. At least you were told about it - I found out by being nosey and looking through my notes whilst having chemo! I was a Grade 3 so for me it had to be chemo. I do hope you get some answers from your onc so you can come to a definitive decision - in a strange sort of way I was glad that the decision was taken out of my hands and so didn't really have a choice. Love xxxx
these are all really good questions you can ask an oncologist who should give you a straight answer - not a platitude like don't worry your head about it. I really think you have hit the key issues here.
you can go on Adjuvant on line to (this is the nedical database which gives relative benefits of treatments) explore the statistics yourself if you wish, but be in a good frame of mind to do this,,,,,ie OK about reading all the statistics and the diffferent scenarious.
Hi terrier - not sure if you read my PM to you? if not, then you need to be asking about the permanent damage chemo can do as it cannot distinguish between good and bad cells and is a subject most Oncs choose to ignore.
Have managed to see a different onc tomorrow (as the one I saw last week is away on annual leave). I want to ask some further questions before I go ahead/or not with chemo, like what happens to the lymphascular permetation if I don't have chemo? How much is 'some evidence of lymphovascular permtation' Also, whether having chemo really offers any insurances about cancer coming back again in ten years. Plus, once i have chemo once, this then reduces its impact if I have to have it again etc. Tamoxifen (as this reduces reoccurance by 30 per cent)and rads are a no brainer for me, but what's the pro and cons of chemo related to my Grade 1 tumour...?
Lots of questions, any more I should ask...?
Tamoxifen does not kill cancer cells - it starves the cancer cells of oestrogen so they stop growing and in some cases shrivel up and die as the cells are no longer getting the oestrogen they thrive on.
More info here.......
My previous e mail was from an american cancer information site - above is the link to the UK Cancerbackup site which describes the action of tamoxifen as an anti estrogen drug. if anyone wants to read what it does it is there.
I am not expressing an opinion by saying tamoxifen is not a chemotherapy (which kills cancer cells) it acts to stop cancer cells growing or dividing.
Anyway - my last post on the subject- entirely agree everyone has to do what they feel best and comfortable with.
Hi, I was told by onc that chemo would hopefully mop up any stray cancer cells, and if any were left behind tamoxifen would mop them up and also protect me from the cancer returning, or at the very least slow it down,but he was hoping for cure(his words not mine)
best wishes mell x
KatherineM - When I said to my bcn and onc what if happens about mopping up the stray cells if I dont have chemo, they told me "tamoxifen does that". This was also confirmed by someone on another recent post.
Its very confusing for us to make decisions cos different areas/oncs have such different opinions and treatment ideas. Just got to do what you think is right from the info you get.
In my opinion, yes it is worth it. Ok, chemo is not nice, but as one of the other ladies has already said that at least she has tried everything. I would have been furious with myself if I had not had chemo and then the dreaded disease reoccured. I decided to be strong and take everything that was thrown at me, and 10 months down the line I am well on the road to recovery and living my life to the full and having a ball.
good luck girls
Tamoxifen does not mop up cancer cells- it stops estrogen promoting growth of cancer cells
Estrogen can promote the growth of breast cancer cells. Some breast cancers are classified as estrogen receptor-positive (also known as hormone sensitive), which means that they have a protein to which estrogen will bind. These breast cancer cells need estrogen to grow. Tamoxifen works against the effects of estrogen on these cells. It is often called an antiestrogen or a SERM.
I was 34 at dx (14 months ago) with children of 1 and 4 and not a lot of family to help with them. I was grade 3, 2.1cm, with no nodes. I chose NOT to have chemo and herceptin as I was told it would only make a difference of 3% (from 89 to 92%). My onc said if were his wife he would say it was not worth it and to only have it done if I was the sort of person who would worry about it coming back.
The other important factor is which hormone treatments you have. I am having Zoladex AND Tamoxifen, which together do the same as chemo would anyway (one stops the ovaries, the other mops up stray cells).
