De Novo Stage IV
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DDIL,
Sorry that you find yourself here. I want to address the “head scratching” . The reality is that although we can take many steps to stay healthy, cancer doesn’t care. Thirteen months after a clean mammo, I was dx’ed stage IV. I was healthy too as were many here. People often say that their bc came out of nowhere but that’s just the nature of bc. We do the best we can but there are no guarantees.
After 10 years, I can relax a bit more but of course thoughts of bc flit through my mind daily. I also realize that I am fortunate to have had a relatively easy time of it but I do remember the beginning was very stressful.
Take care
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Hi everyone, I'm new here. I copied this from my other thread:
I was just diagnosed yesterday with de novo MBC. The PET scan showed "1. large hypermetabolic left breast mass, consistent with invasive ductal carcinoma. Regional nodal metastatic disease to the left axilla. 2. Numerous lyctic osseous metastases. Many of these are small, but a lesion in the L2 vertebral body show significant osteolysis and could be prone to pathologic fracture."
I first noticed the lump out of nowhere in October, as I definitely didn't feel anything out of the ordinary over the swim season (the way I put my swimsuit on, I would have felt this). I convinced myself that it was nothing, and procrastinated about having it looked at, since I have dense, lumpy breasts. I started having back pain a few weeks after. I obviously did not think they were related.
I am still trying to process this.
My MO has me starting tamoxifen and ibrance. Radiation starts Tuesday for the spine.
I don't know what questions I should be asking. Does the treatment sound reasonable? I'm 44 and premenopausal.
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LI77, I’m so glad you’ve come here. Please ask any questions you have. I think the treatment you’re starting with is reasonable. I am full of cancer in bone and bone marrow from skull to femurs. I’ve never had radiation, but I think it’s because it’s everywhere and would be too much. I am in pain, but I’m not having issues with possible bone breakage at this point.
I’m really sorry you’ve joined us.
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LI77, I'm so sorry, too. This can be an overwhelming time for you. I also started with radiation to my hip and spine. It greatly reduced the pain in my hip. One thing I was not prepared for was the use of the word "palliative" when the nurse was talking about the radiation treatment. I incorrectly assumed that "palliative" was the same as "hospice". They are NOT the same thing.
"palliative care" is defined as "compassionate comfort care that provides relief from the symptoms and physical and mental stress of a serious or life-limiting illness."
You have so much going on right now. Come visit us, ask questions, and for the most part, avoid Dr. Google.
(((hugs)))
Carol
(I'm not de novo, so kick me off of this thread if I don't belong here.)
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Sunshine99, please don't ever feel you would be kicked off. I welcome all.
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LI77 - glad you found us! Sounds like a standard approach, although I was put into menopause with injections and had letrozole (for the postmeno ladies) instead, though I dont know if its because I was so hormonally charged (100% ER and PR) or if its a different standard here in the UK. Im also 44, but dx'd just after 42, I think my tale is on the first page of this thread. Like you I was putting that boob in and out of a swimsuit several times a week and just didn't clue in at all. I even had a terrific swim the day before I thought I twisted my pelvis out again, although in retrospect I had odd back pain from 9 months prior and my walking gait was changing ever so slightly over the prior months.
Im getting a vertebrae zapped this coming week too
! It will seem all very overwhelming, all the medical tools and the like, but you will get the hang of it. Better to zap than to fracture.Has anyone mentioned genetic testing to you?
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hi. I just got home from my first 1/2 mammo/US post diagnosis, post mastectomy. Mammography said "oh, nice to see you again! I did you last year." I was feeling very out of it and didn't really answer, unlike me. Then after a short wait I was called for the US. Same thing "so nice to see you, I did your ultra sound last year." I was a little more prepared, so said thank you to both of you for catching the cancer." But still I felt numb. I got to the dressing room and it was all I could do to not burst out sobbing. All I can think is what if they find it in this one too? I'll have to hold off treatments longer and go through all the biopsies and scans again!!!
Anyway, now I get it. Scanxiety. I'm really tired.
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Fixed- I think my diagnosis shows up but I'm also DeNovo.
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Hi KBL,
I’m de novo invasive lobular as well
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Exbrnxgrl thank you for the encouragement. I’m glad to hear things are going well for you it gives me hope.
I know I need to move forward which I’m trying to do. I just have up and down moments still. Hoping once I see things are changing for the better i will be able to cope better.
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DDIL,
You are very welcome! I know we’ve said this many times but the beginning part of all bc diagnoses, particularly de novo mbc, are the most difficult. Even after the initial period you may experience ups and downs. I had the rarest of all complications when having my port installed and never even ended up having IV chemo! That was almost more of a surprise than the mbc and resulted in a horrible week in the hospital and then a month at home with a portable chest tube.
My advice is to try not to focus on what you don’t yet know or spend to much time on speculating about the future. Take care
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DanceMom, I’m sending hugs your way. I can’t imagine what it was like for them to remember you. I hope you get some good rest.
DDIL, thank you for putting your stats. Lobular is such a sneaky b****. I have had my ups and downs and still do after a little over three years of knowing. I hope you get many years on Ibrance and Letrozole. If it were up to my docs, I would still be on it, but I listened to my body and switched. According to my tumor markers, I made the right decision.
