What were you do?

I apologise if i am posting a repeat subject but i cannot find it on here!
I am a (young!!)44yrs with DCIS and ductal Ca type Luminal A grade 2, 100% ER positive, all other hormones negative. Fit healthy, active, no other major PHM or family history of breast cancer.
Treatment so far, lumpectomy and sentinal nodes biopsy. I(5) micro met found and tumour on 3 borders. Core tumour 1.2cms, slow growth.

Next phase:
Option A:Tamoxifen, Zoladex, mastectomy
Option B:Chemo (7 months), mastectomy, tamoxifen, zoladex

All the papers, advice and experience seem to give me little to base a decision on as this category has only been recognised since 2001!

My plea for help: Do i choose option A, the ‘easier’ of the 2 routes and regret it or choose option B and go through very difficult treatments which are not necessarily needed? How do i choose, am i too young not to have chemo or am i too well to have such a radicle treatment? Even my doctors and nurses have different opinions!

The experts consensus paper on breast cancer(Goldhirsch 2009, annuls of oncology) table 3 on page 1324 sums up my choice as ‘Patients preference’.

So, please could you give me your choice with a summary of why you would choose that option?

Thank you very very much, i am tearing my hair our trying to decide!

i think if you have had cancer in your node then chemo would be the recommended route regardless of any other issues.

if you have micro mets in your sentinel node this means potentially it could leave the breast and travel to other parts of you body and that is whether the chemo comes in and hopefully blasts it to buggery.

there are a couple of algorythms you can use to put your details into and see what the outcome is with and without chemo… but some people dont want to know so only do it if you are ok about what the results may be… the adjuvant one says you need to be a health professional to access it but you dont.

lifemath.net/cancer/breastcancer/therapy/index.php
adjuvantonline.com/online.jsp

Lulu x

Hi Pawplay

Don’t know if this helps, but I was due to have mx with immediate recon, then chemo and tabs. Unfortunately the four nodes they took at sentinal were all affected so I’m having chemo first. I couldn’t have a lumpectomy as I have two tumours in the same breast. Both have some dcis and both are invasive.
Im 49 and been told I’m young to have bc. I feel more secure in the fact that I’m having chemo because the cancer has the potential to spread, and I dread the thought that there could be some stray cells lurking somewhere that are too tiny to be picked up by the scans etc.

Not sure if it helps as I said,and only you can make that difficult decision, but that’s my experience.

I wish you well; it can’t be easy.
Good luck with your treatment whichever you decide.

Hi Ladies,
I feel as though l am missing something here, (peachy mother yesterday) so perhaps you could explain…
I see most including me who had node involvement have had lump/mx first then chemo, but you seem to be saying the opposite Lulu.
When l asked if l could have chemo first l was told no. The onc would not agree with this, and insists the operation is done first! is it a case of different oncs?

A lady l know had 5 lumps in one breast, she was told she would need chemo first to reduce the size of the lumps, she refused saying she wanted the lumpectomy first, then the chemo. They agreed and she had the 5 lumps removed 10 days ago, and waiting for results as to whether they got clear margins.
Must say i would have gone along with the onc. feel as though we need to put our trust in these people.
Love
Sandra x

I’m glad someone else has mentioned micro mets. I had my results on Wednesday and was told that they found a few single cells in my snb. They said there would be no need for further surgery as they would either die out naturally or the chemo would zap them. I have to say that the thought of having a few single cells floating about has made me determined to have the chemo (even though I would so much prefer not to). My consultant also told me that the cancer, which they presumed was ductal was actually a mixture of lobular and ductal (grade 2 & 3). He didn’t seem to be concerned about this as it is treated in the same way but it concerns me that i have only been mammogrammed on the other breast and I understand that lobular is hard to pick up. I just Feel my confidence in my breast team sliding a bit - even though I range my bcn and she said all was fine. I see the oencologist on Wednesday so I guess I need to write a long list noting all my fears.

I would go for the chemo- you need to give yourself the best possible chance, and it only takes one cell. You don’t want to live to regret your decision.

I too would have the chemo. It isn’t pleasant but is the best way of destroying any rogue cells.

