If you are not Stage IV but have questions, you may post here
Comments
-
hopeful, I agree with Chrissy -- honestly I asked my sister in law not to tell my niece and nephew -- I wanted to wait until I had my surgery and full path report first. She went ahead and told them. It felt very disrespectful -- now that definitely has something to do with my relationship with my sister in law --but still I think it's her news to tell.
0 -
Hi! I haven't posted for a while. Had DIEP surgery on December 12. January 30th had follow up with Oncologist Tumor Markers slightly elevated at 48 (CA27-29) repeated in a month went up to 58. Upper back pain (from weird position after surgery or mild scoliosis). Had PET scan showed activity in abdominal lymph node and Liver. CT scan taken a week after PET confirmed it. I had CT guided biopsy of lymph node negative. CT guided biopsy of Liver (9 samples taken to make sure he got very small area in question) also negative. Had repeat Tumor Marker test last week which was up again at 66 she is still calling it slightly elevated. Dr. wants to repeat CT scan at end of May and if anything lights up do another biopsy. Is it too much radiation and scanning? Dr. probably is convinced it is Stage !V cancer that hasn't shown up yet. I posted question at John Hopkin's and answer was Tumor Marker test unreliable unless you are confirmed Stage 4. My Dr. believes in it. I am on Tamoxifen had Chemo ACT and Radiation.
0 -
Dear Karen,
I can certainly understand your concern about too much radiation, as you've had several CTs already. You might consider asking for an MRI with contrast for your next scan. They use magnetic imaging and give no radiation. My onc prefers them, partially for this reason. But they also can be very good at finding cancer.
0 -
Hi Karensusan, your tumor markers are elevated but still only very slightly. This elevation can be caused by other things as well as BC such as inflammation. Considering it is not long since your DIEP I would be thinking inflammation rather than BC but its good that your doc is on the ball. I think if it were me I would be asking to wait a little longer for another scan...............as my doc says with a lot of scanning its almost like doing rads by proxy.
I know it's hard to be in a place that is in between as it brings with it a lot of fear but if it is stage IV it really doesn't matter if it's found sooner rather than later as the treatment is still the same. Giving your body a bit longer to recover from your op and all the scanning that has already been done is probably a good idea.
Love n hugs. Chrissy
0 -
Thank you Chrissyb and Sandilee. I had asked about an MRI but my Dr. Prefers CT scans and PET scans. I know Tumor markers aren't always reliable. I guess what is bothering me is the thought that my Dr is convinced it could be cancer that has come back. She repeated that having Benign biopsies was a good thing and the fact that I feel good but hopefully they Biopsied the right spot. Initially I was told the Liver spot was too small to Biopsy but the Interventional Radiologist was convinced he could get the required sample (they took 9 after the first 4 samples came back negative). I am trying to get my out if a dark place right now but finding it difficult.
0 -
Karen it could totally not be cancer. I mean, it could be, but it could totally not be as well. It sounds like your doctor is very cautious, which is good. I know there was someone on another thread that had cysts or something on her liver for awhile that the drs were concerned about, but it turned out to be something benign. I don't remember the details, sorry (though I do remember the person). In terms of the tumor markers going up, mine also went up about 20% and I was a little concerned. I googled it and it looked like a lot of the women who are stage IV have tumor markers that go way, way up -- like to 10,000 or something. I don't know much about those but it did make me think that an increase of that size wasn't likely to mean much. In terms of the radiation, it does seem like for treatment purposes it would probably be better to let more time pass in between. But I realize there is your state of mind to consider...
0 -
I have opted to change my appointment with Radiation Oncologist From May 20 until next week. Figured she would be a good second opinion.
0 -
Karesusan, sounds like a plan and it will put your mind at ease quicker........good luck!
Love n hugs. Chrissy
0 -
I don't know if anyone remembers me here, I posted on April 2nd about a strange MRI finding in January that led to the BC diagnosis? The MRI was of my sacro area and at the S2 there was an 8mm focus that they couldn't confirm, but said it possibly an atypical hemangioma (very rare to be there) or potentially metastasis. My Dr's had said to have my well woman as I was behind and if everything was clear (thinking if it had spread it was from breast or pelvic) we would revisit and decide what to do.
BC is DCIS, but oncologist reviewed everything and they are doing a Petscan on me. I'm assuming they couldn't tell by looking at the CD or they have to rule it out? A few here suggested that, so wanted to let you know I'm having a Petscan in a few days. Today they said they were going to try and do it this week, but didn't hear today, so maybe Friday or early next week.
I just need to find out why I am in so much pain in that area. And the bottom of my foot has some numbness.
How do they decide to do bone vs Pet?
Thank You!0 -
Hi Momto3boyz, yes I remember your post. Sorry to hear that you have DCIS. The PET will give a good view of the soft tissue so should be able to pick up if you have an hermangioma, collapsed disc or herniated disc which will cause you a mega amount of pain and possibly impinge a nerve causing the numbness is you foot.
With DCIS which is Ductal Cancer In Situ which means it's contained within the duct, your pain is unlikely to be mets.
