Do I choose surgery or chemo first?

JoB
JoB Member Posts: 8
I posted my first discussion last week and now I have a bit more information I thought I would give you an update.
I have Hormone Receptor (HR) Oestrogen (ER+PR+)HER2.  I was booked in for a lumpectomy next week but now my surgeon wants me to see an oncologist on Friday to discuss having chemo before surgery.  I was all set for the surgery and had got my head around it and now I am faced with having to make another decision and aren't sure what to do for the best.(If only I had a crystal ball)

I am fit and healthy at the moment and I think this is the best time for me to have surgery and then tackle the chemo after.  If I have chemo first and it knocks me for 6 I think the recovery for surgery will take me a lot longer.  I was under the impression that chemo was only done for mastectomy cases, and a mastectomy has never been mentioned for me, but I am no expert.

I received my journey kit and I have been reading through that and also gone through the pros and cons of Neoadjuvant chemo.   This cancer is inside me and I want it out, sooner rather than later!!
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Comments

  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    @JoB  it is quite common now for them to do chemo prior to surgery as it shrinks the tumours etc and makes it easier for them to get clear margins.... 
    it is a lot to get your head around.

    Do you have someone to take with you this new appointment? 
    Have you got a Breast Care Nurse yet ? 

    She is often a good source of being able to bat the pros and cons with so that you know, that you understand why they are suggesting something. 
    I am sure some of the others who have a similar pathology at this stage to you will give you some more information and help you understand the process more. 

    Oh it only we all could have a crystal ball where we could see the different outcomes to the different choices and make decisions based on what we see. ..... ah but alas we don't have that .........
    Your surgeon is sending you to see the oncologist  (they often have a great connection and work as a team as this Bitch needs a group effort to get it kicked off the field) Listen to the oncologist allow him/her to tell you why they propose this to be the better option going forward ask the questions what if  " I want to do surgery first what does that do for my chance of recurrence? 

    I am sure you will get lots of helpful hints from ladies here who have already had to make that type of decision. 

    Hugs 
    SoldierCrab
     
  • kezmusc
    kezmusc Member Posts: 1,544
    HI 

    Doing treatment this way around is becoming more popular it seems.  As @SoldierCrab says, it is  to shrink/destroy the cancer cells first therefore giving more women the option of lumpectomy versus mastectomy.  It allows a choice for some depending on the size and status of the tumor to have a less radical surgery.  From what I have read it they are finding it very effective with triple negative cancers as well.    Going in to surgery with an already better pathological status can lessen the chance of recurrence is what  the research is saying. 

    It's definitely a question for your oncologist
     Your breast care nurse will probably be able to answer a lot of questions as well. 
    I did it surgery first (lumpectomy/lymph node clearance) as we already knew there was lymph node involvement so chemo was to catch any wayward little buggers that may have been missed. 
    Ask lots of questions and if your breast care nurse is available see if she can come to the appointment with you.  
    There are so many decisions to be made along the way but ultimately it is your body and your choice.

    XXOX
  • PatsyN
    PatsyN Member Posts: 296
    I had chemo before surgery. It wasn't an option for me as I was considered 'inoperable' due to the size of the tumors vs the size of my breast - 2 huge tumors in a AA cup.
    I wouldn't have wanted all that chemo with my right breast missing. Somehow it made chemo more bearable because I was still 'intact'.
    But I honestly don't know how all the doctors make their decisions. I just do as I am told. After 5 months of chemo and a mastectomy before xmas I'll be going back for another operation, which they call an axillary node dissection. It's not that uncommon but I was mortified at the time. I thought that came with the mastectomy!
    Chemo is what everyone wants to avoid and with good reason but if they say you need it then you must. Best to get that one out of the way first up, but the order in which they do everything varies greatly from one woman to another.
    I've never been given any options, just ultimatons.
    Good luck with this long and winding road, it will take you to places you've never been before...
    Patsy

