Inflammatory breast cancer - anyone not had or had a masectomy, any alternative treatments other than chemo, immunotherapy, surgery?

Hi all, 

I was wondering if anyone was aware of any other treatments that are available for inflammatory breast cancer, it appears that the only options are chemo, radiotherapy, targeted treatment and surgery.  I would like to know what else is out there and where I can access it and how?  I get it that this type of cancer is rare and non invasive treatments do not appear to have been developed but surely there must be something else out there?  Additionally, is there anyone that is finding any alternative or complementary treatments useful?

I want to avoid surgery if I can at all costs or if I must have it prepare myself for it.  I would like to know if there is anyone out there that has inflammatory breast cancer stage 3 and opted not to have a masectomy, what did you have instead, what was the impact of the decision/prognosis? Or if anyone knows if someone didn't and how long they lived for after,

I would also like to hear experiences from people that had a masectomy for IBC, how did they cope, what does it look like, what reconstruction did they opt for, what were the reconstruction results, complications.issues etc.

Any info would be really useful.

Thanks, 

Rose 

  • Hi Rose,

    A very warm welcome to our forum. I am sorry to hear that you have had a diagnosis of inflammatory breast cancer and understand your concerns re treatment. Inflammatory breast cancer is one of the more aggressive types  and stage 3 is quite advanced. Chemo, radiotherapy, targeted treatment and surgery are the most common treatments for this type of condition. Many alternative/complementary therapies reduce the efficiency of the normal cancer drugs, so it is worth discussing this with your consultant. The first line of treatment in most cases is surgery. This removes the tumour and and lymph nodes that are involved. The additional treatments work to rid your body of any minute amount of tissue, that may be left behind, or anything new that is trying to grow. In some cases, it is not possible to remove the entire tumour.

    Have you discussed any additional treatments with your consultant? If there is anything else that is more effective than conventional treatment, your consultant should be aware of it. You will find it helpful to write down any questions you may have and take this to your next consultation. Do you have a homoeopathic hospital near you? You might find it helpful to talk to a consultant there about any other effective therapies.

    I had Pure Mucinous Cancer, Stage 1, a rare and less aggressive cancer. I had a lumpectomy initially, but didn't have  radiotherapy. I took Tamoxifen for 1 year, accompanied by Starflower oil. Within 6 months, I discovered a lump in my other breast. My surgeon was pretty sure that this was cancerous. Fortunately, biopsy found it to be benign, but pre-cancerous. Just under a year after my lumpectomy, I found another lump in my original breast and had a double mastectomy, followed by Letrozole for 6½ years. That was all 15 years ago and I still have a good quality of life. I found the mastectomies easier to cope with, than the lumpectomy. If you have any questions about mastectomies, I am happy to answer them.

    My breast looked a mess, following the lumpectomy. I changed surgeon for the second operation. My new surgeon made the best job he could, of what was already a bad job. The breast that only had the mastectomy, looks much better. Unfortunately, I was not a suitable candidate for reconstruction, due to previous, non-cancer related surgery, but I manage well with a selection of prostheses for different activities.

    This is all about prolonging your life for as long as possible, please place your trust in your care team and work out the best option between you both. Whatever decision you make, I hope that it will be the right one for you. 

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx