If you are not Stage IV but have questions, you may post here
Comments
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I had posted my mom's question about the shoulder and back pain she was having which we were concerned was progression. Now the pain has also moved to the other shoulder. Her back pain is easing up, her right shoulder started hurting for no apparant reason a week ago the morning after her Aredia infusion and now her left shoulder is in severe pain as well. From what we know she doesn't--or at least didn't have mets in the shoulder joint on the right or left (only on right clavicle). Could Aredia or even her Aromasin be responsible for such severe shoulder pain? Last week was her 5th Aredia infusion and she has been on Aromasin for just over 5 months as well.
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I'm not on AI's anymore but they definitely contributed to random joint and back pain that weren't mets. Blocking estrogen causes much aggravation to your body. Your mom should call her Dr for some pain management until the scans tell the story.
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My mom just confided in me that she has been feeling flu like symptoms every night and has had a fever by the end of every day since the pain started. I checked it for her just a few minutes ago and its 101.2
Last week was her 5th Aredia infusion and her flu-like symptoms after the infusion have gotten better with each one and the fever and achiness never lasted more than day or two so we're not sure why it would cause such a reaction only now...if that's the reason for it. I think I have finally convinced her to call the onc tomorrow about the pain and fever.
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Hi there. I am here on behalf of my mother who isn't very computer orientated. She was diagnosed with ILC, stage 1, grade 1 in February this year and had a wide excision and radiation which finished today. During the last few months she has had increasing headaches, they did a cat scan a few weeks ago and idenitified a 16mm meningioma in her front lobe. Last week she had a MRI with contrast to determine more information about it and today we recieved the awful news that the MRI also discovered 2 tiny enhancing medial parietal lobe cerebral lesions suspicious for tiny cerebral metastases. Because there had been no evidence of spread in her SNB the scans were reviewed again and by radiologist/neuro specialist and a meeting was held yesterday to discuss the case, we were told today they are highly convinced that these are a spread of the breast cancer.
Obviously this was really upsetting for mum (and us) - but it appears that other than a follow up MRI to check on progress of them there isn't any kind of "plan" at the moment in terms of treatment. The onc said they're too small to be causing any problems at the moment so they are going to monitor them. Should we be pushing for something else? Some other form of action? Any advise would be much appericated.
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Hi Evltre. I'm very sorry to hear about your mom. Was she receiving any treatment after her original diagnosis? Was her tumour + or - for ER, PR and HER2?
I am not an expert but if I were in your mom's position I would firstly get a copy of the radiology reports and see what you can make of them in terms of the likelihood of mets.
I'm not sure why the onc is not being more proactive. I would get a second opinion and maybe even a third as this is a very serious situation.0 -
Hi Racy Thanks for the reply. She has just finished Radiation for the original cancer. It was invasive lobular, very small and low grade. We actually are still waiting on the er/pr stuff, although the oncologist said it was highly unlikely to be HER+.
We were supposed to get the radiology report last week, however it was delayed because the oncologist wanted to meet with the neurologist and radiologist to discuss the findings that there were metastatic spots on the brain - the radiologist is adamant it is. I have a copy of the report here, which actually says very little other than "2 tiny enhancing cerebral lesions, one within the medial left parietal lobe and one within the medial right parietal lobe measuring up to 2 mm in diameter" and that they appear to be celebral metastasis. Other than that it talks mainly about the meningioma. The oncologist told me on the phone the radiologist said there was not much else it could be and that he was as shocked as we were that it had spread to the brain.
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I am no expert but the medics acted fast when my mums brain metastasis was found, but maybe because she is HER2. But to not act at all seems unsettling to me since prognosis for brain mets is often bad. Least that's what google told me since our shocking news 5 months ago.
And wouldn't we rather zap them while they are small? Maybe it is too soon for radiotherapy after your mums previous treatment. . I do tend to trust medics to know what they are doing though..maybe ask them to explain it to you? To settle your mind.
Best of luck x0 -
yes I feel the same - like there should be some urgency. But the oncologist said today that they are "so small" and not symptomatic (found as a result of the meningioma dx) that they felt it was best to wait and see. Doesn't quite sit right with me to be honest and I was hoping that I might find some more info here.
