Why did I not get chemo?

Hi everyone - love this site it is soooo imformative and very uplifting!

I was dx 4.9.07 - had lumpectomy, SNB, rads and now on tamoxifen.
I had 15mm grade 2 lump very deep within my left breast.
I didn’t find the lump myself - they said it was an ‘incidental finding’.
How lucky was I!

Anyway now that I am 6 months down the line and have had time to think
about all that has happened to me - I only have one wee worry - chemo - why
did I not get it? Not that I particularly wanted it but my BCN said because of
my age (44) I would more than likely have chemo, so I had myself built up for
it and then was told I wasnt getting it.

Having read other womens experiences on this site and some of them having the
exact same dx as me and them getting chemo I am a bit confused.
My BCN said that they would probably give chemo just in case one of the cancer cells had broken off and started to travel round my body. Forgot to say my cancer was IDC with no node involvement but had spread to the blood vessels surrounding the lump. Maybe because there was no node involvement they decided I didnt need the chemo.

Would love to hear from anyone with similar story … x

Hi Honey,

I am 39 dx dec 07 with IDC 5 o’clock position right breast just underneath the nipple. 1.8cm grade 2 er+/pr+ HER2 negative. Nodes and margins clear. I was initially advised chemo very likely but when it came dowm to it as no spread the only benefit of chemo for me would have been to shut down my overies so I gad WLE/SNB am now on 5 years tamoxifen 2 years zoladex to shut down the overies with oopherectomy when the zoladex finishes (or before if I want) and just finished 19 radiotherapy.

There seems to be so many similarities yet our treatment programmes can vary so much. Hope the info helps. Try not to worry but if you have doubts ring your BC nurse. I have found mine to be amazingly helpful and calm and even if they dont knowthe answer they have found a man who can!!

Good luck with everything. Love Shonagh xx

Oh forgot to say I went with a lump in my left breast that they drained there and then as it was a cyst and only found the BC in my right breast because specialist checked it too and he felt it straight away!!! How stupid did I feel as in the week waiting for the appointment I had been using my right breast as the one to compare the left one with. DOH!!!

Doesnt it drive you mad when people say how lucky you were they found it?, personally I would rather they hadnt found anything!!! LOL

S x

Honey
My story is identical to yours. I was dx in June last year with grade 2, 1.6cm, ductal invasive, hormone pos tumour. I’m 41. As there was no lymph node involvement they said chemo would only give me a 1% benefit. I was happy with that at the time but i wonder if it was the right decision!? I’m on tamoxifen after Rads and have my first mammo in6 Weeks.
Love Julie X

Shonagh & Julie

Thank you so much for replying to me!

Just one other question for you both - just wondering how the tam affected you.
Had my op in Sept (had my period at time) then started tam beginning of Oct so no period
Oct or Nov then low and behold it appeared christmas eve!
Have been having it regular ever since.
I was under the impression that it would stop all periods and induce an early menopause - but maybe not.

Had my first review 5th March and mentioned this to my onc but she said it was nothing to be concerned about.
Unfortunately for women in our position - every wee thing we are concered about!

I have lost 24lbs since starting tam - think it was a combination of the tam and worry.
Seem to be getting back to my old self now - and will def try to keep the weight off! LOL
Onc did blood tests for over active thyroid and diabeties - both clear.
But I do have a pain in my upper back and have had since 20th Feb - they took upper back x rays but still havent
had the results back yet. No news is good news!!??

Julie - hope the mammo goes will in 6 weeks and isnt too painfull!!

Kimberly xx

Hi Kimberley and Julie,

Blimey I wish I had spoken to you two while I was debating my treatment programme. Like Julie the difference for me in % for chemo v zoladex was less then 1% and the oncologist was suggesting the zoladex option (aparently its been used in europe as an alternative to chemo in cases like ours for yearsbut typical UK like to take their time thinking about it, I think herceptin proved that!!!)

