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

Hi there, I had CTs, bone scans, brain MRI and heart test prior to starting FEC-D regime yesterday. Scans all clear with the exception of lesions in liver that are not suspected as cancer. I agree the lung nodules are something else. The FEC-D regime is a heavy dose of chemo. My oncologist told me we are going to hit this hard and breast care nurse said the same - using the big gun!

I think the comment about not going straight to FEC-D means if your wife had mestateses further afield e.g. in lung the diagnosis would be stage IV then treatment becomes palliative. Aggressive chemo would not be be the best choice first up.

My stage is 2b with lymph node involvement triple negative. My tumour is small but because of triple neg and the node the chosen regime is FEC-D. It appears FEC-D is not a commonly used regime in the USA...

Re lung nods is aquestion for your next consult just so you are clear. I have found myself with many follow up questions and keep a book to write then down.

PS. Yesterday day one I felt YUK, headache and waves of naesea, slept on and off with several periods of wakefulness but this morning so far slight heache but that's it. Mind you I haven't gotten out of bed yet!

Wishing your wife and you good luck on FEC-D. Love to hear how it goes....

Helen.

thnq Pajim for your taking time to reply.The right lung nodules are not fdg avid. But the left lung nodules have shown mild fdg uptake as you can read in the report.Also these fdg avid lung nodules are pleural based.

I also met with her pulmonologist to consult about lung nodules.And he simply told that he can not do anything with these nodules.Because of the size and location

indahood, I'm so glad you were able to connect with your friend, although sorry to hear about her situation. As you may realize, mbc isn't always a straight decline. Situations can and do improve, especially if a med is failing and a new one ends up working much better, even for a few months. Hopefully your friend has some better times ahead, and perhaps you can continue to stay in touch with her, especially if you have wonderful past stories to relive with her. Also, since she can't drive -- and assuming you're in the same area -- is there anywhere she might like to go that you could take her -- the beach, the mountains, the town she grew up in -- or anywhere she may be reluctant to come right out and ask someone to drive her? I think that would just be such a lovely gift if she's not very mobile but well enough for a few hours out of the house.

Hi, Johnny. I'm sorry about your Mom's dx, but just with the little you've shared here (ILC, large tumor), chemo does sound necessary. But a second opinion IMO is never a waste of time, as all oncs do not think alike, and some just have different ways of communicating the same info' that gives us a lot more clarity and understanding about the recommendation at hand. And if your Mom isn't already at an NCI-designated facility, that would be my first choice -- just because they are exceedingly thorough, they see the most breast cancer patients, so will have the most expertise re. her particular subset of patients (her age, ILC, any pre-existing conditions, etc.), and they are on top of the latest research because they're the institutions doing it.

As far as mets without positive nodes -- yes, it happens because bc cells can also travel via blood. However, what I've observed is that it tends to happen later. In other words, someone had bc 5 or 10 years ago, turns up with metastatic disease, and is dismayed because it wasn't ever in a lymph node. However, new research is showing that bc cells can and do travel to and seed in distant sites without positive nodes, so all the more reason for a recommendation for systemic tx, because with a large tumor, it's probably been there long enough for this to potentially happen, depending on the aggressiveness of the cells.

Hope this helps. I hope even more your Mom's bone scan is totally clear, as I think it will be. And let me give you a link to the list of NCI-designated cancer centers.

https://www.cancer.gov/research/nci-role/cancer-ce...

Please keep us posted! It's wonderful that you are reaching out and supporting her this way! Deanna

Indahood...glad we could help you. I agree with dlb. The worst part of being Stage IV with bone mets for me is that I'm not independent at the moment because of the amount of pain killers I need for the awful pain. Your friend might appreciate being taken out. On the other hand, she might find it painful sitting in a car. I take two cushions wrapped in plastic bags, one for each foot, to brace my feet against the floor of the car and I have one behind my back plus a neck guard and then I'm fine and we have a a (I think you in the US call them SUV) which is really comfortable with a soft ride so be prepared for her to not want to be driven or to take lots of cushions since she's in pain. Perhaps she might just like to sit outside with you for company but without talking. Take your lead from her but, yes, don't talk cancer. For me, I'm totally sick of it and just want to talk about normal things. I'm still me. I'm not defined by my illness. It's great that you want to help her because some of us find that the friends who helped in the early days drop away after about a year if nothing dramatic is happening and a fresh face would be great. Good luck xx

Indahood....you sound like a sweetheart and just the sort of friend we all need. Just a note of caution if you don't mind - offer but if she keeps declining, leave it for a while and just call her to see how she is or to chat about other things. There are a lot of things she might feel a bit concerned about being driven by someone if she's in a fragile state physically or she might be worried about other drivers and being involved in a crash because of the state of her bones. Last week when my son took me to the cancer centre we had a near miss - not his fault, but the other drivers' - and I immediately pictured myself with a lot of broken bones and I'm not a worrier normally. With bone mets we can't rely on our bones to hold up and it's a constant concern. I'm glad you're not going to give up on her but I just suggest that if she doesn't want to go out, she would have her reasons. It's not that we become a recluse when we're Stage IV but some of us become self protective and, although the normal impulse is to think it would do us good to get out, we're always so tired and unwell, we're just not up to it. I can only speak for myself but I know I'm not the only one.

