Chemo before surgery OR surgery before chemo???

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RR
RR Member Posts: 67
edited May 2018 in Newly diagnosed
Good morning,

I received my results yesterday and the surgeon suggested a 4 month cycle of chemo (apparently my body can take it??) before a full mastectomy. Is this normal? Or do most have surgery before the chemo? I am very scared about the chemo - probably the unknown and being so sick for so long. I have two little girls who need their Mumma ....

Any advice would be greatly welcomed xx
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  • kmakm
    kmakm Member Posts: 7,974
    edited May 2018
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    Hey brave mumma, have you been told what your chemo is called? While they all have things in common, they do vary (as do our physical responses), and it can sometimes be helpful to have chemo specific advice here. There is no 'normal', we're all different depending on our diagnoses.

    I had TC chemotherapy, which was four doses given at three weekly intervals. I am currently in hospital recovering from a bilateral mastectomy and reconstruction. Are you thinking about immediate reconstruction? You haven't mentioned radiation so I'm presuming you're not having it.

    Anyway, I won't tell I found chemo to be pleasant, because it's not, but nor was it the end of the world. I have four kids. You will need as much help as you can lay your hands on so if people offer, accept! I was petrified before it started (had a full blown panic attack two nights before) but most side effects are manageable these days. Never hesitate to ask for stronger meds!

    My order of treatment was dictated by my diagnosis variables, as yours will be I'm sure. Do you like and trust your medical team? Be guided by them, and your gut.

    If pressed, and you do have a choice, I'd say chemo first then mastectomy. Chemo is a hard slog, but it is transitory. A mastectomy is forever. I would not like to be lying here processing the loss of my breasts whilst also contemplating starting chemotherapy.

    All the very best. You can do this, you'll get through, keep your eyes on the prize. Big (though very gentle right now!) bear hug. K xox
  • RR
    RR Member Posts: 67
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    @kmakm - Oh, dear! I hope you are feeling ok? I haven't met with my oncologist yet, so will know more when I have that. They are suggesting chemo and then surgery, but I was just wondering if this is the norm.
  • AllyJay
    AllyJay Member Posts: 948
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    Hi there @RR . I was diagnosed with Grade 3 Stage 3 triple positive breast cancer with multifocal tumours and node involvement on the left side. I did six months of chemo, 12 weeks of AC chemo followed by 12 weeks of paclitaxol and herceptin. The herceptin continued afterwards for a total of 11 months. Four weeks after the taxol finished I had a bilateral mastectomy with full node clearance on the left and sentinal node on the right. Your team will know which is better, before or after surgery. In my case, it was explained to me that shrinking the two tumours and zapping any that most certainly had escaped into my blood or lymph system by that time was crucial. I too was keen for them to get out the weedwhacker and chop them off as soon as possible, but was told that the cancer in my breasts would not kill me, it would be seeds they sent off to other parts of my body that would. From my experience, having the chemo first and then the surgery after was the best for me. The pathology reports from the removed breasts showed NO sign of cancer, only the empty beds where it had been. The involved lymph node was essentially an empty husk of dead tissue. The cancer had taken over the entire node, but was now stone dead. I went into chemo with a strong (well relatively strong, I have other medical issues) body and the surgery afterwards was surprisingly easy to bounce back from. I was 58 at the start of this  crapfest, and will be 60 next month. Yes your two little girls need their mother...they can have you at half speed for a short while, so that you will be there at their weddings and there to cradle their bubbies when they arrive in years to come. You've got this, and your sisters (and a few brothers) in arms are here to support and cheer you on too. Sending the biggest (((hug))). AllyJay.
  • kmakm
    kmakm Member Posts: 7,974
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    RR, it's a rollercoaster as I'm sure you're discovering! I've had a bad couple of days and am hoping today will be better.

    At this very minute my biggest issue is the thumping headache I've woken up with! On the plus side I am actually hungry for the first time since my operation eight days ago. I'm told that's a good sign.

    I have anxiety issues and the best advice for me during breast cancer is to break things right down to day by day, sometimes hour by hour. To try not to cross bridges until you come to them.

