If you are not Stage IV but have questions, you may post here
Comments
-
Lories,
How are you? I read your post and was wondering about you.
JCP
0 -
Piggy99
How are you and your daughter doing?
I saw you answered another lung question for someone so I wanted to see if you know anything, perhaps, about my situation. I was dx in 2005 with IDC see below for details and a couple of months ago I was having trouble with my asthma and allergies so I finally went to an allergy/asthma specialist. They did a standard chest xray which hadn't been done since late 2013, and calcification area showed up on left side in hilar region where the blood vessels, lymph nodes, and lungs all come together. I am so afraid. They cannot tell if the node is full of calcification which would be a good thing (a scar) or if it had a pattern on it (bad). They also don't know if it has to do with the blood vessels. She may have mentioned the word lymph node but it was an online visit and I couldn't take it all in b/c I was naturally a little upset Do you know what lung mets usually show, or if this could be a primary to lungs? Thank you for all of your time, even if you cannot help with it.
SIncerely,
JCP
I was dx Sept 2005 w/ IDC Stage 1 Grade 2 o nodes
rt lumpectomy, chemo AC, rads 6 wks
Tomoxafin, Femara together one at a time for total of 10 and a half years.
0 -
I have a hard lump behind each of my ears. I think it could be lymph nodes. I don't feel sick or have any infection going that I know of. Has anyone had this and it was nothing?
0 -
I would get it checked by your Onco. There are lymph nodes there and if swollen always better to check if they last more than 2 weeks. Good luck. Praying its nothing.
0 -
Since diagnosis, I found myself very observant of my body/pain. My MO said 2 years after chemo is when he expect things will come up, if they will come up. I’m a year and a half past chemo.. every pain I feel my mind goes to the dark side. With Anastrozole, aches and pain are part of the package, so there’s constant battle with paranoia.
Im having new bone pain and recent bIood shows my calcium is borderline high, all blood works and markers are normal except for the Calcium. My MO is not concerned, she ordered a ct scan but told me not urgent, to do it anytime before I see her in December.
Could you please share your story/symptoms that led you to confirm MBC - is it pain, abnormal blood works, routine scan, or combination?
0 -
Hi, I am more than 5 years out from TNBC chemo and bilateral mastectomy. Two months ago I began to experience both bone pain and muscle cramps in my legs. Now it is primarily bone pain. It wakes me in the night several times and I have difficulty getting back to sleep. I have not injured myself. I have tried high quality mineral supplements (e.g., magnesiums) and it is only getting worse. I'm beginning to get depressed from the pain and the insomnia.
Do you think I should contact my oncologist to rule out bone metastases? (PS, I moved to a small town in NC 5 years ago and have yet to find a good primary care doc).
0 -
I think any symptom that is severe enough to be keeping you up at night for this length of time should be brought to the Dr for assessment and diagnosis.
Best wishes
0 -
I’m with moth! See a doctor / mo for evaluation!
Good luck.
0 -
Get it checked out - IF it is mets you want that dealt with BEFORE you have a fracture or other problem that requires more extensive intervention.
0 -
I definitely agree to get it checked. You'll "feel" better either way. If you contact your oncologist, rather than your PCP, he/she might be more likely to order the appropriate tests (nuclear med bone scan, MRI, etc.) to see what is going on.
Let us know. We're here for each other.
0 -
Hello Ladies!
First I would like to state that I am going through all of my old test results to get them in one place in case of an emergency which is how I came across this info
I was diagnosed with IDC in August 2018 and the PET scan showed uptake at the cancer area and uptake in deep right aspect of sternum. My ON said he was not going to worry over that Because my treatment was not going to change and maybe it was just inflammation. This scan did not even show up the 10mm mass in my lymph node that we found out about after surgery. I had my chemo, Rads , and Tamoxifen. I guess I am just a bit confused and aggravatedbecause on 6/28/18 I had a CT of the chest to check on a small lung module they found the year before which was shown as stable. However, the radiologist mentioned a soft tissue mass in anterior of mediastinal.
I know it is kind of late to worry about this, but I am becoming frustrated with my MO. He states he does not do PET scans on breast cancer patients. Then he moved me out to six month check ups when I am not even a year out from treatment. This after stating at first he was going to keep a close eye on me for the next couple of years due to age and BRCA. I am just beginning to question my past treatment and future with this MO
So after going completely in a circle..........Could this soft tissue mass have caused the PET scan to light up and if so what could it be?
0 -
Hey everyone quick question here. I have had enlarged Axillary nodes with compressed Hilums for over 6 months now and I am meeting with a surgical oncologist tomorrow morning. Recently this week I have had a lot of upper abdominal pain and fullness . Urgent care did a CT scan which showed moderate fluid in the stomach and thickening of the gastric antrum. Has anyone had this and it was Mets ? Thanks for your replies !
0 -
Bookworm,
I would look for another MO if you don't have confidence in him. I saw mine every three months after my initial dx and treatment, then it went to every 6 months after a year.
0 -
I am seriously thinking about changing. He did not want to follow standard protocol because of my younger age and BRCA...now he is changing that. So weird.
0 -
Hi Bookworm,
While I would agree that you should change if you are not comfortable I did want to reassure you in terms of six month appointments and PET scans. I was diagnosed initially at 38 and once I was done with chemo I only saw my oncologist at six months or more (went to annually then stopped After a couple of years). I also saw my RO annually but that was because I was part of a clinical trial.
I have never had a PET. While it’s more widely available here now my MO still prefers CT scans.