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Gosh Evitre I am so sorry that youand your mom are going thru this. I was going to posta brain met question as well but I just had to tell you that Im praying for you and your mom.
I was curious about brain mets as far as did anybody have the symptom of headaches before diagnosis or was it a certain spot on your head that hurt. Generalised pain versus specific site pain? Thanks for any help.0 -
hi Mel - thanks for your kind thoughts. With regards to mum's brain tumours - she had been having issues around the meningioma - pressure headaches in the front right of her head and feeling of pressure. The actual brain mets themselves are too small at this stage to be likely responsible for any issues
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I don't have brain mets. But, from what I have read here, it seems that if Evitre's moms lesions are that small, a limited watch and wait period wouldn't be out of line. No more than three months though, even if her original pathology was low grade (which is why I'm guessing the medical team is taking a more leisurely approach).
As to wondering about symptoms before diagnosis, I asked the same question of my Onc as I have a spot on my skull that aches. He said that you wouldn't be able to "feel" a brain met as the brain has no nerve endings. You would tell it was there from symptoms like headaches, dizziness, a stroke event, etc. If you feel a painful spot on your head, it might be a skull met, which would be a subset of bone metastasis, and diagnosed with a scan to be sure. In my case, I had a small skull injury as child that the chemo and treatment has caused to become sore.
Any pain that persists for two weeks, even if it comes and goes, should be discussed with your dcotor.
Jennifer
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Evltre, it sounds like the onc is not convinced that the lesions are brain mets.
I say again that I would get an opinion from another onc.0 -
Hello Chrissy and Barsco
You were very kind to me a few weeks ago when I was very worried about the outcome of an eye and brain MRI.
I saw my ophthalmologists at the hospital today and the results are mixed.
On the bright side, there is nothing wrong with my brain.
It's a good lesson in taking the views of a technician - rather than a radiologist - with a pinch of salt. The technician really shouldn't have said anything about what he thought he could see on my eye and brain scan....
On the other hand, the young ophthalmologist said that the radiologist thinks I may have a benign tumour - possibly a hemangioma or epitheliod eye cyst attached to the lacrimal gland.
This was a bit of a shock as I was expecting to be told it was a benign cyst.
The experienced ophthalmologist told me that he will do a biopsy of the tumour. I said I would prefer to have it removed but he said he would have to remove the lacrimal gland and he did not want to do that if it was not necessary.
If the tumour is benign, he's thinking he will leave it where it is. If it's malignant, we will talk again.
Feeling a bit fed up about all this but will get through it.
Best wishes
Alice
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Hi Alice.....that sure is a mixed bag result. I'm glad that the ophthalmologist is thinking benign as that is the good news side of things but a bit of a bummer that he wants and needs to biopsy to make sure.
It is a right pain that we need to go through a long process to get confirmed answers on just about everything but much better that than be left in limbo worrying ourselves silly when it's not necessary.
Hoping the biopsy goes well and you do get the benign confirmation result.
Love n hugs. Chrissy0 -
Alice - I agree that it is frustrating at times to have to go through so much to get an answer. But it is best to be sure as to what is going on. Hoping to hear from you next that the biopsy confirmed benign. Keep us posted. xo
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Even though I got good news a few weeks ago, that pet scan showed no abnormalities. ( they were convinced there were bone mets to the left arm and lower right spine) onc wants to repeat all those scans in 4 months! Seriously? Is that what the rest of my life will be like???
Paula0 -
Paula I know it feels like you spend more time at the docs or having tests and scans than you do doing anything else and it can get a bit frustrating, but it is much better to have a team being vigilant than one that doesn't care.
Having those scans repeated in four months is pretty standard if something is suspected but not proven. Hang in there and try not to worry about something that's not proven......enjoy your days to the fullest.
Love n hugs. Chrissy
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Can an onc tell if you are NED by tumor markers? Mine told me last week I was NED, but no pet scan. In may and June my tumor markers were up in my liver and pancreas. He sent me for a barium cat scan on my pelvic area due to the fact that I am brac2+. Then 2 weeks ago I had a bone density scan. I have osteopenia. My bones ache a lot. I am only 45.