    Right now I just want my breakfast!!
  • RR
    RR Member Posts: 67
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    @AllyJay - you made me tear up, thank you xx I am 45 and it is just awful - you sound like you really have had a long run of treatment, I truly feel for you. Take care and keep sharing your positive approach :smile:
  • RR
    RR Member Posts: 67
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    @kmakm - enjoy your breakfast, the food will make you stronger!!!
  • onemargie
    onemargie Member Posts: 1,264
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    @kmakm and @AllyJay have it in a nutshell well done ladies. I had my left mastectomy as I had triple negative stage 2 grade 3 bc aged 43 May 2016 then I had 8 rounds of chemo 2 weeks apart. 4 AC chemo and 4 paclitaxol. Then I took the right boob off as a prophylaxis. Wish I’d had the immediate recon and would of had I’d known the wait times would be several years in qld. But st the time it was the last thing on my mind. If I’d had chemo first I would of had time to research my options more too. Chemo can be shitty love but it is doable. Listen to the chickys above when it comes to support. You will soon find out who your real friends are. Margie xx
  • Sister
    Sister Member Posts: 4,960
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    I'm not sure how they calculate it @RR.  I suspect it's known size, advancement, type, aggressiveness and whatever else is in the mix.  I had surgery first - mine was ILC - first thought to be Stage 2 and about 2.5mm, then found to be in the nodes, so Stage 3, Grade 2 and 4.5mm but not aggressive.  So back into surgery for mastectomy and clearance.  Just long enough for surgery to heal and I started chemo - 4 x 3 weekly doses of AC and then on to 12 x weekly doses of Placlitaxel, which I started on Thursday.  Then it'll be rads, then hormones.  While the surgeon is convinced he got all of the cancer, he said there's no point taking chances that anything has escaped and is floating around.  I am 54 and have 3 kids, the youngest of whom is 12.  I'm different from @kmakm - I found the surgery, while confronting, easy to get over.  Chemo takes a special type of fortitude!
    Anyway, ask your medical team exactly what is being suggested and why.
  • Eastmum
    Eastmum Member Posts: 495
    edited May 2018
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    Hi @RR
    I was diagnosed in January with invasive lobular carcinoma like @Sister but in both breasts. I was recommended bilateral mastectomy first then treatment depending on my pathology. I’m 52 and have four kids. The older three are adults and the youngest is 12. 
    I asked to have my surgery delayed until April because waiting until the school holidays would have less impact for me in terms of family and work. Of course I told my surgeon that if it was a matter of life and death, I’d jump up onto the slab immediately but if I did have the choice, it would work out better for me to wait. So I had a range of staging scans and after it was determined that there was no evidence of metastasis, he was happy to wait. 
    We did discuss neoadjuvant (pre-surgery) therapy but he said he wasn’t in favour of it as we didn’t have any node information and only had the biopsy path results which are never as comprehensive as the path from surgery. 
    I had my double (nipple sacrificing, skin sparing) mastectomy with air expanders inserted, exactly four weeks today! I was back at work and driving, two weeks ago. 
    I had sentinel nodes removed on both sides - there was no cancer found in the right sentinel nodes but 2/4 sentinel nodes on the left were positive so I had a full node clearance on the left and the final path showed cancer in 2/9 axillary nodes. 
    The craziest thing about my final results is that while everyone expected there to be a large section of cancer on my left side (that side had quite a bit of distortion and an inverted nipple), and there was - 105mm - my right breast, which looked normal, had NO malignancy detected at MRI and showed no node involvement, had 165mm of cancer cells in it! Frigging enormous!
    Both sides came back ER+ PR+ and HER2- and grade 2, stage 3 in the left, stage 2 in the right. 
    Lobular carcinoma is just too unpredictable and these final results will now determine the treatment they recommend for me. 
    Like @sister also, I’ve found the mastectomy relatively easy to cope with (my distorted breast looked so weird I was actually happy to see it go!) but chemo absolutely terrifies me! 
    I know I’ll have to go down that path though and that will be followed by radiation and hormone therapy - and I know I will get through it! 
    My first appointment with the oncologist is on Tuesday. 
    Wishing you all the very best with your journey. Please keep us updated xxx :smile:
  • Sister
    Sister Member Posts: 4,960
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    I'm fairly small breasted and a 45mm tumour is massive for me but I never noticed anything - it was picked up in a screening scan.  ILC is a bitch.  @eastmum Chemo is crap but you'll get through it.
  • kmakm
    kmakm Member Posts: 7,974
    edited May 2018
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    So there you go RR... clear as mud!

    As with most things in life, we're all different. Vive la différence I say, it'd be boring if we were the same!

    One foot in front of the other, the fog will clear soon  :)
  • lgray3911
    lgray3911 Member Posts: 207
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    I was given the choice by my oncologist. My cancer was early breast cancer ER+ PR- and Her2+ Grade 2/3 so even though mine was found early it was aggressive. It had also gotten into my nodes 11 nodes taken and 5 with microscopic traces so I opted for surgery 1st then chemo. I also opted for double mastectomy. My logic was that I was better going into surgery when I was fit and “healthy” rather than after 6mths of chemo because I didn’t know how my body was going to react to chemo so better to have surgery when I was still fit and well. I was 37 with a 4 1/2 yr old and 1 1/2 yr old. I was lucky and got through chemo with very few side effects so turns out surgery would have been fine in either order. The recover from surgery was really fast and easy for me too but I didn’t have immediate recon because I wanted to get through chemo so that would change things. Good luck. Ask lots of questions when you see you’re oncologist and remember that if they will recommend the order of treatment that they believe is best for you so I would take their advice. If they give you the option sit down like I did and write a list of pros and cons for both options. Good luck and remember it may be a rough few months but it’s only a moment in time and you will get through it xxx
  • Finch
    Finch Member Posts: 302
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    @RR what I've learnt since being diagnosed with breast cancer is that there are so many types of breast cancer.  Everyones is different and treatment varies for each.  I've also learnt our surgeons, medical oncologists, radiation oncologists are all specialists in their field are pretty good at getting it right.  So much research has gone into breast cancer .  I too had a complete panic about having chemo (as I did about my surgery) . The chemo panic was severe enough to make me jump onto this forum (rather than just lurk) to ask advice ...... and to call my breast nurse in a complete tizz.  She quickly made an appointment to see me and reassured me.  I advise you to give your breast nurse a call.  She also is a specialist in her field ..... easier to talk to has an overall understanding of what you're going through rather than just treat you, and will explain the reasons your team prefer you to have chemo before surgery in an easier to understand terminology. 
    ps: I'm half way through chemo , for me it is doable.  Take all the help you're offered. Get everything done during your good week if you can.  Chemo is cyclical and hopefully like me you get a good week before they hit you with it again.  It's amazing what you can achieve in that good week.  I don't have young children which I realise makes it considerably easier for me . Today I went on a pre-chemo lunch date and polished off 3/4 bottle of sparkling and had a gorgeous tasty meal.  I can't even look at wine in the first two weeks, or tea or coffee. My food tastes like cardboard .... it makes this third week even more special and I get everything done in my good week, cooking and freezing . 
    All the best and take care xxxxx
  • Eastmum
    Eastmum Member Posts: 495
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    Thanks @Sister - so much amazing support here :smile: 

  • RR
    RR Member Posts: 67
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    Thank you for your support - it is a difficult road to travel xx