DO I have chemo or not with my diagnosis

Has anyone had the same diagnosis, and what was your decision? I have been told that the cancerous lumps they found in my breast, which don't appear to have in fact gone to my lymph nodes, like first thought, as they couldn't find it when it went to the lab, which are a grade 2, puts me at that in between diagnosis, of whether chemo therapy will actually be of any benefit to me. Obviously if I don't need to have it, then that s fantastic, but just makes me think, if I don't have it, is the cancer more likely to return later, or do I put my body through chemo, for potentially only 2% extra security of stopping the cancer returning? Help ? What did you do ?

[Gracie66]

I was in exactly that position 2 years ago. I had oestrogen positive tumour that had not spread to the lymph. the oncologist laid it all out on the table for me, chemo was an option, because my Oncotype score was also lower than 20 which meant usually they dont even offer chemo, but he said differing opinions meant it was an option for me if i felt i should do it.. he stressed that the percentage of help chemo would give was minimal but still in my head i wanted to throw the kitchen sink at this and be rid of it forever, so i opted to do it. it (and will probably be for you as well, if yours is the er + type ) was a less aggressive form of chemo, 8 x treatments and i didnt lose my hair. 3 days of meh every 3 weeks, but mostly i was able to get on with it and it was soon over. There are lasting side effects of tiredness and sore joints, not sure to be honest if that is the chemo or the Tamoxifen i'm now on, or both. Good luck with your decisions. I will never know if it helped or it didnt, but mentally i wont be able to beat myself up later if any of it makes a reappearance. xxx

[Hidden in reply to Gracie66]

Thank you, the oncologist said if I do have it, it will only make my chances, of it coming back to 2% better, she also said that the side effects of chemo, could possibly be higher , so I'm just so confused, obviously I would rather have it, to be sure, just the same as you, but ......it's just so hard to know what to do....

[lynnedpope66]

Hi, I had lobular cancer in my left breast, had a mastectomy, lymph nodes clear but result of oncatype test came back with a score of 24 and showed some signs of vascular invasion. My oncologist wouldn't say whether or not I should have chemo it was my decision. I chose to have it as a belt and braces approach and that I know I have done all I can to hopefully stop it returning. I had 6 x fec once every 3 wks and escaped very lightly with minimal side effects. It is a hard decision to make and I wanted them to tell me yes or no but they wouldn't. At least I know I couldn't have done any more, will now be on tamoxifen but it is manageable and u do get through it! Good luck! Xx

[jackearls1000 in reply to lynnedpope66]

Lynnedpope66 ....did you lose any hair? with your treatment ...my BCN said id probably be offered 4 months of treatment .,,as belt and braces approach...how was the chemo and did you have radiotherapy after? xxx

[lynnedpope66 in reply to jackearls1000]

Hi, I used the cold cap while I had treatment. My hair did get thinner by about half but all over not in patches. I have got a wig which I wear when I go out but more because I can't blow dry it at the moment. I also had some new growth before treat had finished. I had 6 x fec once every 3 weeks, it was ok and I think I escaped quite lightly. No sickness at all, a bit fuzzy headed at times but that usually cleared after first week and a bit more tired but that's all really. No, I don't need radiotherapy. Am now taking tamoxifen no side effects so far! It's been about 3 wks and just starting the add aspirin trial so fingers crossed! Let me know how u get on! Xx

[Jennymary]

I didn't have chemo, just lumpectomies, 3 weeks radiotherapy, this was at the end of 2013 early 2014, mammograms in 2014/15/16 have all been clear, good luck with your decision x

[mrsorangecat]

Hello, I didn't have chemo, i had a mastectomy then 15 rads and started 10 years of Tamoxifen for my grade 2, strongly estrogen positive lobular carcinoma. There was no lymph node involvement and Oncotype came back as low score of 9. Will they send your tumour for Oncotype testing? Hope so as it makes the decision a bit easier for you.push for it. Good luck with whatever you decide xxx

[Hidden in reply to mrsorangecat]

I don't need to have radio therapy, it's weird to think that ive just had cancer, and I don't need further treatment, except the tamoxifen, I can't get my head round it. Obviously, it's good news, but do you know what I mean, when I say, I feel a fraud, as I don't need other treatment, Sod's law will say, that I will be the one with the cancer that returns, so ...... should I have the chemo, to make sure.....???? Hard decision....

[Dragonbear]

Cash - I'm in the same position as you , diagnosed in April this year at first mammogram with cancers in four place in left breast , so had I mastectomy on May 10 and immediate reconstruction with strattice . ER positive and HER2 negative so just now taking tamoxifen for five / ten years . It was a relief not to have to have chemo but now I'm thinking would it have been better to have had it in a belt and braces way ? I'm like you thinking it's all been a bit easy compared to many of the experiences I read about here . In my head I think I'm "cured " but am I going to get a nasty shock in the future ???.

[Hidden in reply to Dragonbear]

That's precisely it, obviously to get away without having chemo, will be amazing, but to have that feeling long term that I did t have chemo I could of done more,'and that the cancer could come back is worrying me. At the same time, I think like you, to put myself through all of that with chemo which could leave me with ailments, why would I, when the odds are so small .... oh good grief, I just don't know, I suppose I'd better wait for the result from America to come back, I just hope that confims a decision either way .

