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

Hi

Heads up on the markers make sure you get regular imaging.

Went from 36 to 108 now liver mets no imaging for almost 2years. I was told markers were fine!!!!! No imaging nessecary!

Both should be checked! Always!!!!!!

Hi all, I was diagnosed at 35 with stage 3 IDC. I did all the treatment and then some. I'm on OS and an AI. For about 2 years I've had back problems. I had an x-ray and MRI and it all showed fine. For the past 8 months I have had hip and thigh pain and much worse back pain. I know I have problems with sciatica, that happened long before cancer. But the hip pain is pretty bad. My blood work looks great. I am having a MRI next month. I am wondering if anyone else had normal blood work and this kind of pain. Did it turn out to be something other than cancer? Thank you!

hi MeTOO, I had similar issue

Pain intensified over 8 months or so.

My hip, was so bad I thought I broke it. I could barely walk. I had an MRI and emergency surgery the same day by the neurologits that afternoon. It for me was not cancer but a VERY compromised and compressed spinal cord from two herniated discs. In words of neuro, " I was in trouble ".

They did spinal cord decompression and also fixed the two discs.

So telling you this as it can be many other things and I am glad you are having an MRI.

Good luck! Praying for you.

Thank you all for the answers!

she will have the bone scan tomorrow and i hope the results is on our side!

Happy thanksgiving to everyone

Thank you Chrissy.

Im getting dressed now to go for the u/s.

❤

Dear friends,

I thought of posting in the "not diagnosed with a recurrence but worried" but I'm SO worried I might have bone mets... I think I should just post here. I've been lurking for a few weeks, after having been gone from this site for several years, trying to just move beyond this and focus on my girls (Originally diagnosed in 2012 - see more info below).

I'm sitting here this early morning, about to get my girls up for school (4 yo and 10 yo), and then I will be driving two hours for an appointment at Univ of Michigan for a clinic appointment. I feel so sad and hopeless. I just thought it was time for me to write and seek support from you dear people. We moved to a new home (same town) in late September, and in the midst of prepping our home to sell (beginning in August, my husband herniated a disc and was essentially out of the packing, moving, renovating, unpacking game until now - he had surgery three weeks ago. I ended up doing it ALL. And subsequently hurt my back as well. Many times over those long weeks, after putting in a new kitchen floor (!) or carrying too many boxes, etc., I could feel the back pain creep in. Fiinally I started pyhsical therapy at my husband's urging- we can't BOTH be down for the count! I've been in physical therapy now for over a month and I'm not really getting any relief.

I know when I tell that story, it absolutely sounds like a simply injury. Only my symptoms have really changed in the subsequent weeks and seem to be worsening. Earlier I might get a day of relief, but now it's everyday. I currently have a nagging, unending burning sensation in my tailbone. I have tingling in the toes on my left foot, and I have an occasional sharp twinge in my mid back vertebrae. I also feel a sensation in my sternum (not pain, really, just discomfort?), and an occasional burning sensation in the upper verterbrae, neck area. Oddly, when I sleep, all of these symptoms go away. I wake up with no pain/discomfort, but as soon as I get up they start in again and are there all day long, often worse by the end of the day. (Or maybe I'm just tired of it all by the end of the day.) Oh, and most recently - no pooping these last three days.

My crazy-worried thoughts tell myself this: I had bone mets all along - and the intense physicality of single-handedly moving our family just broke what what already weakened by bone mets, They were there - with no symptomology - and I overdid it and now vertebrae, coccyx, sacrum (?), are fractured, etc.

Is that a possibility? Can anyone offer me any wisdom or perspective? I don't have any scans scheduled yet. My onco wanted me to start with my PCP and an MRI, because they thought from my story it was injury induced. Well now these injuries don't feel the same - they feel ominous. (Burning tailbone and the rest???). I asked to see my onco first and today is the day. I am terrified. I don't know how to live with this. I don't know how to not live without feeling in utter despair from my girls losing their mother. I don't know that I can do this. Any help is welcomed and so appreciated. Thank you, thank you, thank you. (Currently sobbing at the keyboard.)

(Edited to say: maybe I'll copy and post this message to the "worried and undiagnosed" thread - I guess that is a more appropriate place. Blessings and peace to all of you lovely sisters.)

Esmeralda-I was diagnosed de novo in July 2017 bone mets only. I never had an ache or pain. I was waitressing 4-5 nights a week from 4-10pm. I felt great. The only symptom I had was fatigue. I was very tired especially in the morning. I would bring my three kids to school and come home and nap for a few hours. Then I had a lump pop up in my right underarm and a lump in my breast shortly after. Yours sounds more like an injury but definitely get it checked out. I never apologize for going to the doctor. Don’t let anyone shame you for worrying too much. We’re here if you need us.

Jill

Esmerelda-Sounds like nerve pain to me. Maybe from compression of the spine? Not sure, but it does not sound like the pain I experienced when diagnosed with bone mets. Best of luck, MJH

Dear Bez, it is more likely that you are having side effects due to chemo. You should call your oncologist and let them know that you are having these symptoms so they can treat you before your next chemo. I also had a bad cough following taxotere, so I can relate.

Take care!!

Thank you for your answers.

I'm taking AC mix of chemo for now, cough started 5-7 days after first dose, and started to be a little rougher after 2 weeks, in the same time as i got 37.5 degrees temperature.

After 3-4 days temperature is gone but cough is still here.

They did MRI of both breasts and chest wall before surgery, everything was clean.

Surgeon said tnat PET-CT is not necessary, that I should do it after chemo

No, I didn't have any signs of asthma in my life

I'm so sorry to hear that they suspect lung mets dya, keeping my fingers crossed that the spots turn out to be something benign.

There are several women here who have been on only Herceptin or Herceptin & Perjeta long term, 7-10 years. As my MO says, it's a maintenance treatment and as long as your mets are stable and not causing any problems (or you are NED) you can stay on it as long as it works. If your mets are growing and causing trouble, then it's time to consider other treatment. That doesn't always mean systemic treatment (chemo), if the rest of you is responding well to targeted therapy there are usually options for localized treatment of mets if they are causing problems. As a general rule of thumb, if the mets are small and not causing any symptoms, there's no need to rush into a change of treatment. At Stage IV it's all about quality of life.

You might want to look into Kadcyla (f not now, for the future), which is a targeted therapy that combines Herceptin with emtansine. It seems to be fairly easy to tolerate, more so than a harsher chemo. I'll be moving to that next when I finish this round of Taxol. I seem to be the opposite of you - my mets respond very well to H&P (my liver mets have completely resolved on H&P) but when I stopped chemo I had a primary recurrence. Kadcyla seems to be the best of both worlds (hopefully).

I have posted twice in the last 5+ years and fortunately I have had no need for support in quite awhile. I just again want to thank you all for the support and service you offer to this community. I find it so admirable and may you know what a difference you make to many. Bless you.

Thank you for opening this section and answering some questions.

I was wondering how much impact the location of mets has on prognosis. I get the impression that a lot of the very long term survivors started with and mostly stayed with bone mets. My mother died of de novo stage IV, however about 20 years ago, and it had already metastasized to the brain by the time she caught it. She survived less than two years from diagnosis. Is there anything to this impression I've got?

As I learn more, I am sort of constantly surprised by how diverse breast cancer is. I guess I wonder how is stage IV kind of subdivided (like we get a's and b's in the earlier stages now) and how much it has to do with location of mets, versus hormonal/genetic components of metastatic tumors, etc.