My question is, without a full body cat scan or pet scan can one be NED by tumor markers?0 -
My tumor markers have never changed. They have been the same from my first Dx til now. So when I had the orignal toumor and very clear bone mets, during a mast, chemo and rads, last scan came back NED, markers never changed. For some people they can be used to tell some things, but I don't think I would rely on just that to determine NED.
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Thank you stormynyte:)
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My friend Cecile has to stop Xeloda because it's not working anymore.. her stomach is distened and will be starting intravenous bravgemp gemcitabine and cisplatin tomorrow.. has anyone had this treatment? I have searched for anything on this treatment on this site and have come up empty handed. Is there another name for it?
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Hi Jan, the gemcitabine is also known as Gemzar. I have had no experience with either of these chemos but I do know that the combination and alone they have been used by quite a few ladies. Maybe if you search Gemzar you will get a better result.
Hope the new combo does good things for your friends.
Love n hugs. Chrissy0 -
Cisplatin is a platinum drug similar to carboplatin. When I asked the mods why it is not listed on their bc chemos page, they explained that it is not FDA approved for bc (only for other cancers) even though drs prescribe it for bc. There are definitely people on bco who are on cisplatin. You should be able to find them using the Search menu.
Hope this helps0 -
I have found results for the Cisplatin and Gemzar.. thank you crissyb and Latte!! My friend had the chemo today and because she was throwing up so much (since last night) her Onc. sent her for an ultra sound and there she had 4 litres of fluid removed from her abdomen!! She is feeling soooooo much better!!
I am kind of choked with her Onc. for waiting so long to remove the fluid, it took a month from when she first mentioned it to him. Grrrrrrrrr!! Thanks for listening to me vent! I'll go see what I can find out for her on the Cisplatin and Gemzar now 0 -
Sorry to jump in and go a bit off topic, but has anyone heard from ShelMel or KeepingFaith69? They were both diagnosed around the same time that I began coming here and they've both been quiet for some time. I had some contact with both when we all first started coming to the Stage IV threads and have been wondering how they are.
Hope they're just taking a break from the boards! I didn't want to ask in the Stage IV thread and thought i would post here.
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Hi Canadagirl, Shelmel last posted on March 7th and Keepingfaith69 on May 27th. Here's hoping they are just taking a break as Shelmels last post was on LukeandJessiesmom's death notice and Keepingfaith's was on the 'ER/PR-Her+ with liver mets' thread.
Hope your mom is doing well with her treatments.
Love n hugs. Chrissy0 -
Hello,
i am posting because my mom was diagnosed with breast cancer. I am wondering, specifically if a liver tumor mets could be present causing weightloss for 3 years and still remain undiagnosed? The reason I ask is because my mom lost about 30 pounds 3 years ago (possibly a little more gradual over 3 years). She was maintaining a vigorous exercise routine and diet. She had been told she was in the top percent of normal bmi for weight 3 years ago and now she is on the lower scale of normal bmi. still normal though.most of the time she thinks it is her exercise, other times she worries becuase the pounds were able to come off in the first place.
i am just wondering if it is possible for a liver tumor to be present for that long (3 years) and not progress? i assume if it had gone to her liver it would have been a very aggressive breast cancer to go there immediately and therefore, wouldn't it have progressed by now?
Also, have you ever heard of a breast tumor metastasizing right away? As in someone could have a tiny tumor like my moms but still having mets at time of diagnosis with no LVI or lymph nodes?
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canadagirl, I was just thinking of Shel today and was going to send her a message. Hope all is going well for both.
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Hi Lacey, if your mom has been having her regular checkups I doubt very much that her 30lb weight loss over three years would be anything other than the result of her strict diet and exercise routine.
At the time your mom was first dx'd she would have had a whole lot of tests that would have told her if her cancer had metastisised or not and definitely would have been told.
I know you are worrying because you love your mom but my suggestion for you is just get on with your life as I'm sure your mom is very aware of what she needs to do.
Hoping you have many years together with no recurrence.
Love n hugs. Chrissy0