Hope this helps.
if 800 woman out of 1000 survive with out chemo, and 820 out of 1000 survive with chemo,
then having chemo :
-will be 0 benefit to 800
-will save life of 20/200 or 10% of those who will die
-and will be some benefit or nil benefit to 180 women who will get secondaries and will die.
so for me 2% is not really here or there, discussing whether 2 % benefit is good for something that isn't life or death.
As for the statistic of 1/3 of early diagnosis will get secondaries or recurrence, yes I have heard that, its probably a bit out of date and maybe its a quarter now, I think if you define early diagnosis as node negative, up to 1/3 of node negative patients will get a recurrence. Remember that you can be node negative and be considered a high risk of recurrence, this is determined by size of tumor, HER status, presence of vascular invasion,
Would also like to know where the figure of one third of early dx patients get a recurrence. Never heard that quoted before.
I was told that chemo would make a 2.1% difference and I decided not to have it. ( I had a 8mm tumour which I couldn't feel, clear margins and no node involvement.) My oncologist entirely supported my decision and as I am 64 and my son is 27 I was happy with what I chose to do.I did agree to radiotherapy though. I think that the younger you are the more likely you are to be offered everything that's going. The side effects of chemo should be very carefully considered, I have a friend who has awful permanent side effects from chemo and Tamoxifen, which will never leave her. Find out as much as you can and then be happy with your decision.
Is that a third of women with any type of early diagnosis breast cancer get a reoccurance? Where is that figure from?
I am always surprised at the differing advice we are given. I have to say that 2 % is also 2000 women out of 100,000, which for me was a bit harder to ignore than just 2 women. They say that one third of women with an early dx get it back and that is why they now offer chemo. As you can tell I am pro chemo despite arguing my head off against it when first told it might be on the cards. MY onc has apparently achieved a really high survival rate, close to 90% and gives us chemo routinely. My research nurse says he tracks all the trials really closely and now gives chemo to anyone under 50, whether they have spread or not. I had 28 weeks chemo, no spread and he said it would significantly improve my chances so I just did what he said. No regrets was the path I picked but as Ostrich said you must do the right thing for you. This is such a hard thing, poor you I would have dithered. Just remember that a recurrence is a very different situation from a primary, if that wasn't bad enough! I had everything ops, chemo and rads and find that I can at least think well I did everything I could, the rest is down to fate
Big hugs for your nightmare decision
All good comments. I guess I am a sceptic. I don't think everything about medical matters is a pure clinical decision. I was told 5 years ago my baby would die in the womb. I was told that every day for the remaining time post the 22 week scan. I was told they were 99.9 per cent sure. She didn't die. We weren't prepared to give up on her until we heard her last heartbeat. The human spirit is a powerful medicine. That's partly why I don't think the 2 per cent is enough to make me think 'yeah, let's go for it'.
thats a really good way to put it- focus on a decision that you can live with.
My attitude would be 'that is MY 2% not the cancer's,mine and my childrens-for every 100 women in my situation 2 will die without chemo who would have lived with it!
Sorry, forgot to say, I am not sure what lymphovascular invasion is entirely but is that not to say that there was some evidence of invasion into the lymphovascular (ie blood supply for the lymph system) then there is some evidence the cancer was certainly thinking about journeying on? I may be wrong it may be that lymphovascular invasion is just talking about the cancer heading down the lymph vessels towards your lymph nodes.
If I was you I would make sure I understood the lymphovascular bit and, if it meant that the cancer had begun to move on then that would certainly help me in my decision.
I had a 18mm grade 1 lump with micrometastases in only 1 out of the 9 lymph nodes taken and chemo was left to me to decide. I had a skin sparing mx and LD recon due to the position of my tumour (just behind my nipple). From what I recall with no further treatment the chances of recurrance he quoted were 20%, tamoxifen would half that to 10% and chemo another 2 - 3%. I was only 39 at DX and decided that I wanted to give myself every chance of being here here in the future and for me 8% seemed better than 10%.
The thing is statistics are just that. Had I had no further treatment I may have lived for donkeys or not. With all the treatment I may live for donkeys or not. The thing I have learned from this forum is everybody's BC is different and you will find many women with quite high nodal involvement and aggressive cancers being disease free for many years whilst others with low grade and no nodal involvement having recurrances.
