What to do?

Hi @Frances54
Diagnosis and all that goes with it is a shock! I assume that there is no special reason for not wishing to have chemo, other than that no-one in their right mind would do it unnecessarily? In which case a test may help (I haven't done it and others may be better placed to advise) but the critical factor is that percentages don't provide the cruncher information. If you knew that with chemo you would fall into the 4% who now won't have a recurrence but would have without chemo, you probably wouldn't hesitate, would you? The problem is we don't know. Chemo is a scary thought, but some people have found it to be less daunting in practice. I was one of the lucky ones with no nausea, no fatigue and no chemo brain during a similar chemo regimen - A/C, then 12 rounds of Taxol normal dose. Yes I did have a couple of side effects, but one at least was compounded by age (I was 67). So far (6 years), so good and absolutely no regrets about doing it, on too of a mastectomy. Best wishes whatever you decide.

Welcome to the Forum.  Sorry to see you here, @Frances54  .... but you are at the best spot for good advice and a heap of support from those who've been there already.

Where abouts are you (City/state) - we may have members nearby who can point you to various resources available to you.

I was lucky & didn't have to do chemo ...... just surgery, rads & tabs for invasive lobular BC - but I was stage 2 ...... I can appreciate your concern & shock at chemo being put on the table as part of your treatment.   Your health team will be making suggestions/decisions that they feel is the best for your long term health .... and the chemo is given as 'insurance' to mop up any 'randoms' that may have escaped .... 

@kmakm may be able to help re genome test?

All the best with your ongoing treatment - be kind to yourself, accept the offer of any assistance along the way & take care xxx

Hi @Frances54

It would be helpful if we got consistent advice from our medical team, wouldn't it? Sadly that doesn't always happen.

When making these sorts of decisions where the percentages appear small, I think it pays to consider your own personality. None of us are keen on the idea of chemo and many have chosen not to have it when it's been offered.  If you are the sort of person who is going to spend the rest of your life stressing 'what if' it's probably best to consider doing it. If you can afford the test, it's a good idea, provided you are likely to take what ever advice it provides.

It's a very tough call to make. I had AC in 2006 and worked right through. I had a recurrence (none of this comes with any guarantee) in 2016 and had TC followed by rads and hormone treatment. it has not been a pleasant experience. You really can not tell what is going to happen so you need to trust the best advice you can get, and ultimately goo with your gut. Good luck. Mxx

Hi @Frances54 , I too was offered chemo, and had no nodes involvement. The stats they gave me though were it'd make less than 2% max difference to  my 10  year outcome. If my nodes had been  involved I would have had chemo. For me, the probability of damage to other body parts 100%, and the potential benefit was less than 2%. My parents and other family members have been heavy smokers, yet no-one is offering them chemo just in case they've got a lung / other cancer no-one can pinpoint.

The other consideration I had was that we know our bodies build up resistance to medications and treatments. So, if I had chemo now, treating probably no cancer, what happens if cancer does return? what's the possibility/probability of chemo not working as well, or at all, because the cancer is now drug resistant?

I wonder if the treatments are highly recommended or just offered, because no-one can say for sure that you don't have cancer anymore.

It's a terrible place to be in, trying to decide. Best of luck with your treatment journey xx

Hi Frances. Welcome. I had a 16 - 18mm tumour, no nodes, ER+ tumour that was Grade 2 - 3. I had a lumpectomy, followed by TC chemo after a genomic test that indicated there'd be a curative benefit if cells had escaped and were looking to grow somewhere else in my body. I didn't have radiotherapy as I ended up having a double mastectomy for other reasons, and am now taking an AI.

TC is usually given to women with tumours smaller than 20mm with no node spread.

Chemo was not necessarily on the cards for me but exploring the option was warranted given my circumstances (click on my @name for deets). When the genomic test (Endopredict) came back a clear yes, on my oncologist's advice I went ahead. Not pleasant, very hard, but no regrets.

You haven't said how old you are; younger people are often treated more aggressively as their cancers tend to be more aggressive.

You might want to ask your oncologist why they are recommending this particular course of treatment for you as opposed to other ones. Ask what are the risk factors for permanent damage with this course of treatment. I'm not suggesting there are, but I think asking these questions are a good idea! Definitely ask what percentage increased survival stats would this treatment give you as opposed to others, reduced or none.

It's a hard decision when there are grey areas. Ultimately you want no regrets. I tended to parse my treatment decisions through that filter. K xox

Hi @Frances54,

Welcome lovely.  Choices, choices and more choices with no diffinitive answers.  That's how it goes pretty much the whole way along.  There really are no guarantees with any of it unfortunatley. 

Mine was 19mm breast tumour + a 25mm node one + 4 smaller ones hanging out in there. 

 I had the 4 x AC and 12 x weekly Taxol cocktail followed by 30 rads.  My nodes were positive so the benefit percentage was up around the 11%.  I ummed and aahhed about chemo and like everybody else it scared the hell out of me.

While it's no walk in the park it's generally not quite as horrific as what our brains like to imagine at the beginning. Surgeons really should not be giving advice regarding anything other than surgery.  Now you are shocked and no one needs that.

You do just have to go with your instincts and being able to trust them is no mean feat either, there is always doubt.

Perpetual confusion abounds as to whether or not you are doing "the right thing". It really is will you blame yourself if you don't and it returns or would you be content with your decision knowing you made the right choice for you at the time.

All the best with your decision sweet.  Whichever way you decide please know that you'll always find a great deal of support, plenty of shoulders to cry on and some laughs along the way on here.

xoxoxoxox

Hi @Frances54 . I had a similar diagnosis to yours - but different because we are all individuals! I had a grade 3 invasive carcinoma.  After lumpectomy, clear margins, no nodes, ER+.  The medical oncologists were humming and ha-ing about chemo.  A young enthusiastic resident desperately wanted me to have chemo.  The older senior onc shrugged his shoulders and basically went "meh" might help, might not.  I hurtled off to a private medical oncologist of my own choosing for a second opinion.  I considered the genetic testing but there was no guarantee that $4000 later, I would get a definitive answer.  I could have still landed in the grey area.

After taking all my own personal issues and medical conditions into account, I decided not to have chemo and just had radiation.  Not that radiation was a walk in the park!!  However, as the oncologist said, whatever decision I make, I have to live with it and not go down the "if only" path if I get a recurrence.  And I'm happy with that.  I've made my decision, and whatever happens, I'll deal with it at that point.  I won't regret not having chemo.  But that's just me and my personal circumstance.

Do what works for you after taking in as much information as you can.  I think if you make an informed, considered choice based on all the facts, then you are probably in a much better headspace to deal with it rather than feeling like you're just being carried along on a wave out of your control.  Best wishes for whatever you decide!!!

@Frances54 I had the prosigna test and it was decisive in having chemo - I was borderline but given tumour size (no node) I had the test. My oncologist preferred it as it sorts tumours into luminal A and luminal B categories and Luminal B patients benefit from chemo. Prosigna calculates your risk based on the tumour of metatising - there is information about the test available on the website with the material the oncologist will give you. I am glad I had the chemo as I never wanted to think what if.

Hi @Frances54, that’s really interesting. I had grade 3 tumours and lymph node involvement and no one even suggested chemo. Maybe because I did chemo previously? Now I’m beginning to wonder . . . 

If only they all got on the same page. Its cost me a lot of heartache trying to make the decision. I keep rethinking my position. I start chemo Thursday anyway. Ive never had it before so feeling anxious this week. The genome test came back high risk for recurrence so Im trying to tell myself I have no choice and have to do everything I can. What treatment did you have?