chemo or no with micro metastasis

Thankyou for the replies! 

Hi @carlyleo,
  I was also diagnosed with Lobular b.c. back in September, I'm now on hormone blockers too, ( after bilateral mastectomy)  can you tell me please how your Letrozole affects you?

 I am on Exemestane (Aromasin) and finding the bone aches bad, the sweats also knock me around & trouble sleeping, but I can put up with it ( better than getting cancer back)  but just wanted to ask?

Good on you for your trying to loose weight and healthy lifestyle, it will really help  :) <3

Hi COnfetti I hope all went well - I was diagnosed last Dec and had a similar dilemma with stage II Early invasive breast cancer which was HER negative and PR and ER positive. I had a lumpectomy and one sentinel node removed which had about 7 micro metastasis which were all encapsulated . The tumour was a bit bigger than expected but margins were clear. After being told initially by the surgeon I would only need radiation and hormone blockers there was then some discussion at the multi disciplinary team meeting about chemo. It took 5 weeks to get an appointment with my onc ( this was good i was told as it possibly meant I wasn't considered a super high risk). FInally got there and he said on reflection he didn't think it would add much, about3% to  my overall 10 year survival chances. 
I came away confused as I had done quite a lot of research from good medical and scientific websites and it seemed that when nodes were involved chemo was the go.
I managed to see another onc - and he mentioned the Endo- predict test which is a genomic test and gives a clear score on high or low risk. It is also a lot cheaper than Oncotype but still expensive, about $3000 but I figured peace of mind was worth that,
To everyone's surprise I came back as high risk - only just over the marker of 3.4 but i was 3.8 and therefore at higher risk than my onc thought. We agreed I would try chemo  as i really wanted to reduce my risk of recurrence and see how it went. I had three treatments and then had a pulmonary embolism ( not fun) and so we agreed to cease chemo, which can be the cause of embolisms. I then had radiation therapy and am now on letrozole hormone blocker. 
I am still not sure the chemo was a great idea actually as even though I was " high risk" it was still pretty low on the graph and I now think that there is a lot they don't know about the long term effects of chemo on the body and mind in terms of cognition and possible accelerated ageing. So if you didn't have it I wouldn't fret as it may have been of minimal use for you. I do think that blocking the Estrogen is the key to preventing the recurrence of this type of cancer plus staying as healthy as possible. I am trying to lose weight as I am about 20 kg more than I should be and this will not only make me feel better and stay healthy it has been shown to be another factor in reducing a risk of cancer. I also encourage you to have a positive mindset and put your focus on living your life to the full. There have been studies that show that this can also help to keep us well.

Hi @Confetti. I see that your post was a little while ago and you may have more answers now but thought I would share my experience. I was diagnosed with stage 2 lobular carcinoma last year. I had a mastectomy with sentinel node biopsy and axillary sampling. The pathology showed “a few isolated cells” in the sentinel node group but nothing elsewhere. My oncologist said that this is considered node negative. Therefore chemo would not be of any benefit. I think less than 1% was mentioned. Nor did I need radiotherapy after my case was discussed at multi disciplinary level. I am on hormone blockers only. Sometimes those few little words about isolated cells are in my mind but I trust my team and feel ok with what has happened. My pathology may not be the same as yours as “micro and macro” were not words that were mentioned to me, but I thought this might help. 

Hi @Confetti
i too am ER+/PR+ HER2- 
I had a lumpectomy & 2 sentinel nodes removed, both showed activity 
1 micro metastases & 1 macro
Rad onc wanted to do a 2nd surgery, surgeon said no. I also have ‘multiple foci of lympho vascular invasion’
I had a very long appointment with my med onc & her resident on Thursday, we’ve decided to do the oncotype DX to make sure chemo will be the best way.
I know that 5 weeks (estimated) of radio will happen either with or without chemo
has the genome test been discussed with you?
I was sure that I’d need chemo given the lymphatic Mets but it’s now wait & see what the oncotype says.
realise this thread is a few weeks ago now - hope you’re doing ok with where your treatment is right now?
you are not alone x

Hi Confetti,

I'm so sorry for you, you must be so stressed.

 If it was me I'd INSIST on at least an opinion of another expert.
 Can you could talk to your GP ? ( even either a phone call or appointment)and don't hold back on expressing your concerns and stress over it all, and hopefully they  could push for a quick appointment with someone else for you? for another opinion.

GP's are better at getting you in quicker with the specialists, I've found.

That's just me, but I feel sticking up for what you want is important. It's your illness, not theirs, you should be allowed to feel satisfied with what's planned for your treatment.

I don't think it's fair.

Hugs,
Cindi xx

@Confetti
Sorry to read you're so perplexed.  Treatment plans are individual so you may struggle to find a comparison. 
Your upcoming appointment, Rads?  may give you clarity 

Take care

Thankyou @arpie I appreciate your responses, yes on the BcN but not really heard anything and they tend to be more involved if you are a public patient. Seeing the Rad Onc late this week, the Onc also doesn’t believe the Rad Onc will suggest a need for Radiation either. My Surgeon honestly kept saying everything was +/- and seemed like my cancer was so early that my needs were minimal…but my pathology doesn’t look like it’s early nor minimal. So in essence I was just posting to see if there’s anyone at all in a similar place as myself. Or similar treatment plan.
It’s just hard when you feel like you are the only one. Thanks for you help.

Have you been assigned a Breast Care Nurse?  You could ask them about it. 
Maybe also raise the issue with your Rad Onc when you see them? They may be able to explain it  better.  
Or even ring your Surgeon's office tomorrow & explain your dilemma .... they may be able to get you in to see someone else quicker ....  The Onc would have sent their report to your surgeon already, too.

I really think you need to fully understand why the Onc has made this suggestion - and only another Medical Onc can do that for you.

The her2 come back as equivocal first as it was only 2+ which is a negative clinically, so it’s her2 negative.