Hi Kirstymarie,

I am sorry to hear that your doctor never mentioned this. This is the trouble with Google and it is why we advise people not to consult "Dr Google", when they start out on this journey. Most of the information is aimed at the more spectacular cases, is not appropriate to you, doesn't supply any answers and yet it manages to scare us even more. If you want to find out more about this type of cancer, why not phone one of the nurses on this site, for advice and more accurate information? Their number is 0808 800 4040 and they are available 9 - 5 Monday to Friday.

Please keep in touch. As you know, we are always here for you.

Kind regards,

Jolamine xx

Thank you so much x

HI Kirstymarie,

I know that you don't want to have chemo, if you can avoid it. Perhaps you would be better to consider having it, when this is such an aggressive type of cancer - maybe worth talking about with the nurse, if you do decide to phone? Having said this, I must stress that I am not a doctor, but talking with someone else may give  you a better idea of why your oncologist is recommending chemo.

Kind regards,

Jolamine xx

HI Kirstymarie,

I know that you don't want to have chemo, if you can avoid it. Perhaps you would be better to consider having it, when this is such an aggressive type of cancer - maybe worth talking about with the nurse, if you do decide to phone? Having said this, I must stress that I am not a doctor, but talking with someone else may give  you a better idea of why your oncologist is recommending chemo.

Kind regards,

Jolamine xx

Ok hun thanks x

HI Kirstymarie,

It's been a while since we were in contact and I wonder what you decided about treatment? I hope that you are doing well.

Kind regards,

Jolamine xx

Hello there. Iv had 3 surgeries now :/ lumpectomy and full axillary clearance. Then lumpectomy again as not clear margins and then mastectomy on 14th Feb so just recovering at the moment. I haven’t seen anyone again yet. But I know I defo am gonna be having radiotherapy but think I won’t need chemo xx

Hi Kirstymarie,

My, it sounds as if you've been having a time of it! What a pity that you didn't get clear margins after your first surgery. Can I ask the reason for your mastectomy after 2 lumpectomies - did they not get a clear margin the second time either?

I am sure that you feel glad to have all of your surgery behind you now and hope that your recovery is going well. Did you not need chemo after your mastectomy, or did you eventually decide not to have it? I'm sure that you'd be very relieved if you didn't need it.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Yeh not clear margins again. He said can do a lumpectomy again but might not get clear again. It’s so far over 77mm. I couldn’t have reconstruction yet. Got to wait a year which was up setting and still coming to terms with that. He said because of having to have radio. I said to him if the  percentage is low with the chemo I will properly refuse it. He said I would prob have a low onco score. But I suppose will have to wait to see what the oncologist says when I finally meet one as only met my surgeon so far.  
xxxxxx

Hi Kirstymarie,

The mastectomy was probably the wisest decision then. I faced a similar question when I had my second bout. I opted for a double mastectomy and have never regretted it. Unfortunately, I couldn't have reconstruction, due to scarring from previous, non-cancer-related surgery, but I manage fairly well with an assortment of prostheses for different activities. I am surprised that you haven't had your onco score yet - here's hoping that it is low. I expect that you'll see your oncologist sometime within the next month.

It can take longer than a year to get a reconstruction in many areas, so don't be surprised if this happens.

Kind regards,

Jolamine xx

Hi I had a 7.5cm lobular tumour removed on my lumpectomy did not get clear margins, surgeon said could not remove more as he had taken out 9cm including margins and anymore would look abnormal, so next op was a mastectomy (done 4weeks ago).  When I saw the oncologist they showed me the PREDICT tool so i could see how advantageous chemotherapy would be.  Treatment plan chemo EC and Docetaxel followed by radiotherapy and then ET + abemaciclib.   Surgeon told me that no reconstruction for 12 mths due to Chemo and Radiotherapy.  I looked at the reconstruction options and am on the fence on that one, the operation options seem horrendous if you want to get a good likeness with your other breast the best option is transferring your own body tissue from another site.  My hospital does not do a oncodx score or any form of gene test :-(.  Pathology report showed my Nottingham prognostic index to be 5.5, do you know what your is?

They said they might not do info type for me but will just wait and see. Oh did you bless ya. Yeh I know reconstruction can take a while. But defo want deip done xx

thank you 

Kirsty xx

I have been told by many that chemo doesn’t help much with lobular. So if my percentage is only say 2-4% more added then I wouldn’t do it. 
I am definitely going to do reconstruction the diep flap from stomach tissue. It’s 6 hours but worth it. And will prob get my other breast sorted it also at the same time. I’m 39 and can’t see myself with one breast for the rest of my life. That’s just me. 
never heard of the Nottingham prognostic index sorry hun x

So young Kirsty, understand why you would want to go this way.  I hope that when you go for the reconstruction that all goes well. XX  I may look at a lovely tattoo instead as I am 62.