If you are not Stage IV but have questions, you may post here
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4love, our greatest dream is that a cure is found, not just for breast cancer but for all cancers.
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Dear beautiful stage IV gals,
First things first, love, hugs and more love and hugs to all of you.
I hope you don't mind me asking a question but I was taught when I first got sober to ask questions to the people who have the experience, strength and hope in the area I need help in.
Hence why I am here--I need your experience, strength and hope.
I was diagnosed with stage I IDC on 7-1-2015 and had lumpectomy and intraoperative radiotherapy on 8-25-2015. My breast surgeon stated that the 1 cm margins and lymph nodes are clean.
My tumor is ER+/PR+/HER2-.
I see the medical oncologist this Tuesday, 9-8-2015 and was told that I'll likely be prescribed AIs as I am post-menopausal.
Did you take AIs and/or Tamoxifen? Did you start them, then stop them? If you took them, do you think they helped? If you didn't, do you regret not taking them?
I'm really scared of the side effects--did you have any? Were they intolerable or manageable?
If one could unwind the clock to when you had your first appointment with the medical oncologist and given your first prescription for AIs or Tamoxifen, is there anything you would do differently if you could?
Thank you immensely,
radgal
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4love-
Your doc suggested skipping chemo but I assume he has you on either Tamoxifen or an aromatase inhibitor. They are very strong medicine, even if they are just oral pills. Be very conscientious about taking them, and they can keep cancer at bay. Many women even at stage 4 are just taking aromatase inhibitors and it's working for them.
Also, since you are two years out, I would ask for a PET or at least a bone scan. They don't normally do it and you will have to push, but I think a scan every couple of years is the best way to have peace of mind. (You may have to invent some bone pain in order for them to get insurance to approve it.)
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Hello all. I have a question that I hope someone may be knowledgeable about. I found new lump in the opposite breast than the original cancer, and had an ultrasound with a BIRADS 5. Will do a biopsy as time permits, however, it is not a good time right now. The rad. said she was 99.9 % sure it is cancer. Ok. I had my CA 27-29 drawn and it was 665. So, it is really a no brainer. I asked for a PET scan and that is awaiting approval. My MO is on vacation until next week and I have an appt already scheduled for the 21st. However, my liver enzymes were ALP- 554 ALT-162 AST-114 ( all 4-5X above normal) Lymphocytes 19 (below normal), all the rest is normal. I have had extreme abd discomfort with eating for 2-3 weeks, but that is not too unusual as I have had problems since chemo. Dr Google has not been much help. Has anyone else had anything like this happen? I have not found much on other sites in regards to liver enzymes and liver mets, where you immediately transport to! Any insight would be appreciated, thank you.
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hi,
So sorry for your new concerns. I do not have a similar situation as my mets are. in the bones. I just wanted to say (possibly obvious to you, if so I apologize), biopsies not only confirm cancer but type of cancer. So this could be different in regards to er/pr and her 2 status than your original cancer. If it is a met or a new cancer. Besyt of luck to you
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moni, your CA27-29 would be my biggest concern. The increases in liver function might possibly be attributed to meds (even OTC meds), and if you've always had tummy issues, then that's not the best indicator of a new problem either. But your CA27-29 is extremely high, and unless it's a strange and rare anomoly, it absolutely merits a PET scan if your insurance company will approve it (often a challenge these days), or a CT scan if it won't.
I'm so sorry you're going through this, but getting a proper dx -- whether this is a contralateral bc in your alternate breast or something else going on -- seems like it should be of the highest importance, so that you can get on whatever meds are needed ASAP. Hugs, Deanna
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Thank you for the replies! Yes, I will do the biopsy to determine the flavor, but it will have to wait. I am not on any meds currently, so I can eleminate that. I do not even drink, ever, never have. Yes, I will wait a couple more days and call the insurance.
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Hi moni I can't help you with your question but I can encourage you and wish you well. I had a fright this week myself which according to Dr Google was a cancer back above my implant which caused me a week of panic attacks and anxiety so I would suggest you stay away from google until you get some results one way or another. My outcome today was good so I hope yours is favourable as well judy x
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Thanks Judy. I saw my PCP yesterday for some RUQ pain that has progressively gotten worse that I was attempting to ignore, but when I got my liver enzymes results that were 4-5X high, figured I better say something. She was very sympathetic and just kept saying she was sorry. But she said she will expedite the PET and she wants a CT also. She said she would call me today. Hopefully get something done soon.