Don't focus on the 2% - focus on what decision you can live with. I didn't want to ever think "what if" and whilst this might sound silly I was kinda glad they found the micromets because otherwise I would have been node negative and probably not even offered chemo (some hospitals would have classified me as node negative even with the micro mets) and I wanted to throw everything it.
Hope you can make a decision that is right for you, x
Hi Terrier, was in same position as you didn't get told to have chemo but could have it if I wanted.... 15mm grade two,no nodes involved, the thing that was making it an option was my age...44.... got friend(56) who had roughly same results and it didnt get mentioned for her. It was going to give me 3% over ten years, was also told that the chance of me dying of non cancer illness or accident over same 10 yr period was 2%.
It's purely a personal thing,I know I would be rubbish on it,but if was told that had to have it then would just get on with it,but like my surgery was given an option, was offered mastectomy or lumpectomy,with that I took the view of why have something if I don't really need it, if they thought I should have had either mastectomy/chemo then they would have been telling me to go down that route and not give me an option at all.For me and the percentages given ,the risks outweigh the benefits,it's something you have to live with, not an easy choice . Good luck.
Hi Terrier, you need to do your own research on chemo and then take time to make a decision that is right for you. Unfortunately Oncologists often do not share a lot of information-mine certainly didn't and she made up statistics as she went along!!
Many women choose not to have a particular part of the treatment. They may have surgery but then choose not to have chemo, rads or hormone therapy. It is quite hard to get accurate information on the various therapies as stats can be manipulated to suit a particular argument. My advice would be to take time to make an informed choice.
Cancer is a complicated disease and everyone is different.
If you want to pm me I would be happy to share more
my BCN said after my results that the onc may say Chemo would be my choice, what a horrible decision to make but I decided that I would have it as any % increase was an increase. It's purley a personal choice.
As it turned out he didn't say I had a choice and I have finished my chemo 6 weeks ago. No it's not easy and it's only now I can really appreciate how ill I felt towards the end. I'm still feeling the effects now but getting better every day.
I lost my mum to this cruel disease 29 years ago when I was only just eighteen, she had liver secs and I was only saying to my sister yesterday on the way back from rads, would she have been here with us now if chemo had been available then!
An agonising decision to make
Hi terrier, My lump was grade 2 with 2 out of 21 lymph nodes infected. I was told that the oncologist recommends chemo but haven't met yet as have to go for more surgery to make margins clearer, here's hoping I don't get offered a choice!! Debs xxx
I was dx grade 1 idc in Dec. had wle and lymph node removal. 2 nodes out of fourteen positive. Was not offered chemo. Just rads and hormone treatment. when I questioned my onc, he said chemo would only give me another 2% and for that the side effects would not be worth it. However it all depends what type and grade you have. I was concerned about not having chemo at first but have now decided that I have to trust my onc. Good luck with your tuff decision.
sorry you have had to join us.
I was diagnosed 1999 lymphs clear grade 2 lobular, had my overies removed but was not offered chemo, I always had a little nagging feeling that I would have been better off if I had had it. Coming up to the 5 year point and wham, secs to liver and bones. I can understand your concerns re young children and quality of life. Chemo is hard but doable secondaries are cruel, constant chemo is horrid but all you have left to extend your life.
It has to be your decision and others will be along with their experiences. I hope it will help you.
I have just met with my onc, post having a lumpectomy and the grade of the tumour has been downgraded to a grade 1 - it was a grade 2. I was the subject of debate though, as the histology report noted lymphovascular permation was present. However, four lymph nodes were free of cancer. They therefore gave me the decision as to whether I wanted chemo. I will have hormone treatment and rads. I wonder whether looking at the print outs (it improves my chances by 2 per cent) whether it is worth it?? I am questioning the impact on my quality of life for something that might be. I have two young children 13 months and 5 and I also have to think of them. Anyone been in the same boat as me?? This shared patient decision making is not all it is cracked up to be!!! ANY views are welcome!