Forum Discussion

Leanne1509's avatar
11 years ago

Alternatives?

My name is Leanne, I'm 41 and was diagnosed with breast cancer last week. My tumor is 4.3cm and has not spread anywhere at all. I am scheduled to have a mastectomy in a few days. My question is about chemo. Even though the cancer has not spread at all my Doctor says I need the full course of chemo (5 months) and then radiation. Has anyone else chosen not to have the chemo? The unknown of putting such toxic chemicals into my body frightens me and the long term effects of it all. Just wondering if anyone else has any thoughts on this.

8 Replies

  • Hi Leanne

    Jessica's comments echo mine.  I was initially diagnosed at age 35 with extensive DCIS (9cm) but only had a mastectomy and no radiation or chemo.  At age 42 I was diagnosed again, this time with invasive ductal carcinoma.  I had to have another mastectomy and also chemo.  The chemo scared me as I don't like the thought of all of those toxic chemicals floating around in my body.....but the thought of the cancer coming back again scared me even more!!  Chemo is not fun but it is certainly do-able and well worth it if it stops you having to go through this horrible journey again!

    Listen to your doctors.  There are no guarantees but it should greatly help you to have no recurrences!!

    Louise

     

  • Hi Leanne

    Jessica's comments echo mine.  I was initially diagnosed at age 35 with extensive DCIS (9cm) but only had a mastectomy and no radiation or chemo.  At age 42 I was diagnosed again, this time with invasive ductal carcinoma.  I had to have another mastectomy and also chemo.  The chemo scared me as I don't like the thought of all of those toxic chemicals floating around in my body.....but the thought of the cancer coming back again scared me even more!!  Chemo is not fun but it is certainly do-able and well worth it if it stops you having to go through this horrible journey again!

    Listen to your doctors.  There are no guarantees but it should greatly help you to have no recurrences!!

    Louise

     

  • Hi Leanne

    Jessica's comments echo mine.  I was initially diagnosed at age 35 with extensive DCIS (9cm) but only had a mastectomy and no radiation or chemo.  At age 42 I was diagnosed again, this time with invasive ductal carcinoma.  I had to have another mastectomy and also chemo.  The chemo scared me as I don't like the thought of all of those toxic chemicals floating around in my body.....but the thought of the cancer coming back again scared me even more!!  Chemo is not fun but it is certainly do-able and well worth it if it stops you having to go through this horrible journey again!

    Listen to your doctors.  There are no guarantees but it should greatly help you to have no recurrences!!

    Louise

     

  • Hi there my diagnosis was infiltrating duct bc grade 2 , 20mm with one lymph node 0.8 mm. Er pos, pr positive and her2 neg. I had a lumpectomy and when above results were known the three oncologists who were part of the consulting multidisciplinary team at the private hospital all, based on the lymph node issue recommended chemotherapy. I reacted with huge amount of anxiety-- ended up on the floor-- and really chemotherapy just filled me with dread. My brilliant sugeon sent me to an oncologist a bit out of the way: who promptly said I don't recommend chemo for you: it would give u a 1-2percent increase of survival and carries real health and functioning risks. I had this thought ' I can do this'. And the dread left. He said, for me, the surgery was key. FollowiEd by targeted treatment ie hormonal- tamoxafen: bu then said radiation may have some value as well. I then said well everyone else seems to either have chemo or other oncologists etc: and his response was a lot of practice is out of date, risk adverse, automatic and also there is financial incentives as well. He liken chemotherapy in my case: to bombing in Vietnam. A bit hit and miss: I think ou R language around this can be really important as I've had women tell me there chemotherapy 'guaranteed' them 5 years etc. I can only speak from my experience: if chemotherapy increased my level of survival odds to 50 percent then I would have worked with my fear to have it. When I thought I had to have chemotherapy I checked in with my work for possible 4 months off lwop and was told I wouldn't be eligible. So for me : after a year my life is pretty much the same except my business on the side took a hit as I thought I've got to cut back on something but that's coming back as well so all good. When I had radiation at peter Mac I was reassured that my treatment was standard : my follow up is every 3-5 months with oncologist who I've seen three times now: and he brought up research about 'best practice' follow up is yearly mammagrams/ultrasounds and the ironically low key physical examination. The changes I've made to lifestyle is based around less alcohol : from 5-7 glasses pw to 1-2 and more exercise. Fear does come up but its ok and I'm always surprised at this also being true for women who have had the lot: so chemotherapy doesn't seem to be agaurantee of General wellbeing and confidence. I do want to live a long life: and be here for my kids but I also mostly have made peace with life's uncertainty and also the value of my life right now. Not my intention to argue against chemotherapy but just to speak from my experience!
  • Hi there my diagnosis was infiltrating duct bc grade 2 , 20mm with one lymph node 0.8 mm. Er pos, pr positive and her2 neg. I had a lumpectomy and when above results were known the three oncologists who were part of the consulting multidisciplinary team at the private hospital all, based on the lymph node issue recommended chemotherapy. I reacted with huge amount of anxiety-- ended up on the floor-- and really chemotherapy just filled me with dread. My brilliant sugeon sent me to an oncologist a bit out of the way: who promptly said I don't recommend chemo for you: it would give u a 1-2percent increase of survival and carries real health and functioning risks. I had this thought ' I can do this'. And the dread left. He said, for me, the surgery was key. FollowiEd by targeted treatment ie hormonal- tamoxafen: bu then said radiation may have some value as well. I then said well everyone else seems to either have chemo or other oncologists etc: and his response was a lot of practice is out of date, risk adverse, automatic and also there is financial incentives as well. He liken chemotherapy in my case: to bombing in Vietnam. A bit hit and miss: I think ou R language around this can be really important as I've had women tell me there chemotherapy 'guaranteed' them 5 years etc. I can only speak from my experience: if chemotherapy increased my level of survival odds to 50 percent then I would have worked with my fear to have it. When I thought I had to have chemotherapy I checked in with my work for possible 4 months off lwop and was told I wouldn't be eligible. So for me : after a year my life is pretty much the same except my business on the side took a hit as I thought I've got to cut back on something but that's coming back as well so all good. When I had radiation at peter Mac I was reassured that my treatment was standard : my follow up is every 3-5 months with oncologist who I've seen three times now: and he brought up research about 'best practice' follow up is yearly mammagrams/ultrasounds and the ironically low key physical examination. The changes I've made to lifestyle is based around less alcohol : from 5-7 glasses pw to 1-2 and more exercise. Fear does come up but its ok and I'm always surprised at this also being true for women who have had the lot: so chemotherapy doesn't seem to be agaurantee of General wellbeing and confidence. I do want to live a long life: and be here for my kids but I also mostly have made peace with life's uncertainty and also the value of my life right now. Not my intention to argue against chemotherapy but just to speak from my experience!
  • Please have the chemo. It will a greatly reduce your chances of getting a secondary cancer. Jessica has explained it all very well.yes chemo is unpleasant but you get through it and then you can get on and live your life. It is not nearly as unpleasant as an incurable lung/liver tumor. Good luck.
  • Hi Leanne,welcome to the online blog:) Jessica's answer is spot on! Your tumour is quite large,and this could be the reason they are suggesting chemo.However,after surgery,and when they have the FULL results from the pathology,they will give you a much clearer answer on why you need chemo.I had chemo 12 months ago now,and it was not nearly as bad as I feared.I feel it is very important to listen to your oncologist.They have the experience,and they see so much breast cancer nowadays,and it is really not something to take lightly.Stay on this blog,as the support you get on here and the advice from the other ladies,is just the best,and it's always so helpful and right! Take care.xoxRobyn
  • Hi Leanne,

