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I had no trouble getting my insurance to pay for my first PET/CT after my BC diagnosis since I'd been having unexplained pleural effusions, and it did show activity in my supraclavical lymph node which was known to be enlarged. It took a lung biopsy to verify that the bc had metastatized there, since other inflammations can cause increased uptake, but the lymph node above the collarbone was unlikely to be anything else. Since then, I've occasionally had trouble getting a PET/CT approved, but your doctor can resubmit it as a "peer-to-peer" request where he (or she) talks to a doctor at the insurance company instead of just handling it at a lower level. This has always worked for me (knock wood
) and is generally faster than just submitting a request for reconsideration, which can take weeks for a reply.Even if the PET/CT shows nothing else, supraclavical lymph node involvement makes it stage IIIc, I think, which gets treated pretty agressively, so it's important to get right on this. I hope your MO can get the insurance company to see reason.
Janet
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Hi Canadagirl,
That sounds awesome on your mum's results. Was really hoping she would get that news. Chrissy is right, pathology doesn't lie. What they tested came back clear for cancer cells and that is gold.
There is often a need for follow-up and debrief sort of. Maybe that is what the onc wants to see you all about. He might suggest a bit of follow up testing to be on the safe side.
But , Yay, finally you have a result from all this worrying. It is a little hard sometimes to relax and believe it's ok. That is normal too, but give it a few days and it will sink in. Congrats to your mum she will be so relieved.
Funny, but it has made me happy today just to know you guys got good news. Internet is amazing isn't it?
Moira
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Thanks Chrissy and Moira! I was happy to hear that it was negative but still worry about what caused the lytic lesions in the first place, especially as she is still having some pain, though not even close to as bad as it was before. We see the onc in the morning so I will be asking him everything that I have wanted to ask from the start, like what was seen on the bone scan and whether or not it backed up what was seen on the CT. I know that lytic lesions are rarely caused by anything other than cancer in my mom's age group so it's hard to feel complete relief until he tells me he is satisfied with all of the testing. But it sure was nice to hear that no cancer was found in the bone samples!
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Canadagirl, good luck with the meeting with the onc.........hopefully you will leave with all your questions answered fully and be able to relax completely.
Love n hugs. Chrissy0 -
Thanks Chrissy
xo0 -
Momine- I sent you a PM. I think Prolia (Xgeva) is a very effective drug- probably even better than bisphosphonates for inhibiting cancer growth in bone. Knowing what I know now, my advice would be, if your onc is recommending it for your specific diagnosis, take it.
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Good luck Canadagirl,
Hope you get the answers to your questions.
Worse case; if it is indeed cancer and it just isn't showing up yet, you can be sure it will sooner or later. That is one outcome that only time will tell. And it is ok for a little time to pass. Treatment is still the same.
But, I'm sure the onc will be reassuring about your mum and the results. It is just very hard to not look up waiting for the sky to fall.
Moira
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Today was biopsy #3 and I am back with a question. The onc had mentioned that with bone mets the treatment would be rads to the lesion on the clavicle bone where my mom is having pain, along with a bone strengthener and hormone or AI and not chemo and that chemo would be if there were progression that meds couldn't take care of. He pointed out that "chemo would be forever". The biopsy today was a repeat of the lymph node biopsy she had before. If there is cancer in a lymph node, would that change treatment? Would medication and rads still be a possibility or would that automatically require chemo?
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Hi Canadagirl,
Your poor mum and you, the questions never stop do they. When you think you have a sort of understanding on it all, up pops something else.
From my experience and what I have read here about others, your onc treatment is standard. Rads to kill the cancer on the spot and reduce pain and hormonals to continue treatment. They are considered the gentler option and do work very effectively. They tend to be a bit slower at reducing tumours but just as effective. Chemo is so much harsher and many onc keep them for when the hormonals stop working or if you have a huge jump in activity and they want a quick shut down of the tumours. Mine did that a couple of years ago when megace stopped working and I had more mets in spine, ribs and hips. Tiny ones but there. Did 6 cycles of xeloda,had complete response and went onto femara, which has continued to work for over a year now.
Once a chemo has been used it often can not be re-used so onc keep them for later when hormonals have done all they can. That is a bit of a simplistic explanation but the general gist of it.
Your mum plan is/was very similar to mine and it does work.
Still, hoping for you guys that you don't need it. How long to they think you will have to wait for this result?
Moira
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I believe we should know by the end of this week or early next week at the latest. They went in deep and got 6 samples from the node instead of the standard 3 that they usually aim for so it should be sufficient to see what they need. I am still praying it's not cancer, but based on what the onc told us the other day I know it's quite a stretch at this point. One can still hope though!
Will keep you posted.
xo
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Canada Girl--to your treatment question....Radiation would be used for pain relief if your mom is found to have metastatic disease. If she doesn't have metasatic disease, the radation wouldn't be justified. (Typically, with someone with early stage breast cancer, radiation is used when the surgeon gets a close margin when doing a lumpectomy/mastectomy. For people with metastatic disease, radiation would be used for pain relief.)