0 -
I'm sure this gets asked repeatedly, so my apologies in advance. For someone like me (TNBC stage 1B) and in the absence of symptoms, my care team uses minimal tests and scans during follow-up care. That means no MRI, PET, or CT, no blood tests for tumor markers, etc. That's fine. I prefer a minimal approach. But it leaves me wondering what symptoms someone might have of mets, which would lead to more testing? And for reference, TNBC mets is more likely in soft tissue (organs) than in bone. What would I even pay attention to?
Thanks for any insight.
0 -
Well, for liver, I had occasional upper right quadrant pain and flank pain. If anyone (like my doctor at the time!) had pressed on the area under my ribs, it would have hurt.
0 -
I'm tnbc
my primary symptom was cough that didn't go away; but it was winter and everyone had a lingering cough...after 8 weeks tho my gp sent me for a chest xray and the rest is history. I had a very large lung met.
Tenderness below right ribs. I have an above the counter bowl sink and used to lean on it to get close to the mirror to apply make up as I'm really near sighted. I remember having to adjust so as not to press the edge of the sink under my right ribs due to discomfort. Those were my liver mets.
Fatigue - wouldn't have seen it as a symptom on its own (I had good reason to be tired as I was in a very intensive degree program) but with the other things it made me concerned
Unexplained weight loss - mine was minor. Didn't gain weight over Xmas, was just slowly losing
0 -
Sadiesservant,
I feel better with that information, so thank you! Any reason your doctor prefers CT over PET
0 -
Hi Bookworm,
I can't say with any certainty why he likes CT. I think, in part, it's a function of access as PET scans were harder to get here until recently. I also feel that CT is a good tool when cancer may be a bit more indolent. Mine seems to be a slow moving beast that doesn't show up well in bone scans and, I suspect, might not show up on PET either. Despite this, he now uses a combination of bone scans and CT to track my disease, bringing out MRI if he is worried about something brewing that he wants a closer look of.
Ultimately, while I agree that we need to be our own advocates I also feel strongly that we need to have some faith in our physicians. Treating this disease is as much art as science and oncologists get a feel for their preferred modality. They see things when others do not and also can avoid blowing some blip out of proportion. Most importantly, at least in Canada, there is no set formula for scanning or follow up unless there is cause for concern.
0 -
PET exposes you to significantly more radiation than CT so that may be another reason to avoid it unless absolutely necessary
0 -
I agree Moth, plus they are more expensive and require radioactive material that has a very short half life. Where I live in regional Australia they can only schedule so many per day as the material has to be transported and can’t be stored for any great length of time.
0 -
Hello,
Could you please help me to understand, when there is a time to do a bone scan? I started Arimidex and Lupron on March. Starting May I have pain on my lower back. On my last appointment (a few days ago) I described its intensity "like 2, but often it strikes like 7". My MO is completely sure it's just a SE from my treatment. He ignores my question why the pain is located in the same spot. What would you do? Wait and watch for 2-3 months, or get a bone scan as soon as possible? I had one done last year, it was normal. I also had lobular cancer that is hard to detect on scans.
And another question. If I am fine to accept risk of radiation exposure, maybe it's better to get CT/bone scan? I am relatively young (39) and carry BRCA2 mutation.
Thank you.
Updated: last year I had CT and bone scans done. I know that lobular is generally slow growing, but somehow last year the palpable part of my former tumor doubled its size over the course of four months.
0 -
MikaMika,
I think the timing of scans is best discussed between you and your MO. Yes, lobular is sneaky, and that's a valid point (I also have lobular). However, it's also generally more slow growing, and perhaps that's why your MO is hesitant to scan. I have no experience with Lupron, but I do have experience with both Tamoxifen and Femara, and they can cause some significant SEs. I had both back pain and pretty severe ankle/foot pain on Femara, and they were both SEs.
You mention both CT and bone scans. They are two different types of tests. If you've had one and not the other, perhaps you could raise that with your MO if the pain continues.
I'd keep on top of it, and if you are that concerned, I'd contact your MO and ask for scanning.
0 -
Hello BevJen,
Thank you so much for your response!
0 -
How will I know if the lesion in my head is malignant or benign if they cannot biopsy. My MO said it's a bad place to biopsy unless they drill a hole in my forehead above my eye. She said they won't biopsy due to risk it might be a hemangioma. I guess I am just not wanting to wait the 3 months to check it for growth. I am not very good at waiting. I am thinking if its mets I could be using my time more wisely like not working 40 hour weeks. I am selfish, impatient, frustrated, most of all, lonely because I suck at being a friend therefore I have none.
0 -
Hi Debbie, I don't really have an answer, but I'm in a similar situation because my Drs found a concerning bone spot that is inaccessible to biopsy. The current plan is to wait three months and then repeat imaging. My spot was found on a PET/CT, do you mind if I ask how yours was found?
I agree that it would be nice to know if I now have MBC from a practical perspective. Does anyone know if there are other ways to assess possible/probable mets when biopsy is not an option?
0 -
anyone have a soft tissue mass show up in superior anterior mediastinum? CT scan mentioned maybe a lymph node and has not changed much from the PET scan last year...the mass was not even recorded on that scan by the radiologist.
0 -
bookworm,
Was your tumour in the lower inner quadrant? I'd keep an eye on it if so but if it hasn't even changed in a year, it sounds like an anatomical variation more than a thing to worry about. But as always bug the doctors for answers if you're concerned
0 -
Talk to your Oncologist and primary about Bone scan. My oncologist ordered when AI Rx'd to get baseline sincec AI known to thin bones. I don't know how they differentiate between "regular" bone loss from aging and accelerated from AI. Statistics? Risks from radiation? Is it an appropriate tool for monitoring or should it be limited to 1/2yrs or longer?
0