[Buddybear123 in reply to Dragonbear]

Hi I was diagnosed with exactly the same in April, her 2 negative, it was in 1 lymph node, they have me the choice of I wanted chemo but I decided against it, now I'm always thinking is this gonna come back and bite me on the backside 😥

[Buddybear123 in reply to Buddybear123]

Was a very small lump in breast so just needed a lumpectomy

[Debs1962]

I think you need to think hard about it, chemo is not to be taken lightly and has long lasting side effects, it wasn't offered to me, I had mastectomy in 2015 then letrozole tablets, I could of had lumpectomy then radiotherapy but opted for mastectomy as could avoid radiotherapy as didn't want side effects of that, mine was ER+ no nodes involved one tumour 25mm

I have radically changed my diet and life style, think that helps me feel like I am doing all I can to stop it coming back, positive outlook I am sure helps a little

Good luck xx

[Aussielouise]

I too didn't have chemo. Like you I was told that it would only give me an extra 2 or 3 percent chance of preventing the cancer coming back and that the risk of the chemo causing complications was higher. I had six weeks of radiation and a lumpectomy. I'm now taking tamoxifen.

[Jowigs]

I was ER+ and her2+. No node involvement and tumour only 1.5cm. I had mastectomy as they couldn't get clear margins and was then given the option of chemo +herceptin. My oncologist said that without the chemo I had a 92% chance of still being around in 10 years, (I was 47), and with chemo it went up to 94.5%. Only 2.5% but I took it! He put me on a low dose, weekly for 12 weeks. It wasn't pleasant but also wasn't as bad as I thought, very doable. I had 18 months of herceptin injections which were nothing more than an inconvenience and now have 10 years of tamoxifen which is a necessary evil. My thinking was that I wanted to have tried everything, so that if it does come back, I know I did everything I could to prevent it. However, I have a friend who didn't have the chemo, she just couldn't face it, and she's doing well too. Wishing you all the best with your decision. X

[Happyrache2]

2 percent sounds like a very low percentage for improved prognosis, to be honest. I was diagnosed with oestrogen receptor positive breast cancer at the beginning of march and have had a lumpectomy. The cancer was far bigger than they at first thought (3 areas almost joining up, 6cm in all). I was told I might need chemo, but they said if the onco type is a very low percentage, it isn't worth going through it. Of course it's personal preference. Mine showed no benefit, so I didn't have to make the decision, but I did decide that if it was 2, I wouldn't put myself through it. It is a very hard decision, and I was lucky I didn't make it, but that is how I would work it out in my head. But I'm also having currently having radiotherapy (3 weeks), and a mastectomy in September, so potentially it will all be gone anyway. Talk it through with your surgeon again, and I'm sure he will help you make the decision.

[Sandy108]

Hello.!

I had been diagnosed with pre cancerous lumps, followed by mastectomy after which they found two cancerous lumps stage 2 and Oestrogen+, I was referred to oncologist who suggested a Oncotype test which show the percentage of risk of it returning, if it comes back above 30% they suggest chemo, mine was 28%, had the option so went ahead with 6 cycles of FEC.! I felt I wanted to know i had done everything possible to lessen the chance of it coming back.!If

There is no right or wrong decision, you do what is best for yourself, sending you lots of hugs xx

[Hidden in reply to Sandy108]

They have told me 25% and they will recommend chemo, still awaiting the results of the oncotype test, so will have to wait I suppose and then think it through again, feeling more likely to have the chemo if border line though, just so I can say I did everything to prevent it.

[NatCee]

I'm in the same position. Diagnosed 6 weeks ago with ER+ HER- and no lymph involvement. 3cm breast cancer, grade 2. They're delaying my surgery while they try and shrink the mass - so the regime was hormone therapy - and probably chemo. I insisted on the Oncotype DX test and I'm glad I did. It came back with a score of 6, so the chemo side effects will more than outweigh the benefits. Am now on monthly Zoladex to put me into menopause (I'm 45) and letrozole - no side effects so far but it's only been two weeks. Very relieved not to be having chemo!

[chromodoris]

Hi everyone. I'm new on here but read this thread with interest. Just been diagnosed with invasive ductal carcinoma and having a mastectomy in a couple of days. I could have had lumpectomy but this is the second lesion in my left breast so I opted for mastectomy. ER+, HER2- , so far so good. Don't yet know about nodal involvement, although the suspicious one they biopsied turned out to be clear. But I have a gut feeling that there are nodes, because I get an intermittent ache in my armpit.

As I don't have any family, and I'm now over 60, I don't think I'd want to go through chemo, but guess I won't know until I have the staging post-op.

I'm pretty pragmatic about these things, but all the waiting to know exactly what I'm dealing with is a nightmare. I'm not sure if it is better or worse because I used to work in a medical field...

[Boobybooby]

I wouldnt have it. Mine was in lymph nodes so had too. My sisters didnt affect her lymph nodes so she had lumpectomy and radiation. I was quite poorly with chemo. And my sister was fine. Its just the tablets that hurt our bones now. Hope this helps. X