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I was wondering how many of you had a rise in tumor markers when receiving your stage 4 dx. I have been dx with lung cancer and the biopsy doesn't say for sure if it is lung cancer primary or breast cancer met. So Dr tested my tumor markers which were normal and decided it was a rare lung cancer. I only have one tumor in the top right lung. Would there be more tumors if it was lung cancer
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icey, I'm so sorry about your new cancer. Yes, I had a significant rise in my CA27-29 when I was re-dx'd, but I also had extensive bone mets. Plus, tumor markers are known to be inaccurate for some people.
It seems to me that it would be very important to get the dx correct for whatever this is. Is it absolutely something new they're seeing? And why do they say it's malignant? I'm asking that because it's not uncommon for things to show up on our lungs that may look suspicious, but that are actually damage or artifacts from previous illnesses, such as pneumonia. Suzanne Somers wrote about her experience being dx'd with lung mets that turned out to be valley fever, and a friend of mine here in CA just had a similar scare that turned out to be some sort of infection vs. lung cancer.
From what you've told us so far, I would absolutely seek a second opinion before having any tx. Just my opinion... (((Hugs))) Deanna
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thanks din824 for your reply. I had a biopsy that says it is malignant!! They tested for ck7 and ck20. Cl 7 was positive and ck20 was negative. These results were common for breast cancer and lung cancer. So that is why he tested my tumor markers!! He referred me to a surgeon but I preferred to choose my own. He did say he thought it was a rare type of neuroeendrocrine lung cancer. It isn't you normal lung cancer. That might be why it is 3 cm and not spread anywhere. Doesn't breast cancer 9 times out of 10 spread to bones first
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Sorry, icey, I didn't realize you'd already had a biopsy, and I was hoping perhaps your onc was getting ahead of things by saying it was absolutely a malignancy.
As far as bc metastasizing first to bones, I think that's very often the case, although I've never read a stat on it. But we're all so different, I wouldn't assume that it couldn't go to the lung first, because sometimes it does.
So the biopsy wasn't absolutely conclusive re. what type of cancer cells they are?
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The biopsy says neoplastic infiltrate without definite glandular or kerrin formation!! What ever that means
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So I have a question. I'm three years out from my first diagnosis. I had a breast MRI done recently just as a precaution since my first diagnosis was under my right armpit and extremely hard to get with a regular mammogram. I get a call this morning saying that they see something irregular in my left breast and want to do an ultrasound AND they also saw something in my lungs and my onc has ordered a chest CT. Should I be worried about either one of these things? I keep trying to tell myself that it's nothing and everything will be fine, but....well you all know where my head is going. Someone please tell me they've been where I am and it was nothing.
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Hi Sonya, sorry my dear, none if us are medicos and have not read your scan. We do however know exactly what your head is doing and where its going.
The best thing I can say is its possible that the something they have seen is just scar tissue of some sort. If its not, and there is still that possibilty that we are all afraid of, then remember this........one day at a time, one step at a time.
Don't allow your head to have you dead and buried before you know all results of all tests. There is still a lot of life to be lived even at stage IV. Right now I am in Paris France on my dream holiday and doing heaps of things I never thought were possible.
Keeping everything crossed that your results bring good news.
Love n hugs. Chrissy
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I feel like I come here so often..... In May I got a PET scan because I was having so much pain in my joints I had a meltdown in my MO's office. I changed AI's from exemestane to Femara. Last week in August I started with a dry cough. Of course my head goes to all kinds of places. Shortness of breath. Pain in my chest. I went to see my primary and he put me on steroids. It has reduced the inflammation in my chest. So no pain, however the cough is really terrible. Non productive and it has me gasping for air.
I see the Pulmonologist on Wednesday. I made the appointment myself. My question is can lung mets grow so quickly that a PET scan would miss them?
I'm really worried,
Thank you.
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Hi Schoolcouncelor, don't worry about coming here often or asking too many questions as there is no such thing as too often or too many.
It's not very likely that a PET scan would miss lung mets, I'd be more inclined to think SE from the Femara. I say this because I have a dry non productive cough also but no mets..........for me it's just a SE of Femara that I have had for at least a year now.
Goodluck with your appointment with the pulmonologist, keeping everything crossed that the outcome is good for you.
Love n hugs. Chrissy
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Thank you so much Chrissy!! I'll keep you posted!♥️♥️
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My mom has been NED for about 9 months. She was on herceptin and perjeta after finishing chemo in January. She has had no treatment for the past 3 months and will have a PET scan in 2 weeks and I am terrified. I cannot help but feel like it's back because of no treatment. I need some encouragement for my scanxiety. I need her more than ever right now. More than ever....