This will sound counterintuitive...if your mom DOES have Stage IV breast cancer, it's the least toxic option first: an antihormonal (typically tamoxifen) or aromatease inhibitor (something like Femara). She would also get a bone booster (xgeva or Zometa). She would stay on this treatment until it stopped working. If she had moderate progression, she would likely move onto to another AI. If her disease was spreading rapidly, it would be on to chemo. Regardless of AI or chemo, she would be on some treatment for life, as all on this board are.
Every three months or so, she would go for follow up scans to see how the treament is working. She would probably see her oncologist every month or every other month for bood work and a basic "How are you doing" appointment.
If your mom does NOT have Stage IV breast cancer....well, that depends. If she has earlier stage breast cancer she might get more "aggressive" treatment. Depends on several factors.
I hope your mom does not have breast cancer, metastatic or otherwise. Some people can do well for a long time with bone-only disease. As my surgeon said, no one dies of bone mets--tho they can be painful. (When cancer spreads to liver, lung, brain, etc. that is a different kettle of fish.) I have bone only disease. Someday, in all likelyhood, my cancer will spread beyond my bones. But for now, it is one day at a time.
Hang in there.
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Thanks EnglishMajor. My mom most likely does have it to her bones, the onc is quite convinced based on her scans. I was clear on the treatment for the most part, but because it might be in a lymph node as well as bone I wondered if that would mean a different route than if it was bone-only.
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Hello out there, I am 44 years old and have a 8 year old daughter, Was diagnosised may 2011 with stage 2 hers 2 invasive breast cancer, Now 2013 January I got the news today it has metostasis to stage 4 and is in my spine and in my liver, I have contacted cancer of America Are there anyone out there that has went to these places? I am affaid of they are just for marketing and money ? I would love to hear stories good or bad before its too late for me? even my doctor told me he could not help me anymore!! So I live in Oregon and am looking for a doctor that exsperiance with Metostasis??
PS: He said the Tamofen well it did not work for me so he said no sence in taking it
Angela
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Angela it is good that you get another dr. what does he mean he can't help you anymore, what kind of dr....come to the stage 4 site....I am so sorry!!
Sandy
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Angela - I agree with blondie. Any doctor that says he cannot help you is not worth your trying to convince him that he can. Get a 2nd opinion. And yes, come to the stage IV group. Lots of wonderful people there to help you through anything that might come along.
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This is not for me, but a friend at work who is worried sick about her sister in law.. I'm not sure what stage, but I think it was advanced stage 3 about 5 years ago. She has problems with her heart and lungs now, supposedly from chemo and rads. Has breathing problems. Now she is being told from a cat scan that she has mets in her lungs and bones (spine). No biopsy done, told they can't do it due to her breathing problems. Can they determine 100% that spots are mets without biopsy? I told them to go to a big cancer hopital, not the small place she goes to now..Thanks in advance for any info.
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Without a biopsy, one can't be 100% certain about those spots. If she can't have a biopsy, they'll monitor her quite closely to see if the spots change. One can have spots in the lung that aren't cancer, and spots in the bone that are arthritis. What might be pointing to a metastatic diagnosis is that she has both.
She should try to get the best care she can, so going to a bigger hospital would be a wise idea.
Take care,
Jennifer
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Angela, I noticed in your signature you are HER2+. Have you been on Herceptin at all. That has been very effective for HER2+ breast cancers.
Cancer treatment Centers of America have a good reputation though I have not been to them. There are other major cancer centers throughout the US. I'm sorry I don't know about Oregon but surely someone for that area can make a recommendation. I used MD Anderson in Houston Tx. They are among the best.
I hope you find good care quickly and please do post in the Stage IV forum and introduce yourself. We will help you with whatever we do know.0 -
Angela,
I second the motion from Chickadee. There are some very effective regimins for HER2+ as well as a number of AI's for ER+ if you are post-menopausal, or you can have your ovaries removed or shut down if you're not.
It does seem that Cancer Treatment Centers of America does a lot of advertising, but they do publish survivor data that looks better than average. This may be because they are selective about what insurance thay accept, so that they eliminate people who have not had high-quality health care and that improves their statistics. I did hear a speaker from CTCA at an ACS event, and she seemd very well-informed and open-minded.
You might want to consider NCI-designated cancer centers (National Cancer Institute), which include MD Anderson and Memorial Sloan-Kettering where I went for a second opinion. http://cancercenters.cancer.gov/cancer_centers/index.html
There is one in Oregon:
Oregon Health & Science University
Brian J. Druker, M.D.
Director
3181 S.W. Sam Jackson Park Rd., CR145
Portland, Oregon 97239-3098
Tel: (503) 494-1617
Fax: (503) 494-7086Good luck! I fired my first set of doctors and foundmuch better treatment and support elsewhere.