    Firstly, while chemotherapy is a pretty unpleasant process, with support and medication to manage the worst side effects, it is not nearly as bad as it used to be. I can tell you from personal experience that most side effects fade away and that if it greatly increases your chances of surviving a lot longer or indeed being cured of  cancer, it seems to me to have been a really worthwhile thing to put myself through. 

    Secondly, there are tests you can have done after surgery, once they know if your cancer is oestrogen-receptive, that can say whether you personally would be better having chemo or not, and some of them even test this out with your own cancer cells and the proposed treatment to see how well your cancer will respond to the treatment.

    Did your doctor explain why he/she recommends chemo and/or radiation treatment after your surgery? Chemo is to mop up the cancer cells in theblood or lymphe that all of us with cancer can have anywhere around our bodies , and the radiotherapy is to mop up the cancer cells that can get left behind in the immediate vicinity of the original cancer site. Your cancer size is relatively large, so that would make it more likely to have spread even if not big enough to show up on scans. You need your doctor to tell you what are the risks  of distant or local recurrence within 5 years if you do have Chemo/radiotherapy, and what are the risks if you don't. Then you can see whether it is worth it or not. For me, without it I had a 45% chance ( 1 in 2 ) of recurrence. With it, I have about an 8% chance(1 in 12). To me this is well worth while. If it only made about a 2% difference, I might not have bothered. 

    Unfortunately most types of breast cancers can metastasize, ie spread through the blood or lymph into other sorts of tissue using stemcell-like cancer cells. They find a suitable spot to grow, often in the liver, lungs, bone brain etc, and then start to form a new tumour or tumors. This can be immediately or it can be years and years later. This can happen even if your lymph nodes have no cancer in them. Chemotherapy goes all over your body and "mops up" these metastatic "seed" cells or small tumors, to help remove all remaining breast cancer cells wherever they are in your body. 

    Also, the tests we have done on us before surgery, ie bone test and body scan, only pick up metastatic cancers over 1cm in size. So there can be smaller cancers that have started even if the scans come back clear. Again, the chemotherapy mops these up.

    Unless you had a big biopsy taken, much of the important information about your breast cancer tumor will not be available until a week or two after the tumor is out and the pathologists have checked out your sentinel lymph node and the tumor itself in very close microscopic detail. Then they will be able to say whether you will need to have targetted therapy for HER2+ type cancer, or Tamaxifen or Aromase Inhibitors for hormonally-receptive cancer. Then they should be able to tell you the risk with or without the treatments they recommend, and what there is about your cancer that makes these particular treatments right for you. 

    Best wishes for your surgery, and I do hope you can get the full details from the surgeon about why you need these treatments, and are able to make the choice that really will best help you live a good quality longer life.