  • AllyJay
    AllyJay Member Posts: 942
    As the others have said, each person is different and this decision needs to be made as an informed, emphasis on the informed, choice. When I was diagnosed and told that the recommended treatment plan was chemo first, then surgery, I too was freaked out. To be quite frank, being a public patient, I thought that this was just a way of keeping me busy with some treatment in the meantime, as their surgery lists were full, but that they weren't going to admit that to me. All the publicity about surgery waiting times in the public sector put that at the forefront of my mind. I felt so threatened by this cancerous monster that had invaded my body, that it was going to be left inside me while they did the chemo, I wanted to just  be given a steak knife  and I'd cut it off myself!! Then it was explained to me that in some cases. and mine in particular, the chemo first was the very best option. I was then told that the cancer in my breast would not kill me, but any cells which might have set off from it most certainly could. It was further explained that any cell, cancerous or otherwise, needs a blood supply to survive. If that cell does not have a blood supply, it would die. I had a lump, not just one or two cells, not just a dozen, but a shitload of them, all with their cosy little blood supply. That blood supply was connected to all my other blood vessels, like roads in a city. At any point the cancer cells could penetrate to within that blood highway and go and set up shop elsewhere, and that was a problem. As it happened, after the six months of chemo, I had the surgery and the pathology report said no discernable signs of cancer, all that was left was the dead tumour bed which was where the cancer had been.  Have a good talk to your team, hear what they have to say, then make your decision. Sending a hug...
  • primek
    primek Member Posts: 5,392
    It won't hurt to see the oncologist and discuss the pros and cons of order of treatment. Was your path Her2 positive?  The cancer size, position and pathology are all considered. The studies I have read show no difference between either way except on surgical removal improvement if a large tumour. The oncologist will explain why better before or after or no difference. They are currently ding clinical trials on her2+ have chemo first for early stage breast cancer so maybe tbey want to offer this to you. 
  • Clouise
    Clouise Member Posts: 25
    I was diagnosed last November and it was recommended that I have chemo first then surgery.  I spent the time leading up to my oncology appointment freaking out because like you I wanted it out.  After talking with them about the pros and cons it felt like the right thing to do, my cancer is triple negative so I would have had chemo regardless so I guess that helped my decision.  I’ve now had 3 rounds of chemo and my tumour has halved in size so I know that chemo is kicking it’s butt.  This is my first post but I spent weeks reading the different threads on chemo side effects on this forum and everybody is different, for me the worst impact has been the change in taste and tiredness but I’ve had very little nausea and have been able to work through.  What ever you decide, good luck x
  • Fiona2
    Fiona2 Member Posts: 69
    Dear Job, Don't be afraid of the prospect of chemo prior to the surgery.  I had Er+ Her2 3+ tumour with lymph node involvement and so Chemo was recommended first as a treatment for any possible early spread beyond the nodes (and before the body is stressed by surgery or radiation). I was comfortable with this because, unlike you, it was the prospect of surgery that freaked me out. I was able to monitor the dramatic reduction and disappearance of my original lump throughout the chemo and herceptin such that it was obvious that the treatments were working and preventing further spread. Like AllyJay described, the eventually surgery and pathology testing, which really just became biopsies, failed to find any evidence of ongoing  disease. This seemed miraculous but apparently is not that uncommon. I was very happy to be able to avoid major surgery and made a very smooth recovery.  Very grateful for this.  Sounds to me very important that you have a conversation with your oncologist to discuss your options.
  • JoeyLiz
    JoeyLiz Member Posts: 339
    Hi, I have T2bN1 grade 3 Her2+ 3 tumours spanning 7cm.
    it was recommended Chemo first as clinical trials have shown great response of Herceptin and at that size it would mean a mastectomy. 
    I have had 4 rounds of AC and the ultrasound showed a reduction of more than 50%, my Dr was very pleased and she said that was without the hard hitting stuff! They are hoping for a complete response which will mean a breast conserving surgery plus radiation. 
    My family was very concerned as to why they were leaving it and not just cutting it out, but I was very confident in my Drs decisions.
  • LMK74
    LMK74 Member Posts: 795
    I had a grade 3 stage 2 6cm lump in my right breast. I'm  only a small B cup so mastectomy was the only choice for me straight  up. I was offered the choice to do chemo first in the hope i might get away with  just a lumpectomy. After doing six months of poisonous shit chemo failed to have any impact on me whatsoever. When i had my mastectomy my tumor was 9 cm and had grown 3cm in six months. We are all different and respond differently to treatments. The plus side of doing it first is now knowing if i have a recurrence a different chemo would need to be used as the gold standard AC and Paclitaxil won't work and have been told that by my team. I'm very glad now i did it first as otherwise there would be no way to tell for sure if chemo worked. All the best in making your decision. 
  • Sunshine0206
    Sunshine0206 Member Posts: 146
    I had triple positive BC with multifocal tumour.  We knew at least one node was positive. 

