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Hi ladies, I just happened to read this thread, and although there has been a response and many of you have more experience than I do, I have a thought for Mom2fourplusmore. I found that after my BMX I had shoulder pain and determined that it was a posture thing because I was carrying myself differently. This summer I began reconstruction, and now during the TE fill process I am having neck and shoulder pain. Although it has been explained to me that as I'm stretched in front, it pulls on the back/neck muscles. (Of course, my mind did go there, and I was concerned for a while.) A chiropractor has helped me a great deal, so although a massage was mentioned and sounds fabulous, I wanted to throw the idea of a chiropractor out there too.
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Astrid...I was waiting for a few days before I posted news about my rib / intercostal pain. I decided to take some Napoxen (anti-inflammatory) and it mostly disappeared. That was two days ago. I'm taking that as a good sign. It was soreness rather than a throbbing pain type of thing. I'm pretty resistant to extra radiation unless absolutely necessary as I am brca2+. I'm not sure if that is poor reasoning, but I am also prone to scanxiaty. Have you tried drugs for your ribs?
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Wildtulip, I never thought about that. I'm doing the reconstruction and I could very well be holding myself differently. I have a lot of nerve damage and muscle spasms so I flinch from pain quite a bit. I didn't consider that it could affect my neck. A chiropractor would probably be a good idea. Thanks.
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Hi Qinncat,
yes. I find ibuprofin helps a lot. the panadol osteo doesnt do much.
I have to say it was worse yesterday. definitely time to get to the bottom of it. Almost certain it isnt chostro.as it feels so different to that. As it is not worse at night, and not waking me from sleep..no big weight drop, I'm not thinking the worst. I'm thinking strong possibility of stress fracture..or bad muscle strain??
oh dear..I 'd like to crawl back to bed and hide for awhile quite honestly!!!
astrid(will keep you posted with scan news..I know there is radiation from scans, but in the bigger picture...well...you know! sending a gentle hug your way)
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Mom, I hope you find relief from your pain! Take care. Hugs!
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Mom, I didn't know you were getting recon! You have a big factor affecting your pain. Have you talked to your recon team to let them know you are in pain? They should be able to help you.
Wildtulip, you get radiation just from being outside in the sun! Don't be afraid of getting tests for that reason. I was blasted with 9,500 grays of rads this year (normal is 5-6,000) but knew I needed to do it to save my life. You have to balance risk.
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I got my pet results. A lymph node in my lung lit up. I didn't even know I had lymph nodes in my lung. It is off to CAT scans for me. Thank you all for your support.
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Fraidycat, I'm so sorry about the lymph node lighting up. Hopefully -- if it is in fact a few errant mbc cells -- whatever they put you on will zap it quickly! Let us know what the CT reveals. And not sure where you're being treated, but with UCSD not too far from you, a second opinion on your scan results and tx recommendations can't hurt. They're absolutely top notch. (((Hugs))) Deanna
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Thanks Deanna. I will call them today! I was kind of on auto-pilot when I was in treatment. I need to get proactive. My Onc is good but too busy. Maybe they all are hard to reach!
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Let us know what happens. And if you're calling today, you might wait and let them do the CT. I know too many women -- myself included -- who got to a bigger institution, only to find out there were issues with the scans or other tests done elsewhere. My bio page details some of my experience, but I had a similar thing happen when I was re-dx'd -- UCLA said the CT that was done locally wasn't really very good.
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Dlb, I didn't realize that tests could be different at different places. That disconcerting. I read your bio and noticed you also have IDC and ILC tumors. I was recently diagnosed with both. I sent a PM if you don't mind. I'd love to talk to someone with a similar diagnosis.
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Barbe, I didn't post anything about getting tests, so maybe you intended comment for someone else?
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sorry to hear bout your node too fraidycat.
best of luck with ct.
astrid0 -
Well I waited to post till after my bone scan. Looks like I have mets to ribs hip sternum and femur! I have biopsy scheduled for Monday. I will update when I know more and have plan in play!!!
Thank you again for all the responses to my post!
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So very sorry. Here's hoping for a plan that will knock the heck out of those bad guys!
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GooniesGirl I am in your pocket for your biopsy! I am so sorry to hear your news. It is so unfair
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Ah, thanks Wildtulip, it was Quinn my comment was for. We get radiation every day just being outside. In fact, just yesterday at the hospital I saw a chart that shows how much each radiation test equals being outside and getting radiation from the sun. A brain CT was the highest at equal to 8 months of being outside.
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I'm so, so sorry for your news GG.
Having a plan and a routine will help steady the ship.
sending gentle hugs and prayers your way
astrid.
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Dear Goonie, sucks. I had to wait to post until I was sure what I wanted to say. It sucks. You are not alone, sweetie.
