If you are not Stage IV but have questions, you may post here

I have been an idiot, and I really don't like what I am thinking now.  I have had blood in my urine for a year.  My first thoughts were kidney stones, because I have had the "joy" of that experience over a decade ago.  I went off of Aromasin last January.   I can't believe I just read the symptoms of Ovarian cancer, and ... I have every symptom plus some....  Do I waste time with my OB/GYN or go straight to my oncologist?  I can't tell my best friend. She just lost her dad to Lung cancer.  We have been BFF for almost 30 years. I am not saying anything to my husband until I know.

Mel'sMonte you are not an idiot . My sister has a good friend who TEACHES women how to watch for symptoms of ovarian cancer. It's her JOB. She got ovarian cancer after a short spell of ignoring all her own symptoms. Her diagnosis came fast with a bloated stomach finally which she tried to ignore until it was pointed out to her. She was treated and is fine now after rads and surgery. Your symptoms have been around for a long time to be ovarian cancer. I would see a Urologist if I were you to be checked for bladder cancer. Good luck sweetie we are here for you.

Well, thank you everybody for your input.  My OB/GYN has moved too far away for me to use.  I called my oncologist and got in the next day with a nurse. They pulled blood, (not from my portacath, because it refused to give) and all the blood work came back normal. Tumor markers were good.  They gave me a CT that day.  Nothing appears on it.  I have already seen my urologist, and it isn't coming from that "system".  My husband was frustrated with me over weight loss and lack of appetite for any food, asked me why I thought I had such a problem.  I asked him if he really wanted to go down that road, and when he did, I told him my thoughts.  I had an Endoscopic Ultrasound and biopsied on my stomach.  I was told I would have the results in 4 working days.  I have never been so frustrated getting results.  One person who answered, said she would pass the message on.  Anyway, finally had my husband and Oncologist call the a-hole... and within minutes, he finally called me back, 3 days after my results were due.  Everything he biopsied came back clear.  So, my oncologist is trying to get me an appointment with another OB/GYN closer to home.  Hopefully quickly.  What "was" spotting, has now turned into bleeding.  I haven't had a period since my first chemo in October 2009.  My pelvis tenderness is all time high.  I have lost 30 pounds per my oncologist, who having been told by the nurse I was seeing,  about me, she came and talked to me.   I have blurry vision frequently.  Besides being so concerned about my current health, I am terrified of what insurance companies are going to do.  If they have a $13,000.oo deductible, I might as well just plan my funeral.  Every year, $13,000.oo deductible... but that is something I just have to let go of.  I am so distraught about it all, I am not getting anything accomplished.  Binge TV watching... mindless games on my ipad.  Trying not to think.  Waiting impatiently for my appointment with an OB/GYN, preferably before the new year, since I have met my deductible this year.

Good morning all. I'm a little confused about my staging actually. DX with mets to liver and lung July 2016. Did 12 x Etoposide and Cisplatin along with 6 rads to my chest to zap a 7cm tumor on my heart, specifically my supra vena cava which was the jumping off point for the whole DX becuase of major swelling to my upper body. In October my MO said I had a complete response to TX which is wonderful. He then had me meet with the RO to talk about WBR to prevent brain mets. I'm scheduled for December 5 for 10 TX over 2 weeks.

My question is really side effects from WBR. Long and short term. I've been doing some reading on the brain mets boards but don't feel right chiming in because I presently don't have brain mets. Any comments or advise is greatly appreciated.

I'm being told and also through some reasearch I've done myself that the next stop for mets to present is brain mets with being lung and HER positive. Chemo doesn't break the blood brain barrier so if micro mets are there they wouldn't be wiped out that way. CT scan didn't show any thing and I can't have an MRI right now because I still have my TE in. I was hoping to have already completed by recon by now but all this kicked up in July. So its like should I be grateful that this is an option or what??? I was so bowled over when my MO told me the positive news 3 weeks ago I never thought to ask about staging. Then I met with the RO a week ago. scheduled the mask fitting and rads TX and figured I could get some answers in the meanwhile

Thanks Mara51506

I wonder if the dose is low with prevenative vs not.. No mention of Steroids at all or nausea meds either. Yes was advised about the hair loss. Damn and it was just growing back. Hopefully it will again. Edited to add that I did well with the 6 doses I received in July for the heart tumor. Had some fatigue but that was about it for SE's

Okay, I've read up (Googled) some cases of "preventative" WBR but am still concerned for you. There see to be issues of cognitive difficulty afterwards, I just can't imagine. I am currently being checked for brain mets and wonder if they offered me wbr if I would even do it without a definite diagnosis! There ARE chemos that cross the blood/brain barrier that must surely be less invasive.

From what I remember when Frankie had WBR, she only lost her hair where the zaps went. The rest stayed.

MyLeftBoob - I'm with Barbe. i would definitely get a second opinion. It was my understanding that BC mets usually to go lungs, liver, bones or brain but I haven't heard of preventative rads.

MyLeftBoob - do you have an MO (medical oncologist)? I would guess calling an RO would include discussions about radiation, but you need to discuss other issues too.

MLB, this sounds like a situation where getting expert advice including a second opinion, and individualizing treatment, is essential. One thought, maybe a silly one, but could you choose to have the TE removed in order to get a brain MRI?

Minus Two and Barb1958. I did speak to both my MO and the SR MO, the attending MO and my RO and they're all highly recommending it and I do in particular totally respect my MO and the Sr.'s MO's opinions. I also have 2 friends that are stage IV and they said they would do it in a heartbeat. Particuarly one gal who mets to lung, liver and bone where treatment is no longer working for her and she doesn't have this option. So I am reaching out everywhere for opinions and feedback. I read that article Barb1958 among others but I appreciate you sending the link.

Shetland Pony

I've actually called my plastic surgeon to see if she could do the swap out in the very near future for that very reason. I was going to have a lift to the good side but I'll just leave that alone. Why bother really.

Mara

You read my mind I think. I actually just made a note about hippocampus sparing to ask about that. I'm also going to do some more reading here about WBR, I didn't realize it was a hot button topic. I just came back to BCO a couple of days ago actually so need to spend more time reading through the threads.

MLF I hope you understand we post out of concern and to gain knowledge. As you said, you wanted feedback. All is not rainbows and unicorns farts here. This is where the rubber hits the road. There are others reading these posts learning off your experience and our questions. It's all good.

About the comment of permanent hair loss I've only known of 6 or so friends here that had WBR and none had their hair growt back. My underarm hair isn't growing back and my RO told me to not expect it to. Pardon my ignorance.

I am still confused about your stage 4 friends wanting WBR. I am Stage IV myself and am holding out on something like that as long as possible. And certainly not before mets is confirmed. I do believe it is VERY effective and pray it all works out for you.

Good morning.

I am the youngest daughter of three and we are all trying to pull together to pay for my moms next round of chemo. Please visit the link below. Have a blessed day.

https://www.gofundme.com/n6-my-moms-medical-fund

Very common to take the wait and see approach. He's looking for growth or for it to resolve itself. Also, your period can make a difference too. I think pea sized would show up on ultrasound...how small are the peas where you live? LOL