    There was discussion regarding chemo first however after the team meeting with several oncologists, surgeons etc present the recommendation was mastectomy. I elected bilateral. 

    Nodes were 2 positive and 9 removed. 

    I’m coming to the end of paclotaxol.

    Most people are happy with their choices because it’s what was recommended at the time and it can’t be changed now. I’m the same. 

    From what I have read there are no differences in DFS only breast conservation.  Best wishes to you with a decision that is not easy.
    x
  • Jual
    Jual Member Posts: 21
    Hi @JoB,
     
    LIke many of the other women here, I too had chemo first and am about to have my last one before surgery in a month. My tumour was HER2+ but negative for progesterone and oestrogen.  I too was booked for surgery first but once the pathology came in, the recommendation was to do chemo first to see how the tumour and node responded and to see if they shrunk to reduce the size of the operation. I am pleased to report that clinically they have quite significantly and this is the advantage of the chemo first as you see if it and the Herceptin affects the tumour and hence you can assume it will also attack any circulating tumour cells - the ones that do cause the problems with the potential to turn into metastasis. My surgeon did say he would remove the tumour and node first if I really felt I couldn't cope with knowing they were there but I decided I was ok with this.  If you really don't feel you can cope psychologically with the tumour being there then that it is perfectly reasonable to go with the surgery first. All the best. 
  • Imo
    Imo Member Posts: 25
    Hi @JoB

    I am currently undertaking neoadjuvant chemo and, like a couple of women who have posted here, I've been lucky enough to see dramatic results.  Within 3 or 4 weeks of weekly chemo I could no longer feel the tumour.  I'm yet to have any imaging to see what's really going on in there but such a response to the chemo has been reassuring for me (especially as I'm triple negative).  I was also preparing myself for the idea that my tumour might not respond to the chemo protocol I'm on.  I would still consider neoadjuvant a good decision as the only way to know that the chemo isn't having any effect and that changes need to be made is if there is a tumour there to test it on.

    It's completely understandable that you'd want the cancer out as soon as possible.  I was very nervous to have 2 grade 3 tumours kicking around in my breast while treatment started, actually, it still bothers me but it's just one of many things about BC that bother me!  It's also frustrating that I don't have a confirmed stage as the lymph nodes won't be checked until surgery. Imaging shows they're fine but that's not the same as a microscope. 

    Ask your oncologist to explain why the chemotherapy is considered necessary for you.  Chemo is not just for mastectomy patients, it depends on the stage and the grade of cancer and most likely a bunch of other things as well. 

    Have you read "A guide for women who are considering
    breast cancer treatment with chemotherapy
    and/or hormonal therapy before surgery" on the breast cancer trials website?  Here's a link to copy:  https://www.breastcancertrials.org.au/file/44/Neoadjuvant-Patient-Decision-Aid.   If that doesn't work there's a link from the BCNA website page on neoadjuvant chemo. I found it really helpful when i was making my decision for chemo or surgery as my first treatment. 

    I hope your appointment with the oncologist tomorrow clarifies things for you and you walk our feeling more confident in whatever choice you make. 
  • Lmc1310
    Lmc1310 Member Posts: 120
    Another benefit of neoadjuvant chemo for her2 is the possibility of having both herceptin and perjeta. Can't do that for adjuvant chemo, although i have heard of one hospital offering if self-funded. Best wishes with your decision.
  • Marianne_BCNA
    Marianne_BCNA Member Posts: 245
    Hi @JoB, how did you go with your appointment with the oncologist and decision-making?
  • Spillsy
    Spillsy Member Posts: 96
    I am having chemo first and was trying to work out the treatment order a month ago. With mine it’s too big to take out the tumour, so  I would have had to have a mastectomy straight away. This way they said my tumour could shrink and reduce the surgery extent, plus chemo can kill all those stragglers..... I started chemo in December, can’t say I am enjoying it, but it’s just something I have to do. It also gives me time to think about surgery and recon etc, and get more information. I also get this time with both breast intact, even though Cancer is in one of them,