Did you have surgery w/o doing chemo?

waterdreamer · 06-08-2017, 10:38 AM

Hi Vicki,

I did a double mastectomy, and then tried to use natural therapies and diet instead of chemo. I have been in a constant battle since being diagnosed Stage IV. If I was to do it over, I would do chemo first to shrink or eliminate the tumor. I have implants and I hate them, they are hard cold objects that lie on top of my ribs. I would remove them, but I am fighting metastatic disease right now.

Vickilapp · 06-10-2017, 09:20 AM

Dear Waterdreamer,
In reading your profile and your post, my heart goes out to you for all that you have gone through. I can see from your picture with your beautiful children that you have a precious reason to live.

Thank you for sharing your experience, feelings about your implants, and your regrets about not doing chemo earlier. It is very helpful for me to hear this as I evaluate my decisions. I may not have the statistics to help me make decisions, but hearing other people's stories helps me a lot.

When I got the recurrence, I felt regret about not doing radiation, not giving myself regular self-examinations even while I was on treatment, and falling off the wagon with regard to my good diet. When I shared these regrets with a friend, she refused to let me wallow in my regret, telling me that she believed that I made the decisions that were right for me, and don't beat myself up with these self-criticisms. That felt affirming for me.

As I have gotten additional feedback about the factors that may have allowed the recurrence, I wish that I had gotten 2nd opinions about next steps when the I didn't have clear margins from the 1st surgery. My oncologist recommended going on Kadcyla (TDM-1) to clear up the remaining cancer, and that seemed like a good way to go. Since the recurrence, I have had people tell me that I should have gotten another surgery to deal with the margins after the 1st surgery, rather than go on Kadcyla.

I hope you can forgive yourself for your choices, I know that you did the best you could that resonated with your values and beliefs. It is not easy making decisions about how to deal with these things. It has helped me to affirm that in spite of appearances, something wonderful is going to come out of this situation.

At this point for me, all the options that I feel like I am faced with involve some kind of loss that I don't want to have. Mastectomy: loss of my breast & my physical beauty. Reconstruction: loss of naturalness, with having something artificial in my body, plus setting myself up for future surgery. Chemotherapy: loss of my good health, and nerve damage. Natural remedies: risk of spreading rather than retreating of the disease. I want to keep bringing my spirituality into the picture to guide my choices. It helps a lot to hear other people's experiences. Thank you for sharing yours.

Vicki

Spring · 06-11-2017, 07:39 AM

In 2012, I was diagnosed with dcis with possible microinvasive through ultrasound guided biopsy, her2 status was unknown, but it was very extensive. I saw three surgeons, two of them said that I just need mastectomy, my third opinion surgeon felt 75% chance that I had some invasive cancer somewhere through examination and I should do chemo first. I was very scared with chemo and I chose the easier option of just having surgery. Four and half years later, cancer came back in my axilla lymph nodes and lungs. Of course, I am regretful of not going with aggressive treatments at my first diagnosis.

DianaMK · 06-11-2017, 11:50 AM

My experience is that at stage 1, I had chemo (A/C) and radiation and it still came back and spread to my lung and skin. I went to the Cleveland Clinic and they recommended chemo (TCH) before mastectomy. Less than 2% cancer cells remaining when they did the mastectomy. Granted the chemo is tough but here I am 7 years later at stage 4 and so thankful even though I had to give up my breast. Sorry you are going thru this. Wishing you the best.

vickyjohn · 06-13-2017, 03:38 AM

Hi Vikki. My wife is Vicky also. She had 3 tumours in multifocal pattern in 09 aged 49 and went for chemo first then mastectomy. Taxotere + FEC +H ..Pretty hard but hair all back within a year or so . A couple of recurrences since and now on maintainance Kadcyla with NED at last scan and very healthy and well. The main thing is to keep the tumour burden as low as possible and that means surgery and chemo in my opinion. If you get it under control even if it recurs its is much more manageable and if it's oligometastatic even cureable. Wish you well.