My 1st Post Here- Mom dx w/ Stage 4 in May

Hi Everyone,

I wanted to introduce myself, since I've been reading here night & day since I found this site. Although I haven't posted before, the wonderful advice and loving support here comforted me and gave me hope for my mom.

Mom is 66 and has always been healthy and full of energy. I'm an only child- she raised me by herself and we've always been very close. She has been a huge part of my kids lives (they are 14 (daughter) and 18 (son- just left for college). She took the kids every wknd when they were younger and made sure that those times were full of laughter and fun. Basically, she's an amazing person that has worked incredibly hard all her life and done everything for others. And now that she was getting close to retirement after working 60+ hours weekly for over 30 years, the cancer dx hit.

She had been losing weight for several months and I was concerned about that, but she said she felt fine. I just had this awful feeling that something was wrong- however I'm a worrier and I had always obsessed over my mom getting sick, in part because she never went to the doctor for any checkups or health screenings, and also because I love her so so much. Just thinking about her aging used to give me a panicky feeling. Anyway, she was getting dentures and after she got them, she really couldn't eat much and became quite emaciated. Then she was having SOB, and feeling weak. Finally she went to the walk-in doctor and he said her vitals were fine and she was dehydrated. Two days later I got a call from my aunt at 1 AM that mom was at the ER. Turned out she had large bilateral malignant pleural effusions, although we weren't told about the malignancy until a week later. She stayed in the hospital for 9 days, and although the nurses and CNA's were AWESOME, the way it was handled was a mess. There were too many dr's saying too many things and we were never sure what was happening next. I have some medical knowledge so I was able to understand most of it. After a couple days, I discovered that they had found a large mass in mom's right breast. She didn't want me to know about it, but I told her I wanted to be there every step of the way. The 1st night in the hospital she said to my aunt,"I hope Dee's not mad at me if it's something serious." (I'm Dee). That breaks my heart and also tears me apart thinking that she must have noticed the breast lump and perhaps not sought medical care out of fear or not wanting to "turn my world upside down", as she put it to my aunt. I wish she had gone for health screenings, of course, but that's no gaurantee either, as unfortunately many women on here have found out. Doctors miss things. Oh yeah- on top of all this, my mom had had a heart attack! They had to do a cardio cath and all kinds of tests for her heart to see what happened, but we were relieved to find that her heart fully recovered. A NP said sometimes when ppl are under tremendous strain/stress they have heart attacks spontaneously. Mom worked at both jobs until the day before was went into the hospital although she could barely breathe, so that made sense to me.

  After a week in the hospital, this little turd of a doctor who looked about 15 came in and, without preamble, announced that the cancer (never mentioned to us before as a definite) had spread throughtout my mom's body and bones and the prognosis was very bad. I said,"But there are treatments..." And he said he "didn't want to be negative" but at this point, he doubted any would work. Then he added that was why they wanted to send my mom home ASAP- to die obviously. I was heartbroken and can't imagine how my mom felt. It was just impossible to comprehend. About an hour later, the turd came back and annouced that he had "run into" the onc from Dana Farber and things "weren't quite so grim as originally thought". Thank God, Dana Farber was across the street. We got a great onc and 2 weeks later we met with him, he told mom same thing I read- it's treatable but not curable- and started her on Femara and Zometa. If I have any advice for anyone new, it is to NOT let any dr who isn't a specialist in the field give you or your loved one a prognosis.

  Mom kept having SOB for a couple weeks after the hospital (she had thoracentisis while there, over 2 liters each lung). The dr's were amazed that the fluid wasn't building up quickly- they were kinda in limbo cuz there wasn't enough fluid to do the Pluerx catheter but enough to cause SOB). They sent her for another thoracentisis, since the others gave her so much relief, and afterward she got worse over the next week. Went for followup- she had a phneumothorax (collapsed lung) AND trapped lung on the right side. So they finally put the Pluerx cath in to get the air and fluid out. Disconnected "the box" and sent her home the day after- she's been great ever since. Not quite the same lung capacity due to trapped lung, but plenty of energy and no pain (she never had any pain). She has mets in the spine, femur, a few other bones I can't think of, pleura, lungs and several lymph nodes. But on the 3 month scan, the fluid in the lungs was minimal, bone mets were stable or regressing (hard to tell) and there were several lymph nodes and a small nodeule on the adrenal gland that the onc could no longer find on the scan! The breast mass has gotten smaller and an enlarged lymph node in her underarm is no longer palpable. I'm so grateful.

  Mom prefers not to research her cancer or ask too many questions at the doctor re prognosis, grade of tumour, etc. I would like to know more- all I know is that it is Stage 4, ER/PR+, HER-, and was found in BOTH breasts- small mass in left tested + also. I would like to know more, but would never ask ?'s at her appts (I go to all of them) becauise she might get answers that scare her/ruin her positive attitude. She has always been able to put bad things out of her head- before the dx that might not have been always good, but now it's great. I just try to take it one day at a time and learn as much as I can. I pray that she will stay healthy for a long, long time... most of all I can't stand to think of her suffering. The hospital was terrifying for her- she has always been afraid of doctors (although her dad was a dr) and ambulances make her sick if she even sees one. So landing in the hospital was her worst nightmare come true, but she still managed to be very brave. I love her so much. Sorry for the looong post, just wanted to share. Thanks for "listening" and I'm sending prayers & good wishes to everyone here.

Dee