New De Novo diagnosis

LI77

I was just diagnosed yesterday with de novo MBC. The PET scan showed "1. large hypermetabolic left breast mass, consistent with invasive ductal carcinoma. Regional nodal metastatic disease to the left axilla. 2. Numerous lyctic osseous metastases. Many of these are small, but a lesion in the L2 vertebral body show significant osteolysis and could be prone to pathologic fracture."

I first noticed the lump out of nowhere in October, as I definitely didn't feel anything out of the ordinary over the swim season (the way I put my swimsuit on, I would have felt this). I convinced myself that it was nothing, and procrastinated about having it looked at, since I have dense, lumpy breasts. I started having back pain a few weeks after. I obviously did not think they were related.

I am still trying to process this.

My MO has me starting tamoxifen and ibrance. Radiation starts Tuesday for the spine.

I don't know what questions I should be asking. Does the treatment sound reasonable? I'm 44 and premenopausal.

Anonymous

L177 - sorry you are joining us but you will find a lot of support on BC.org. The beginning is so hard because it is shocking and overwhelming for anyone and most likely more so when it is de novo and out of the blue. Your treatment does sound reasonable. We have a great discussion thread for Ibrance users. Here is a link:

https://community.breastcancer.org/forum/8/topics/...

Join us on that thread - quite a few of the members have had targeted radiation, too and can help you with questions on that.

I have found Ibrance easy to tolerate. I have continued to feel good enough to work full time and have continued to have a pretty active life, which I am very thankful about. Ibrance is usually started at 125mg dose. I had two dose reductions in the first year due to low white blood counts (neutropenia which is a very common side effect of Ibrance). I take it with a different hormone suppressing drug as I am post menopausal and took femara with my original dx.

There is also a thread in stage IV for De Novo patients and you willfind some good information there, too.

Hang in there ! I hope to see you on the Ibrance thread.

KBL

Hi, LI77. I'm sorry you're joining us in the de novo arena. I started a thread a while back. Please feel free to join us there, and please keep us posted as you go through treatment. You can copy and paste your post there as well. That topic has 46 pages, so maybe you could skim through it

https://community.breastcancer.org/forum/8/topics/876918?page=46#idx_1378

illimae

Ll, we know what your going through and it's scary, crazy, devastating and truly a WTF point in time but this feeling will become background stuff soon. Once you get into the routine of meds and appointments, you'll find a type of balance, it's sucks but you'll adjust. Also, please do not blame yourself, procrastination of a few months did not cause this.

Also, try not to let dr. google mess with your head, many stats on prognosis are old and don't account for the medical and pharmaceutical advances being made every day.

As others said, please join us on the existing De Novo thread, lots of good stuff and support there.

For your question, yes tamoxifen and ibrance is pretty much standard, first line treatment for your age and ER+ BC, both meds are usually tolerated well and effective for most people but I'll warn you honestly that chemo induced menopause is probably going to be difficult for you and your significant other (if your not single). I've always thought old ladies were cranky, I get it now, lol

ParakeetsRule

Welcome to the worst club in the world. There's also Bone Mets thread if you want more information about that. If you're on Instagram I highly recommend following nicknacklou. She was also diagnosed young de novo with bone mets and her outlook on life and ridiculous antics cheer me up on a regular basis. ♥️

SeeQ

LI77 - I'm so sorry. The de novo diagnosis is such a shock. Things will get better after you start your treatment and things settle a bit. Sending cyberhugs your way.

LI77

Thanks, all of you, for your responses. There is nobody in my life that can possibly understand what this is like.

It seems that there are a lot of us in TX. I'm north of Houston.

Anyone else use humor to keep themselves sane? After I told her about my diagnosis, my best friend told me "I know you're special, but did you have to be this extra?" Lol

Anonymous

LI77- you are so right, there is virtually no one "in real life" for me that truly understands what this is like. Yes, many of us often use humor to keep ourselves sane:) The community and camaraderie on bc.org is such a huge support and I have learned so much from people on here - about my own treatment and what to expect on this and when my treatment changes.

Look for a stage IV thread about " how about a Stage IV gallows thread ". One of my friends on here has a T-shirt she created with the words "not dead yet " .

LI77

I have this t-shirt (from before diagnosis). Somehow it seems even more funny to me. But I don’t think I’ll wear it for a while, as my 9 year old will probably not see the humor in it

https://cdn.shopify.com/s/files/1/1127/5444/products/somedaydead-men-n.jpg?v=1571439525

illimae

Ll, I’m in NW Houston and I too use humor a lot, always have. I have a dark sense of humor thread, although not active currently and I make lots of death jokes, hub’s doesn’t find it so funny but I do.

DDIL

Hi L177,

I am new to this too and I can tell you this group is so helpful. It’s a shock to hear Stage IV metastatic breast cancer you just can’t process what is happening. Your mind reels too. I just started on Venlafaxine to help with the anxiety. I started walking on the treadmill 20 minutes a day to help clear my mind. You just hope and pray the meds they give you work - there are so many women who I hear have great results - I’m hoping for the same. I’m right there with you L177.

amontro

L177 -

I started a Stage 4 Gallows Humor thread. I got carried away and posted almost every weird thing I could think of from my perspective including my collection of irreverent tee shirt sayings. Others have joined me, so put your tee shirt link on there too.

Also, I find that my sense of humor eases the uncomfortableness (is that a word?) around my family. Keep it light for your young one, just to take the edge off.

DivineMrsM

L177 and DDIL, I concur with the great advice given on this thread. And take heart, there are women who started Ibrance when it was approved by the FDA five years ago who are still on it. To give you more hope, I was diagnosed with mbc eleven years ago. It's been a roller coaster ride at times but I live a reasonably good life. I don’t mean to offer unrealistic expectations. Just stay open minded to the possibilities.

Tho the diagnosis sucks (to say the least), there's great support to be found on this forum so I'm glad you us so quickly. Best wishes to both of you. It's rough at the beginning. Hang in there!

amontro

I agree with DivineMrsM.

No realistic expectations, be open minded, and strap on your seat belt for the ride.

Lean on this group if you have to.

As I've said before, you won't get better, but you'll be able to manage your feelings better.

Here's love to all of you.

AP3

Hi L177,

So sorry to hear about your diagnosis. It's always sad to see a new poster on here, for the obvious reasons.

Is you MO doing anything about the lytic bone lesions? I would have thought that Denosumac monthly should have been prescribed to help heal your bones. (Apparently it actually helps to kill the cancer in there too)

LI77

I haven’t been on here for a while, but I’ve been catching up on the threads. I’ve had quite the week. I mentioned that when I started radiation therapy, my back pain was getting worse every day. By last Thursday, it was bad enough to ask for pain meds, and my MO prescribed Norco. Besides making me nauseated, it did nothing for the pain, which kept escalating. On Monday, the pain and spasming were so intense that I needed a friend to drive me to radiation, and I needed help on and off the table. On Tuesday, I literally could not get out of the recliner I’ve been sleeping in. The spasms and pain were too much. We had to call an ambulance to take me to the ER. Apparently, I fractured L2 sometime after the radiation started. So now I’m back at home with a back brace, pain meds, steroids, nerve pain meds, muscle relaxers and other drugs. I’m afraid to get up because I don’t want the spasms to come back. I still need to complete 5 more radiation sessions and am not so sure how it’s going to go tomorrow. My doctor talked about doing the cement procedure sometime after radiation. And I’m also fighting with my insurance company because they don’t want to cover ibrance because my MO prescribed tamoxifen with it. So I’m still not on meds and it’s been weeks. Ugh