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kayb - did your vision deteriorate suddenly? i hope you get good news. Thinking of you.
barbe - as far as radiation, I think I am forever fearful of it as I had a clavicle X-ray a few years before BC and on the same side as BC. Right after my dx, I saw an article on the brca2 gene with a diagram demonstrating one example of how the only good copy of the brac2 gene I have (it's a tumor suppressor gene) could be destroyed and they used Xray-----> cell as the catalyst! I'm of the school why add fuel to the fire. In any case, I often have symptoms that come for a few days to even weeks, then they just go away. Shortly after chemo I had horrible back pain and my MO sent me for a full spine MRI. Nothing was found and it lasted for months. My theory, I had neuropathy in nearly every part of my body from Taxol (still have in feet).
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I need some input. My PET/CT shows nodules in my lungs and several lymphnodes in my neck and chest. I just finished treatment so it seems this doesn't bode well for me. Has this happened to anyone, good or bad? Am I Stage31/2 now...lol! I have more tests in September. My Onc just gives me her somber face
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I personally have had nodes light up but have been told it's a reaction to treatment and they will settle down. Do you have a scan booked for 3 months or so?
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Thanks Barb. I have a scan in September. I am hoping for infection or something else. The SUV was 4.9 or higher on the nodes. One nodule in my lung was spiculated. Disturbing but I still have hope. This all happened in one year and during treatment so I am concerned. Thank you for your help! I see you just had a recent shock! I am so sorry for your bad news! You are so gracious to come here and help us
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Thanks Fraidy, yep the other shoe fell recently.
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Hi Barbe, I see we are sisters in birth year. I am November of 1958.
I am unfamiliar with papillary breast cancer, and will look it up for info.I too am sorry you had a recurrence. Forgive me, but your info has confused me a little. Have you had a local recurrence of papillary form in the other breast?
Have you had further spread than the local recurrence? I know it says stage 4, but when you look at the notes, (I hope!!) it is a local recurrence only?
I'm posting to update a little on my rib pain saga.
I had an xray done through my chiropractor, whom I was way overdue to see. She has xrays done every few years anyway, as a check on how your spine is looking, so we got rib views looked at as well.
Today, I received the report.
No evidence of right sided rib fracture.
9 x 4mm oval shaped opacity is seen in projection of the left scapula/left third anterior rib, only visualised on the frontal view. On the right rib x-ray and lateral view this opacity is not clearly visualised within the scapula or ribs and therefore might be located within the left lung or anteroposterior chest wall.
If this lesion is new, further work up with ct chest recommended.
Well, I spent an hour looking up wording, and checking all my previous ct, xray and bone scan notes.
Nothing mentioned about a nodule in them, soooo...I will book an appt tomorrow with surgeon(overdue for checkup..)ask for ?? As rib pain is still bad, I guess ct of chest wall, and bone scan?
astrid0 -
I had a chest wall recurrence as both my breasts are gone. Papillary Carcinoma is less than 2% of all breast cancers. VERY rare. So when my recurrence came up the same cancer, they knew for sure it was a recurrence and not a new cancer.
Keep us posted on your ribs, Astrid!
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Thanks so much ,I will Barb.
That is so different to how we call it here.
i have had two recurrences..one in my left breast post mast. in 2002, and then one in my right post mast. in 2012. I didn't realise that was called chest wall ..but maybe because I had skin sparing double mast. in 2002, it wasn't dx'd that way? It wasn't even called stage 3 for local recurrence, neverlone stage 4!
i thought stage 4 was only for distant mets like to the bones or organs.
Anyway, at the moment I'm just hoping my pain is no biggie!
i see my surgeon on Tuesday.astrid0 -
Astrid, I also have node involvement in my neck/upper clavicle and left axilla.
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My MO sent me for an MRI on my left shoulder last week. I have been having intense pain especially at night. The MRI report states that the humerus scapula and clavicle bone show some infiltration that is consistent with metastasis. I went for a pet scan/ct which showed no uptake on or around that area. I am so confused !! My MO has ordered a bone scan just to verify! Has anyone had a negative pet scan yet something shows up on the MRI ? I am waiting for the bone scan to be scheduled. A little bit of history I went through my initial treatment for IDC in April 2015 only to have a reoccurrence in my supraclavicular lymph node's (just at the collarbone) in April 2016. I have since completed AC and I'm preparing for 12 weeks of taxol. Any insight would be great!!!!
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Hi Daczahow,
I soo hope the PET is right, and the MRI wrong. How awful to have to wait!
you have done everything right with treatment, yet still you had that supraclavicular node show up.Rotten luck. Let's hope it's arthritic stuff showing and not mets eh? Sorry no experience of this to offer, but just wanted to send love and prayers your way.
astrid0
