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

I have blocked him!

Scuttlers - great post.

Chrissy - It is a shame that the thread that you started to help others has been interrupted in such a manner. I believe that it will get back on track once the focus comes back to where it began. I too like that I can come here to share and even learn about the various paths of stage iv.

I echo the sentiments above, but let's follow Chrissyb's advice. Block the troll, don't acknowledge him any further. We have responded, commented, now time to move on. Ignore him. Let's get back to business.



Michelle, from what I can understand from your post, you had chemo, followed by surgery. The chemo is to shrink tumors, especially large ones like yours so that lumpectomy is possible. Cancer cells are very sneaky and hide out lots of places, usually found by chemo since those drugs go pretty much everywhere. However, if there were a LOT of those cells in your lymph nodes, they will sometimes still be positive after chemo, so it looks like at that point you went ahead with mastectomy and lymph node dissection. This in and of itself may be curative at this point, but the radiation is one more weapon to eradicate cancer cells in the area they are most likely to be lurking - the breast/chest/axillary region. In most cases, this will take care of it and you will have long-term cancer-free years. It is not a guarantee, there are still some women who progress despite the most aggressive treatment available, but you are doing everything you can to improve your chances. The main thing is winning the battle "between the ears", that is, keeping your brain away from fear and anxiety during this time. Ask good questions, like you did, take each day as it comes, find at least a few moments of beauty and joy, and know that there are many people who love you, no matter what!



Please let us know if you have other questions, there are so many here who are willing to help and support. I try to make sure I have very good medical references to back up anything I post, I don't rely on just my own experience, although I do share my experiences, but I try to make sure people understand the difference.

I think that what they are saying is once it has spread to other places (mets) it doesn't matter how early they detect it. Unless it is one met and tey can blast it.  What matters is how you respond to treatment/s. So yes some can live a long time and may get to NED.  That has nothing to do with how early they catch it but how well the tumours respond to the treatment options. That being said it does tend to show that those living with only bone mets can manage it longer then those with soft tissue involvement. Mind you everyone responds differently, no matter where the involvement.  This disease is so complicated.  

I hope that helps. 

I like our ladies here. We know how to deal with difficult people. Tell 'em, block 'em, ignore 'em and then get back to business.

Well said Linda, nicely done. Scuttlers too, you tell 'em!

Michelle, please feel welcome to come back and ask. If no one has the answer they do a great job at finding out and the amount of personal knowledge here is immense. Why not share it and help others, that benefits all of us.

Awesome bunch of women, no messing with us. Have a great day ladies.

Moira

Just found this thread and just wanted to say I think it's a great idea. I don't have a great deal of experience (yet) so I'm not sure how much I can contribute, but I will be keeping an eye I this. Maybe also the fact that I'm in France and therefore in a different medical system could be interesting from time to time with regard to responses? We'll see. In the meantime, I'm reading away and gaining plenty of information. For myself. Thanks!

Hi barsco

Thanks for the welcome.

It's tough to have to be here, but I'm very glad to have it! Have posted a few times on the stage IV thread, lurking a bit too. Getting to know the names and how it all works.

I've only been here for a short while, but logging in to see how everyone is doing is becoming an integral part of my day.

Thanks everyone!

I know the question of mets to hips has come up before, but when I search it I can't find any posts that say what it feels like - is it actual pain, soreness like you would feel from over exercising or pulling muscles, or something else? Also, if a bone scan is clear, could mets to hip come about within months of the bone scan or would it have been picked up at that point? I'm thinking my hip is sore due to spinning, but of course I'm worried now because its been sore for a few weeks. Bone scan in November was ok, and MRI of lumbar spine showed some degenerative/bulging discs. I wouldn't descibe it as "pain" but more like a soreness. Thanks for any replies & to Chrissy for starting this thread.

In answer to the "could mets feel like this" question: mine feel like a pulled muscle in the area. I have cervical spine mets, and it feels like something a good muscle rub would take care of, except it doesn't . If your ache is symetrical (both hips, etc.), I'd point the finger at osteoarthritis or SEs from anti-hormonal therapy.

As always, if the pain persists for more than two weeks, go get it checked out.

My met in the spine didn't hurt at all. Onc was surprised by that but it never did hurt. When I got my mets in the hip it felt deep and achy and over the counter pain meds did little to help  and it stayed there all the time for over a month. Funnily enough while I was having rads for mets in my right hip I slipped getting off the table and landed badly and my left hip really hurt and yes small mets found there. Hadn't had any pain before the fall. Don't think there had been anything there in the bone scan 2 months earlier for the right hip. Mets have to be a certain size before they show up so maybe they were just big enough to see by then.

Usual advice is to get any thing that has not cleared up or improved in 2-3 week checked out.

One of the hardest things I have found with this is that  for every time one symptom is true for someone, it is not true for others. If only BC would behave in a certain way it would be much easier to know what was going on.

If in doubt, check it out. Using the 3 week wait check so you are not at the docs all the time!!

Moira

Hi ladies....I had 3 months of TC, then had my mastectomy. They found only 5 nodes left ( they suspected chemo had "melted" the others). I had only 1 positive, but they also found that there was still active disease. It was decided that chemo had killed about 60% of the cancer (less than expected...my MO had it in his mind I was going to be in remission bc my tumor shrunk well). So, tumor board said to do 2 rounds of dose dense AC.



My question is....have any of you had to go through this? Of course we all fear mets, but knowing that this was still so active for the 4 months I was doing 1st chemo round & surgery. Also, did any of you have the overwhelming feeling that it was going to come back....and it did? I'm a nurse & I've learned to listen to my patients when they have "feelings" about this type of a thing. They were usually right.



Thanks! -Andrea

Hello everyone! For those of you who had shortness of breath with lung mets, was the shortness of breath constant? Was it subtle? Gosh....I don't feel like my shortness of breath is anxiety (I have a lot of experience with that)!

Michelle

I had 2 lumpectomies and didn't get clean margin last year., SND 0/4 that time. Before the BMX surgery, we found a enlarged lymph node in MRI. They ask me back to ultrasound, since I will do Mx, and the node was borderline, radiology decide no need biopsy. I went BMX and Diep in Jan. everything goes well. On the pathology report, I notices surgeon got 2 residue tumors. But didn't do Alnd, I'm scared..suddenly I found a lump in my armpit last week. I did biopsy at this Tuesday... Now waiting.. I have no idea this is recurrence or residue. My case is so complicate. I wonder any one have similar experience?

jjl, I also had complicated case. First had lumpectomy, clear margins. Had recurrence a year later, had BMX, clear margins, positive nodes, tried tamoxifen after lumpectomy and also after bmx, couldn't tolerate it. Had another lump which was positive, so am now on AI and afinitor (everolimus), doing pretty well with them, hoping they control it. But I have had so many SEs from so many drugs, so it has been tough to find something that I can tolerate and that will work. Right now, today, I am doing well overall, just not happy with the fatigue that keeps me from doing everything I did before, but I am learning patience (well, sort of .... ).  I also had a nodule that turned out to be suture granuloma, so not everything that pops up is cancer. The waiting is the toughest part. Take some deep breaths, try not to hyperventilate with that, know that you are not alone, even though you feel like you are.  Let us know how you do.