I’ve just been reading through other posts and now wonder if i’ve been offered the best treatment. I was dx with a 16mm grade 2 tumour, no lymph nodes, hormone positive and HER2 neg. I had a lumpectomy and i’m going through rads at the moment. Chemo was never ever discussed. Another lady mentioned that all tumours over 1cm are offered chemo at her hospital. What are other experiences with this. Should i be asking my oncologist???
Love Julie X
Hi Julie
I always think it is best to check things out with your medical team if you are concerned and then they can explain to you the reasons why or why not…
takecare and best wishes Lucy XXX
Dear Julie,
I was diagnosed in June and had lumpectomy and sentinel nodes removed in July. I was told prior to the op that if the tumour could be removed with clear margins and there was no spread to lymph nodes I would not need chemo but “only” rads and tamoxifen. I had a 15 mm tumour and unfortunately both sentinel nodes were positive, hormone pos and HER2 neg as well - I am now undergoing chemo prior to full axillary clearance and subsequent rads etc.
In any event I think you should speak to your onc about your situation.
All the best.
Anneli
-x-
Hi Julie
I may be the person who mentioned that my hospital recommended that all tumours over 1 cm were advised to have chemo.That stat stuck in my brain. It could be that as I had lymph node involvement also, this is why they recommended chemo. It was a blur at the time, 4 yrs ago, but all I remember is that I had a 2 cm invasive tumour and 4/18 nodes positive. I really didn’t question their advice at the time as I was completely naive. It could be that as your lymph nodes are not involved, that this is an entirely different situation to mine.
Your prognosis is really very good - no lympj nodes involves and HER2-/
You may want to talk to your Oncologist about chemo, but your dx does not seem to warrant it.
I was dx 4 yrs ago and my bc surgeon never talked to me about lymph node involvement and the possibility of chemo, so it came as a great shock. I am doing well now.
Liz.
Hi Julie, i had a 1.8cm tumour, grade 3/2 had to have full mastectomy due to lack of clearance, no lymph involvment, i did not have to have chemo, i am also hormone receptive, i didn’t need rads either, been quite lucky i feel, if your worried ask to see your onc again so he can explain fully why you haven’t been offered it, i asked and was told i had a good prognosis and with hormone treatment it gave me an equally good percentage, i may have benefitted by a futher 2 percent, thats all.
Alisonxxxxxxxxxx
Julie,
I was dx Dec 06,lumpectomy, further op for margins, 5 weeks rads and tamoxifen. Chemo was never really mentioned and I go with the onc / consultant. My lump was grade 2, 12mm, sentinel node biopsy with none affected. I was told because of size and grade it was early .
Take care
Shorty2 xx
I am in France so they do things abit different. But i was told before my lumpectomy that if the size of the cancer reached 1.5 cm then i would have to have chemo regardless of node spread or not. As it was it was exactly 1.5 cm and one node pos, prog pos her2 - so had chemo etc etc. He said the node wasnt important because it was only one and it was encapsulated so they knew non had broken off and spread.Had 3 X FEC and 3 X Tax which has left me permantly bald!
Hi Julie
I periodically ring my bc nurse and ask her to go through again why I wasn’t offered chemo so you are not alone. I was told lump was invasive grade 1 and 28mm. After WLE and lymph node sampling, it was found to be grade 2 but 20mm. I was given rads and tamoxifen. I was initially told that, because of my age, 44, if there was a 1 % chance of it coming back, I would have the works and now worry that they haven’t given me enough treatment. I have been reassured that the MD team consider chemo is not necessary. I know exactly how you feel. I have even gone down the "have they read the right notes " road.
Love
Debbie
hi julie i was diagnosed in june2006 i had grade 2/3 the tumors was 5cms no lymph involment and clear margins but i had to have chemo, rads and now im on herceptin. i was devasted to hear i needed chemo as there was no spread and they told me it was because i was young(42yrs) i dont know how they decide who its best for and who not but looking back now im glad ive thrown everything at it. they may of decided i need it because i am her2 + and what ive read you need to have chemo before getting herceptin for the best effect. everyones treatment is different and doctors have different ways of treating people. im sure your onc is treating you in the best way take care xxx suzee
Hi Julie
I was dx in Dec 05 - 1.4cm lump - had WLE with clear margins and no lymph node involvement and no vascular invasion. Tumour was grade 3. My onc said I was “borderline” for chemo - I probably didnt need it but as I was 42 at the time he said it may be prudent .
I chose to have it and sometimes I wonder if I should have as it nearly destroyed me mentally and physically and threw me into an early menopause and I often think I probably did all that for nothing! Things are not always clear cut and oncologists have different opinions.