BigPeaches-I do not blame you for being livid. The prudent oncologist will draw serum tumor markers and review the imaging. He or she may order more imaging. This needs to be checked out to your satisfaction. It is possible to have mets after 10 years cancer free.

There is relief in sight. Many gals have had painful spinal mets treated with radiation with great success. If you do have mets, you will likely be started on a systemic treatment. Don't panic, it will not be like the chemo first time around-much more gentle and won't totally disrupt your life. Bone mets are manageable and can be stabilized for years.

Hopefully, these are not bone mets, and things will be resolved by orthopedic methods/ physical therapy. Don't rule out switching oncologists if you are not satisfied.

May the force be with you. MJH

Thank you, this is first bit of positive thoughts I've had in several days.

BigPeaches, I'm sitting here wondering how your onc's office could tell you over the phone and without seeing you that your back pain has nothing to do with your original dx?! If that came from an inexperienced staffer, perhaps it can be overlooked after mentioning it to your onc when you see him. OTOH, if that's representative of the extent of knowledge and follow up interest in that office, that's not the kind of care you or any of us needs.

As others have said, bone mets only -- IF that's even what it is -- is very treatable, with a very good long range prognosis. Do not believe anything you may come across on the internet, as newer txs in recent years have made a big difference in survival. One day and one step at a time, but I just wanted to encourage you to listen closely to your gut about your current onc when you see him. And an MRI, while helpful for ortho issues, is probably not sufficient alone to dx bone mets. Ideally you should now because of the concern (suggested by a doc I don't have confidence in either from your description), you should have a whole body PET or PET/CT, as well as total blood work, including tumor markers and liver functions.

Good luck, and I'll be watching for an update! Hugs, Deanna

Well, my oncologist office just called and I already have radiation scheduled for tomorrow before I even see the doctor and he's called in some steroids for me. He must feel pretty confidant its mets. I'll keep you updated after my appointment tomorrow. I'm confused, scared, and all the things I'm sure you are all familar with. *sigh*

Hi BigPeaches, I'm hoping Deanna will weigh before you go off to your radiation appointment tomorrow. I wanted to offer my thoughts too. I'm a bit worried about your Oncs rush to rads. I totally understand if you are having significant pain that the rads can help. But, I know I find it helpful to have the whole picture before jumping in. I know a series of tests was recommended earlier (PET, tumor markers, liver function, etc...). I totally agree those are very important to do. Also, what about a biopsy of the new tumors so that you can know whether the receptor types have changed. That's critical for long-term therapy. And is rads enough, does their need to be surgery to stabilize your spine?

I also want to join the encouragers. Bone mets can be treated for a long time, and the early treatments are pretty tolerable for most. I'm in this now a little of 2 years with mets to my hip bone and have had a great response to treatment so far. My story is very common.

Come on over to the bone mets thread and you'll find some folks who have had mets to spine and I'm sure they can offer some good experience.

Big hugs!

Hi, Nan. Hmmm... so many things to consider about your post. First, I was a bit taken aback at your onc's comment re. "too early for mets," as I don't believe there's a timeline or chart to predict a recurrence. But, that said, I don't necessarily think that's what you're dealing with, since the tests you've had have been clear, and a bone scan would have shown something as painful as you're reporting.

My first thought is maybe a hairline rib fracture that isn't showing up on x-ray. Do you recall any injury or stress to your ribs around the time the pain started? Is the rib pain only on one side? The fact that the pain radiates into your jaw is also concerning. Without knowing your age or full medical hx, I think checking out your heart would be prudent. Otherwise, I'm thinking something going on under your ribs, or perhaps referred pain that's actually coming from something out of place in your spine.

If I was in your situation, with pain as bad as you're describing, I would push for a PET scan, which should show more than either an x-ray or u/s will.

Absolutely let us know what you find out. The pain you're experiencing needs an explanation. Don't be afraid to advocate for yourself. Hugs, Deanna

I appreciate the concern and thoughts, more than I can say. The spine doctor told me that one of the tumors has already ate thru a good portion of the bone and one wrong move and I could be paralyzed. I'm in a back brace and can't walk without a walker, I assume that's the reason for the rush to rads. Spine doc scared me and I think he meant to, he seems very serious about all of it.

I'll let you all know what the onc says, he better have carved out some time for me because I have a long list of things to go over.

Nan-ask for a PET scan.

Best, MJH

Nan.... I don't often post on this thread but I do read it. I concur with Deanna. The bone scan would definitely have shown up rib mets that are so painful so I'd ask for a PET scan and other investigations. I have a lot of rib mets, at least one on every rib and, before tx started, I had stress fractures in all of them and the pain was nothing like the pain you're describing. It was sharp, intense and much, much worse on moving. I had to lie completely still in bed and could not turn over onto my side.

BigPeaches....I'm so glad you didn't follow the advice you were given to do physical therapy. I'm glad you now have your back stabilised before it was too late. I hope your appointment with your oncologist shows he has a good plan of management for you. Big hugs