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Hi all, update to 9/11 post. I did the CT on the 16th and had an allergic reaction to the contrast. While in the ER I asked the doc if the scan had been read yet. He pulled it up and said he was very sorry, but that it showed extensive liver mets over 50% of the right lobe and extension to the left with portal invasion. Also some local lymph nodes enlarged. I was admitted to the hospital and my MO saw me the next day. She scheduled a liver biopsy, right breast biopsy and a port installation for Friday. FYI- do not do all that in one day!!!! Hell of a night. I was not a compliant patient that night! Will be starting Kadcyla next week and have a PET scan on Wednesday. My prognosis is not good. I am hoping to make it until my youngest son graduates from high school in 20 mo. and my MO said she would treat me aggressively. Guess I will go to the stage 4 boards. I wish you all well.
My TM's were accurate. I had a 30 pt jump earlier this years, but it was disregarded. Should have insisted on scans.
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moni, I am so sorry to see your post and learn what's been going on. All I can say is, please don't feel hopeless! There are many women on BCO who have been dealing with liver mets for several years, and there are far more tx options for them than in the past. Do you have a copy of Bestbird's wonderful compendium of txs? If not, PM her and ask for one. I think she's shared it over 500 times already, and I know she'll be happy to get you a copy if you don't already have it.
It sounds like your onc is doing all the right things. Aside from probably still being somewhat in shock, how are you feeling? Big (((HUGS))) to you, and thanks for letting us know what you've been going through. I wish the outcome could have been different, but I'm glad you didn't let things go any longer and will soon be on a tx that will hopefully stop this stuff in its tracks! Deanna
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Hi Deanna, yeah I would say that shock pretty much describes it. Maybe blindsided is better. I figured the breast lump was a recurrence with the BIRADS 5, but the liver mets came out of the air. Physically, I am having continued bilat upper quad pain, but mostly the port is acting strangely. Positional changes are causing a racing heartbeat, will be calling the MO in the am. Uuuggghhhh.........enough already! Thank you for your support. I did pm Bestbird for her ideas and she very graciously has already responded!
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Moni: sounds like your line may be a little long and stimulating the fast heart rate.
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Beatmon- yes, that's what I am thinking. A very strange sensation, fast and hard. Feels like my head will explode! Anyone have anything like this?
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Hi Almasi, if your mom was lower stage and completed her treatment then the odds are that her three months with no treatment will gave no effect at all. It is normal in fact to not be on constant treatment as it is deamed unnecessary. Constant treatment is for stage IV only and even then, we do get some breaks.
Hoping all is well for her scans.
Love n hugs. Chrissy
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Oh Moni, I am so sorry to hear what is happening with you........blindsided indeed. There are many women who have been given what seems like disastrous news only to find with aggressive that their prognosis improved remarkably.
Yes, it does indeed sound like one of the leads of your port is too long or not positioned correctly.
Sending love, ((((hugs))))) and strength. Chrissy
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chrissyb, My mom is stage IV and has been NED since January, that's why I am concerned about stopping.0 -
Oh, okay Almasi, I'm sure that if your mom were having any pain she would report it to her doc.
It is the unfortunate thing about stage IV, that we can have a really good response to a treatment that can keep us NED for a long time before further progression is detected but it is pretty sure that at some point there will be progression.
I understand that you fear for your mom's health, i also have daughters who fear for mine but I tell them that every day is a bonus day so just make the most of them as they come and not to worry over what might be rather than what is.
Keeping everything crossed that your mom's scans are all good and she continues to be NED for a long time yet.
Love n hugs. Chrissy
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Moni- I am so sorry what you are going through, I think that is all of our worst nightmares! Stay strong and wish you lots of good thoughts for your upcoming treatments.
- I have one concern I'd like to share that keeps creeping up on me. I am 2 years since diagnosis and doing rather well. Last year I complained of rib pain and after bone and CT scan was told I had 2 rib fractures (but can't recall injuring them). Then about 10 months later I had another bone and CT scan and the spots were still there, slightly more intensified but the report came back saying it was fractures once again. My MO sent me for bone density scan and while the technician told me I was just bordering osteoporosis but nothing to worry about my MO told me I do have osteoporosis (I am only 33 btw) and that most likely explains the rib fractures. Now a few months later my ribs still, nothing excruciating but every time I feel it I just hope nothing was missed. Am I being too crazy?
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