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As far as where to go, I have always favored University Hospitals. They are teaching hospitals, so in my thinking anyway, they have to know the newest stuff and keep on top of new treatments, studies and all that.
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Thank you for the replys.
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I don't know if I should post my question here, but here goes: I just have gotten first blood work and i have high bilirubin levels. I'm newly diagnosed. I have 2.0. Normal range is up to 1.0. Could someone let me know what this could mean to me. Does it mean something is wrong with me? I have always had a little anemia off and on. Also my platelets are normal but the very lowest normal and I have insufficient vitamin d. I wish i knew what this means. Thank you.
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Hi everybody....I have become so close with someone here who reached out to me when I needed. Lot of emotional help. She has become more than a friend....she's like a sister
now, which is great as I don't have any. She lives an ocean away but we correspond
daily with the odd phone calls. She's my soulmate....I love her so much. Yesterday,
I got the bad news she has just been dx with mets to the lungs. I correspond daily....
I need suggestions to keep saying the right things to her without too many cliches.
Also, if anyone would share your treatment experiences regarding lung mets.....I want to try and keep on top of all of this, which will help me to better support her.
I wrote an article on the Canadian connection about paying it forward.....I hope I can do this for my new found sister....I have such mixed emotions today....I vasilate between
sadness and anger....just want to be there for her...thank you in advance for any help you can give me.0 -
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Scottiee1,
Not all lung mets are alike. I have "pleural thickening" with lots of small nodules and had pleural effusions 8 months before I was finally diagnosed with bc and they were biopsied to show metastasis. They have become much less active with arimidex (I'm ER+) but they still show up on every PET/CT. I'm no longer accumulating fluid. My pleura adhered to the lung on its own, but there is a procedure that can produce the same result - pleurodesis. Some people have a single lung tumor that can sometimes be surgically removed to good effect, but mine are considered inoperable. I'm doing well almost 2 years after dx and 30 months after I should have been. Even if the lung issue is under control, there are still circulating tumor cells that could land elsewhere, so it's important to keep up with treatment and I think diet and exercise have improved things for me, as well. There are some stage 4 ladies with lung mets on the over five years since dx list, so tell your friend to hang in there and see what her mo suggests.
Janet
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Thank you carp diem for your response .....she has multiple pulmonary metastasis
.....many nodules measuring from 5-7 mm....that's all we know at the moment. he will
see her oncologist tomorrow for a course of treatment and further explanations.
Thank you again for the information.0 -
Had my PET/CT 1/21/13. Nurse called today. Doc wants to watch this. Impression: There are two lymph nodes within the retrocaval region which are not pathological in size (1cm or less in size is what was reported) by criteria although they are mildly hypermetabolic. Repeat PET recommended in 3-6 months. A developing metastatic or neoplastic process could not be excluded.
What in the hell does that mean? Google has not been a lot of help. Should I request a sooner, different scan for followup? HELP!
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Hi wrsmith2x,
I'm not sure but it would seem that there is a little something there but too small to be able to identify what exactly they might be. Modern science can do lots of wonderful things but somethings are too small to show more than a "maybe". Waiting the 3 or so months will tell them if they grow anymore or disappear or remain the same. Getting anything sooner might only produce the same results. Worst case and in 3 months they do show up as something nasty the delay will not have effected the outcome. Treatment will be the same and will work the same. Lymp nodes can swell for other reasons and hard as it is a "wait and see" attitude is not wrong.
Maybe someone might have a different idea but I don't think right now there is another test that would show anything. Horrible as the waiting for the time to pass is, you must remember it very well might not be mets. treat it as a "pass" and unless you develop anything that concerns you get on with enjoying the next three months. Try really hard not to let it worry you and steal the next few months from you.
Moira
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As far as I can tell, these lymph nodes are in the abdomen and are not generally connected with breast cancer.
See http://bjr.birjournals.org/content/80/958/841.full.pdf Figure 18. CT image of the abdomen demonstrates the following nodal stations: lateral aortic (light blue); retrocaval (green); lateral caval (pink); pre-aortic (red); pre-caval (dark blue).
Since your signature shows no lymph node involvement in the more typical spots, these are less likely to be metastases from the breast cancer, but I think they are saying they can't rule it out, or it may be an unrelated cancer. Some sort of inflammation could have the same characteristics, and while waiting is hard, repeating the PET/CT in three months or so could clarify the situation. If you have further symptoms you should get need immediate attention. Given their location and size it would be challenging to biopsy them and waiting might make that unnecessary.
Janet
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Scottie1
A lady recently posted a question on the Stage 4 boards about what she should say and do for her best friend. There were heaps of great responses that might help you.
It was called something like "what would you like from me?" I will post a comment on that thread so it jumps up to the top and hopefully you can find it.
All the best to you and your friend.
Angela0