Try not to worry if they had been in doubt they would have said so.
Love Alise x
I too felt like you Debbie, i didn’t even get rads, and i am 45 , but now, well, after getting it explained to me when i was in a much calmer frame of mind, well, i do feel that i am having the best treatment for myself, only time will tell, did have to fight a bit to get the ovaries removed, but just waiting on that now, i am glad now that i didn’t need the extra invasive treatment, i had a bad enough time on tamoxifen and i take my hat off to everyone on here who has had to go through chemo and rads, as Suzee says, i think they do try their best to give us the best treatment, just hard to take it all in, especially when everyones treatment is so very different.
Alisonxxxx
Me too Alison. I feel guilty bringing the subject up when I was so lucky not to need it. Have been on Tamoxifen 11 months and have app today with the consultant to see if they can do something else as I feel so out of sorts on it. I rang the BC nurse last week in floods of tears and she said I can’t go on like this. My joints ache, I can’t sleep, either freezing cold or boiling hot and some days I can’t stop crying. Oh and I have no concentration and feel like I am going insane and don’t even mention sex!!! I don’t know what they can do, however, and would chop my hand off if they told me it would help prevent cancer coming back so think I will have to like it and lump it…Lol…
Debbie
xxx
Hi Debbie, we are so alike i feel exactly like you do, even on Zoladex, not so many hot flushes though!!!
Alisonxxxxxx
Hi Julie
I was told there are 3 reasons why they recommend chemo - one if the tumour is over 2cm, two if you are “young” and sorry but I can’t remember the third because I only met the first two conditions. You should definitely ask your oncologist though. I didn’t ask anything at first, just accepted everything they told me. Now I go in there armed with a list every 3 weeks!
Debbie/Alison - I felt exactly the same a week ago. I’m on Zoladex… I don’t know if this will help but although I felt my symptoms (constant crying, indifference to everything, irrational and irritable) were completely hormonal, I felt a million times better after talking to my BC nurse. Since then it’s like a weight has been lifted and I’m back to my old self again (well old self with no hair, hot flushes and eating for Britain anyway!) If I get that low again I am going to ask for counselling.
Jo xxx
Hi everyone
BC nurse apparently thinks I’m “a challenge” and she doesn’t know what to do with me. Don’t know wether to be insulted or laugh. Took me 20 mins to find a car parking spot at hospital today by which time I had burst into tears. Consultant prescribed megace, I can’t remember anything he said and daren’t ring bc nurse again. I had to have a blood sample taken because I mentioned I keep bruising for no apparent reason and consultant confirmed that tamoxifen can affect your blood platelets and it is possible that the tamoxifen has damaged my eyesight also (keep getting blurred vision). Wish I had taken someone else to listen as my head is full of cotton wool.
Hope I haven’t put anyone off tamoxifen but suspect I have. Regardless, I am taking the bloody things.
Debbie
xxx
Hi
I think we all worry whether we are geting the right treatment. I am triple neg, I had a grade 2 9mm lump last year and had e-cmf for 7 months then after two months I found another lump, that was grade 3 15 mm,same breast…so had a mastectomy this Feb and then Taxotere chemo and rads…on the face of it it all seems like a lot of treatment but then I concider that the e-cmf didn’t touch the second lump… I have no node involvement either, but I gather its the triple neg status that changes everything for me.
Both my lumps were concidered to be thickening as well, according to the ultra sound…I just think its not an excact science…
Its such a worry what ever our status, with this blasted disease…
x
It certainly is Jax, and if one more person tells me what i a positive person i am again, i will swing for them!!! think its a case of got to have it to know it with bc, what a life eh???
Alisonxxxxxxx
Never mind being positive Alison, my Tamoxifen flush and Tesco shine tonic hair spray makes everyone comment that I am looking “really well”. Would love to tell them the truth but really they just want you to say you are fine when they enquire. I am probably the same. Also, “you are looking well” is sometimes polite talk for “haven’t you put on loads of weight?” Lol
Debbie
xx
Thankyou all for all your feedback!
I do feel reassured by your comments. You all sound very level-headed and knowledgeable. i guess i should be grateful that they think i do not need chemo!
Thankyou so much again
Love Julie X
I am waiting to hear when I start rads. Im 41 next month and found out in Aug 07. Had lumpsectomy and lymphnode removal. Have invasive lobular 11mm which didnt show as a lump, more like a dinge! Even then only noticed in bright light with arm above head!!! On tamox one week tomorrow, nowt yet thankfully! I was told no chemo required.