Julia xx

My view is to go for the chemo. I 36 , no family history, fit well active prior to bc dx in march. Grade 3 ductal 17mm no evidence of spread to nodes or vascular. Low oestrogen positive at 4/8. Had lumpectomy and now having chemo. It’s hard but doable and I would have been beating down their door if they had told me I couldn’t have it. Given my v v v v low risk of getting bc in first place, for me any thing I can do to beat even a low risk of recurrence or spread is worth it. I am in the middle of the treatment which most women find hardest , chemo, and again even at this point I wouldn’t change my mind. Yes it is a fair chunk of time and harsh treatment but I hope it will pay dividends plus also help me get some peace of mind back and settle back to my life knowing I have done all I can. Tho then there’s the joys of tamoxifen…! Hope this helps, good luck, vickie

I agree with the others and would go for the chemo. Sadly feeling well, and being fit and active seems to have little bearing on how the cancer behaves. Give yourself the best possible chance. Best of luck with whatever you decide.

finty xx

I agree with all above in definately ‘opting’ for chemo, I am 42 grade 2 IDC, 30mm. I am half way through chemo, its not nice, but much better than spending the next years worrying if a rogue cell got through - belts and braces.
Good luck in whatever you decide.
Marguerite

I would have the chemo because of the micromets.You would be devastated if your cancer came back but even more so if you hadnt given yourself the best possible chance of defeating it.
Good Luck
Vx

hello
I agree with the others. Chemo isn’t pleasant but its doable and personally, I can’t rest until I’ve done everything I can to avoid it coming back.
At 38 (13 years ago) I had a grade 1, 1cm invasive dc with extensive DCIS, no nodal involvement. I had a mastectomy, axillary clearance and tamox. There was no indication that anything else was appropriate.
It did come back even tho I had done everything - I dread to think how I would have felt if I’d turned something down.
This time we have thrown everything at it and thats the only way I can deal with it, psychologically.
I would advise you to have chemo if its being discussed, and blow the little buggers to bermuda!
good luck
monica xx

I agree with the others and have the chemo.

Sandra i have sent you a pm… but yes all oncs seem to have their own ideas… but if you are not happy with what they suggest you dont have to go along with it…

however at each hospital it is usually the multidisciplinary team that has a discussion together and decides on the best option for you… but it is about choice and if he wasnt giving you the choice he should be able to provide an evidence based rationale for saying you cant have chemo first.

generally speaking chemo first is more effective for pre menopausal women with higher grade tumours and more effective after surgery for post menopausal ladies.

Lxx

In terms of treatment ILC and IDC are treated the same with surgery, Chemo, rads hormone therapy in whichever order deemed most effective this is usually decided within the multidisciplinary team approach as mentioned before. I wasn’t keen to have Chemo either, my surgeon sat me down and went through adjuvant online with me to explain, and although tough, I echo the comments here thinking that I have to do what is recommended to feel I have done all I can. But you need to understand why a specific treatment is suggested for you. I hope you get the opportunity to discuss this further with your team. For ILC follow up, my onc has recommended MRI, due to the problems with detecting lobular cancer with mammos. Good luck!

Hi I would agree with others and have the chemo.I had grade2 1.7cm and had 6 chemos,it wasn’t very nice but I’m almost 2 and a half years on now and feeling fine.

I found this on Cancer research web site.

Treatment before surgery
Chemotherapy before surgery can make a tumour smaller. This can mean you need less surgery. For example, you may be able to just have the cancer removed instead of having a mastectomy. But you will still need surgery, and sometimes radiotherapy or other treatments after the chemotherapy. Your specialist may suggest chemotherapy before surgery because they think it may also help to stop your breast cancer coming back.

Treatment after surgery
Chemotherapy after surgery is called adjuvant therapy. You may have this treatment because

The lymph nodes under your arm contained breast cancer cells
You had a large primary cancer in the breast
Your breast cancer cells were high grade (grade 3)
Your cancer cells did not test positive for hormone receptors and so are not likely to respond well to hormone therapy
Doctors use chemotherapy after surgery when they think there is a risk that cancer cells could have broken away from the tumour in the breast and spread to another part of the body. Chemotherapy can kill these cells and so reduces the risk of the cancer coming back

Best wishes Mel xx

I was given choices as well with my treatment and understand how you feel i didn’t want to go down the chemo route and didn’t know why i should have to as all my nodes were negative but my lump was grade 3 and it was slightly over the size for non-chemo being 2.6 cm so when they put my details in the adjuvant on-line the benefit was something like 8-11% better with chemo than without so to me any benefit was my decision -maker . I’m now at chemo no -5 ( i am having x6 FEC) and 20 Rads and tamoxifen and cant believe how quickly it has gone and i have been really well ( only FEC no 3 made me sick and once i had stronger anti sickness tablets i have been OK)I am pleased now i have had chemo because i would have felt that i wasn’t doing enough and would have constantly worried that 1 little cancer cell might have escaped so be brave and blast them into oblivion.

I agree with all the posts on here, go for the chemo. Go for everything offered, I do not want to look back in years to come and wonder “what if”.

Whether chemo is offered before or after is very much an individual decision that they make for each person based all the facts they have about the cancer and you.

Although choices can be good, I personally would rather let the experts make the decision for me, because if I chose the wrong one I would never forgive myself.

Thank you everyone for the varied thoughts with a definite core theme of …chemo!
The ‘What if’ question really is the key for me!