Do let us know the results of your scan and good luck!
Love n hugs. Chrissy
0 -
Thanks chrissyb! I understand DCIS is contained and that is what is strange about all this. I only found out about the DCIS because of the strange MRI, they thought if it was cancer that had spread it probably came from breast or pelvic as I was delinquent on my mammo etc. So, they had me do all those tests and DCIS was found (really incidentally), but we still didn't know what was on my sacrum that started it all. Collapsed and herniated disc, all that stuff are ruled out. Oncologist has my CD and report, and after reviewing it ordered the PET. Hopefully it will be my first and last, but get us closer to what the issue is.
0 -
Momto3boyz, I'm keeping my fingers crossed that it will be sorted soon and that it is nothing really nasty.
Love n hugs. Chrissy
0 -
well I found out a bit more about my sons stepmom. So the type of bone met she has is in the roterry cuff on the shoulder. She had her radiation today, starts chemo the 1st. They are giving her injections to stop the ovary from functioning because it is hormone driven. Once the chemo is done she will have it removed.
The doc uses her as a case study because they have never seen this before.
She had the BC in her right breast and the bone met is in the left shoulder and no where else. They are hopeful that they can kill it all so... Hoping for many more years with her.
0 -
Hopeful that is great news for her and you!
Love n hugs. Chrissy
0 -
I am not stage IV. I want to apologize and I hope anyone who has posted on the new I'm Sorry thread sees this.
There has been a very emotional discussion today about unwanted/insensitive postings, especially to Stage IV Threads, and I was so heartbroken by the comments of one member who felt she had to "apologize" for expressing her feelings, that I broke my own rule of NOT posting on Stage IV threads, to say.....she had nothing to apologize for. It was a knee-jerk reaction on my part to some incredibly emotional messages. It is me who needs to apologize.
Given the discussion, I realize even though I meant to offer support, it was inappropriate for me to post there, and have deleted it, but obviously, there is still a record of me posting on that thread. If anyone on that thread sees this post, please, accept my apologies, and my wishes for better times for you.
0 -
Nihahi -- no apology is needed from you either, in my opinion. Messages of support and love are never inappropriate.
0 -
thank you kebab.....that was truly the intent of my message.
0 -
Nihahi, I agree with Kebab, messages of love and support are welcome no matter where they are posted so there is no need to apologise.
Love n hugs. Chrissy
0 -
Nihahi, I'm adding my stage iv voice to Chrissy's and Kebab's--absolutely not a problem in my book, but totally sweet of you to post this here about it. Thanks
0 -
Dear JMS,
I am a stage 4 from the get go nurse practitioner. I work with pain management. Do not worry about pain...If your doctor so desires to prescribe, there are plenty of medications to prevent you from having any suffering...There may be discomfort but you should not have true pain...Be assertive, and remember that you have support and prayers from those of us who are walking similar paths. Carolyn from Fl/Tn
0 -
Concerned about two Stage IV sisters who regularly posted on other threads throughout BCO. Have not seen any postings by either of them, and do not know where else to ask. Is there any way to find out if they are okay and just taking a break from the boards? Aaoaao (last seen 2/26) and NickyJ (last post 3/18) are the two sisters.
0 -
Robin, one of the gals from Insomniac tried to reach Nicky....she is not in the Central Address Book. I actually do not know what that is, but the obvious. Well, I just have never ran into it.
I have left posts on her thread....she is a sweetheart, I am very concerned..
0 -
Holeinone, thank you for responding. Many of us on the Triple Positive thread are concerned about Nicky also. Aaoaao, I ran into on the Port Placement thread, I don't believe she is in the central address book either.
0 -
Hi girls, Aaoaao was last seen on the boards on 27th February on the Port Placement thread and NickJ was last seen on 28th April on the Bone Mets thread.
Hope this is helpful.
Love n hugs. Chrissy
0 -
Thank you Chrissy. I will be praying they are just taking a break from BCO.
0 -
NickJ posted in March that she had been in the hospital and was going to have to go back again. Someone also posted that there was no wifi at the hospital -- I can't remember if it was NickJ.
0 -
Pajim....THANK YOU for that link! I am still concerned but that is so helpful to know. It is a little more info than I had before. I will share the news with my Triple Positive sisters. Thank you again!!
0 -
Stay in peace. No one here is punitive...maybe a little sensitive but please know that Stage 4 is an emotional place to be. worry not...Anyone with breast cancer has a lot on their mind. Carolyn
0 -
I think she is in and out of the hospital with spine issues. My best guess is that the spine issues are caused by the cancer, but not that it is necessarily spreading all over the place -- I think it is "just" causing a lot of painful secondary problems. ("just," I know...) Anyway that is my understanding. She always seems remarkably upbeat, I do hope to read good news from her soon.
0 -
Nicky posted fairly regularly on Insomniac thread. She told us about her life growing up in Ireland and the move to France. She reported about her 2 sons & daughter at the university.
We all loved her stories and hoping she will post soon.
0
