[Joanne S]

Hello all, I have not been on this site for weeks. A lot has been going on lately and I've been soo very overwhelmed.

It’s been very difficult adventure – Trying to figure out which path to take since my gyn/onc and my breast/onc are not in agreement with my prognosis or treatment. As most of you know, after spotting and having a D&C, I was diagnosed with BC mets to uterus last August-which is quite uncommon. In September, I had a pelvic by the gyn/onc but was told I was not a candidate for hysterectomy as the cancer is beyond the uterus and too close to the bladder. Radiation was recommened by the gyn/onc but I am very hesitant to go that route of treatment. In September, my bc/onc put me on Affinitor and Aromasin (hormonal therapy) and I immediately stopped taking Arimidex (after 4+ years).

Although my Janurary/February PET and MRI scans showed slight improvement, the gyn/onc pelvic in the first week of March actually revealed progression at the base of my uterus and now tumor is touching the bladder. That was shocking news. Needless to say, I’m still not a candidate for hysterectomy. Gyn/onc is unable to remove my uterus without damaging the bladder and possibly the rectum – so definitely no surgery. The gyn/onc again urged immediate radiation. At my insistence not to sugar coat his opinion, he feels that my prognosis is very poor – probably less than a year – but bases his opinion on his experience with gyn cancers, which is not exactly (ILC) breast cancer to uterus.

My bc/onc on the other hand does not feel my life expectancy is that short, and she says there are many available chemo options we can try. I am still hesitant to do the radiation as the gyn/onc says the radiation is very damaging to the pelvic walls, bladder and rectum and it is very painful. Additionally there is also a good possibility I may still lose my bladder and/or rectum. If that’s the case, why not skip the radiation and just do surgery to remove the bladder? Don’t really want to go that route, but will do whatever is necessary to save/extend my life.

I did have side effects, but did quite well after the first three chemos. Last week, my week off of chemo, I became quite ill. Neuropathy set in big time in my hands and feet. I’ve been extremely weak and fatigued. Just getting up to go to the bathroom has been a major effort. Easter Sunday my hair decided to come out in clumps. Finally, I started feeling a little better last Saturday, but my bladder felt a lil different. I had urgency to urinate often, but didn’t release very much urine. No pain, no bladder spasms, no blood in urine, and no other symptoms. Suddenly late Saturday evening, I began running a fever 101.9. I went to ER and was admitted to the hospital.

As I suspected it was a bladder infection so I’ve been on IV antibiotics for the past four days. Yesterday the gyn/onc came to the hospital and gave me a pelvic. There is very Slight improvement so he is suggesting I have more chemo: 3 treatments ( 1 x per week) of Carboplatin and Taxol, then a one week break and then a pelvic exam to see if there are any changes. I honestly don’t think he feels hopeful. Since my MRI and PET scans did not pick up the progression at the base of my uterus, it must be evaluated via pelvic exam. At this point, if there isn’t enough improvement, I will have to go the radiation route or another route. I just have to wait and see.

The last four nights, I am still running very low fevers. They only last a couple of hours. The doctors cannot determine if these low-grade fevers are related to the bladder infection, cancer, or another infection in my body, but don’t seem to be concerned at this time. Blood cultures have not grown anything so far. I do however, wonder what is causing these fevers. So they want me to delay starting chemo for another week---gee I hate doing that.

I was released from the hospital today and will start antibiotics in pill form tomorrow. Mentally I feel like I’m on a never-ending, run-away, out-of-control, crazy roller coaster ride, and just don’t know what might happen next. I’m afraid because don’t know if I’m going to survive this ride or not. What a horrible feeling.

I sent out copies of all of my records for a second opinion today - hopefully I will hear something very soon. I’m trying hard to take it one day at a time and remain strong and positive for my 2 daughters. ages 22 and 27. I’ve been very open and honest with them on every level except I have not mentioned anything about my uncertain prognosis. I feel there is no need to have them worry about that until I know. Since both of my oncs don’t agree with each other---- makes it more difficult and crazier for me.

I would love to hear your thoughts, ideas, suggestions, advice, anything!
Thank you! Joanne