I’m not sure about the tamoxifen question Kimberley, I was only dx in Dec and started with tamoxifen in Jan and still had a period, the zoladex shuts down the overies so I am waiting with baited breath to see if it stops it this month or not. Sorry not a lot of use there but from other threads it does seem you still have periods on tamoxifen.

I lost a stone and half too same as you think it was stress (I did have it to lose!!!) and so far two months of tamoxifen and no exercise yet (only just finished rads and a bit tender) seemto be keeping it off. I am hoping when I get back to being active I will start to lose again. i’m the big 40 this year so am quite determined.

Julie same from me too, good luck with the mammo, I’ve got my first 3 month check on Monday and am a bit nervous so hope all goes well for you.

Be good to yourselves ladies. Love Shonagh xx

Hi Shonagh and Kimberly
I also lost a stone and a half in the 1st 6 months. Aparently that can happen with rads?! ive now put on about 8lbs . Your tamoxifen questions i think i can answer. My periods have almost gone, just extremely light for about a day, sometimes two days. Thats normal apparently, and my onc said its better they stopped altogether! Shonagh i had uppeback pain which started the week after my rads finished. i’m convinced it was the rads although noone has the same opinion. I had a scan which showed nothing!
Good luck to you both, love JulieXXXX

Hi Kimberley, my history almost identical to yours, dates and all (even had a cyst which I did find but didnt notice the cancer) but I am 55. the radiologist told me I didnt need any chemo, the oncologist said I could choose it, and it would give me a 5- 10% survival increase. Its a complete mystery, doctors dont agree on it all. Its down to statistics, and how much you believe them maybe. However they all do agree that (for breast cancer) the order of importance;
surgery
radiotherapy
tamoxifen
chemo

I often wonder if i should have gone through with all this chemo. It was worse having a choice than being told I had to have it.
My cancer was oestrogen positive, was yours different?
would like to know what you think…love, Zoe x

I was dx 17.01.08 after finding lump at what I think is probably referred to as 2 oclcok position (on the outside of my righ boob fairly near the armpit - feel free to confirm or correct on this point). WLE and node sampling.

Prior to surgery was advised treatment plan would most likely be surgery/chemo/rads then tamoxifen and/or herceptin depending on status results.

Post op surgeon advised 16mm grade 1 7 nodes taken all 7 clear but 1 inter-mammory showed cancer cells.

After surgery oncologist advised awaiting lab results but advised possible treatment as chemo then rads followed by tam/herceptin if necessary.

As I had a positive intermammory node I was classed as an unusual case so full team (oncologist/consultants/surgeons etc) would discuss the chemo issue. The upshot of this was that the rads should deal with the ‘stray’ into the inter-mammory node and they would blast the armpit and neck to be sure but the majority opinion was that I was node negative so no chemo necessary. ER + so put on Tamoxifen for 5 years and a full dose of rads ordered.

Have to admit I was the same as you … I had decided that I was in for the whole kit & kaboodle so I was going to be OK and the cancer wouldn’t stand a chance … then they took away the chemo which was like taking away one of my weapons.

They explained that the benefits of chemo in my case were minimum and greatly outweighed by the down side of chemo. They also reassured me that the rads and tamoxifen would do the necessary and that chemo would only really have been needed if I had been node positive.

Hi Zoe - I take it from reading your post you actually had chemo?
Yes I am ER+ too - it just baffles me the difference in treatment around the UK.

Got my results from the upper back x ray and glad to say they are clear!
That was one big worry for me.
A friend of mine had a reoccurance of BC and it came back in the lungs so he - yes it was a he! - told me to
make sure that if I had any pain at all in my chest or back area to insist on x rays.
Must say when I mentioned it to the Onc she had no hesitation in ordering up all the relevant tests.

Hope all is well with you… Kimberly x

Hello Lilacblushes,

Thanks for your comments - really informative.

That is an unusual one I must say - only been on this site for past 3 months but havent seem to
come across your dx before.

I have come to the conclusion that you are told to expect the worst at first onc appointment after surgery and
then if you dont get certain treatments its a bonus. This wee discussion has really put my mind at rest - I must say!

Take care … Kimberly