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KBL: what happened that made you want to switch meds? Did you have side effects on Ibrance? Or it was not working?
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DDIL, I only found out I had had cancer through endoscopy because I had lost a lot of weight quickly and would just eat a few bites of food and not be able to eat. After going on Ibrance and Letrozole, I was able to eat again and gained back about five pounds of the 17 I lost. I felt better. Tumor markers came down but not as much as I would have liked. At the two-year mark, I once again lost the five pounds I was able to get back and was going down even more and the same symptoms happened. I wasn’t able to eat a lot. Also, imaging doesn’t show the Mets to my stomach, but a CT showed gastric wall thickening. To me, it meant something was happening. I switched to Xeloda and fulvestrant, and I am again able to eat and have gained eight pounds back this time. I have to rely on my stomach to tell me when things are not right. My tumor markers are still above normal but have come down considerably. I’m happy the Ibrance and Letrozole worked while they did.
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Dancemom praying you get great news on your scans.
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nervous again.. I went for my skin check and the dermatologist found two suspicious spots, biopsied and now waiting and praying it’s nothing. Dealing with one thing is enough.
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DDIL, I’m so sorry you now have something else to worry about. Please keep us posted.
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Good morning ladies-
I find myself posting this with a large range of emotions and thoughts..and I am sorry if I offend anyone here with this post, it is NOT my intent-I was going to wait to post this tomorrow after I see my MO, and maybe have some of my questions answered in more detail, but realized laying here this morning how much I value all of your knowledge, and that if anyone wanted to offer any advice and give me some questions I should be asking before my appointment tomorrow, I would really be grateful. I don't want to seem selfish...
I want to start by saying I have been restaged on Friday to a stage III. If anyone wants to stop reading now, I understand. My life has been turned upside down, and I don't know which way is up still almost 48 hours later or what to believe. Clearly to be diagnosed as a de novo stage IV patient for 6 months, and now this-, and I understand this isnt the proper forum and thread, and will move on somewhere else but Im desperate for some thoughts and suggestions. Can someone redirect me on where I should post and anyone interested in offering advice or questions can follow? I don't know where this/I belong.
Long and short of it-the RO took all my films, my two pet scans, all of my MRI's etc to the tumor board on Friday which he told me he was going to do. He said he would call me Friday afternoon. My MO called me early afternoon Friday to tell me after all the radiologists on the board reviewed all of my scans in succession, none of them believe what was the met in my L1, and what has always been a questionable met in my clavicle, and what the RO was concerned about in my shoulder/glenoid/scapula region after my 2nd pet-and concerned because this area was not on my initial pet in Sept-that none of it is cancer. They believe my back is an atypical hemangioma. I have a few things on my shoulder non cancer related which were noted in my MRI I just had last week. I don't really have or remember if there is an explanation on my clavicle. I can provide more details but I really don't want to be insensitive here..By Friday afternoon I had talked to my MO twice and the RO once..it was such a rush of information-I am still working full time and have a demanding job. I had a crazy afternoon work wise, had to disconnect myself from two Zoom meetings to take two of the three calls, and had work people calling me repeatedly during all of these calls (which I didn't answer) to find out why I had disconnected, blah blah. It was a very hectic time and I took notes from all conversations but not nearly enough-and I just have all these holes and gaps that I need filled in.
Anyway-thank you for still reading if you are-I have great respect for everyone on these forums..If someone can kindly redirect me..I just didn't want to start posting somewhere else with this information and abandoned this thread without an explanation.
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Eastcoast, Congrats on on the downgrade, although I can’t imagine it’s a huge relief since you’ve spent 6 months going through all the emotions we have but I guess you’re better prepared if it does progress eventually. I seems a bit odd that mets were assumed all this time without a biopsy to confirm but I know that’s not always possible. There is a stage 3 forum, if you want to check it out and of course plenty of others that aren’t stage specific for more general stuff. You’ve been on a hell of a ride, I wish you great luck moving forward.
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It is true that lesions seen on scans can look like cancer but not BE cancer. That’s what we all pray for. Did you have a biopsy to any of the bone lesions ? If not, you could ask if they are willing to do that so you can be sure
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Thank you illimae and Olma-I just got out of the shower and wanted to post that I do realize there is a stage III forum, I just feel like I don't belong here or there and that is ok for now,
I dint have any biopsies..my MO felt the L1 was too deep and with the obvious issues w/ bone biopsies didn't feel like it was warranted. My clavicle was always a question mark and the shoulder was new in the last 2 weeks or so..
Anyway- I will stop posting here unless Im asked questions..I want to stress that I am acutely aware of the situations on this forum-It was my situation until 48 hours ago and will probably become my situation again down the road..Again, I have great respect for all of you.
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Eastcoastwestcoast, that's wonderful news! The doctors felt the possible lesions needed to be treated and here you are. I hope you stay III but I personally don't mind you posting here.
I have my mets I'm being treated for that they won't biopsy. (Sternum and internal mammary glands) They decided thoracic surgery for a biopsy is not worth the risks of that surgery. (Taking the boob was enough surgery for now) So sometimes I'm not sure if I'm really supposed to be here. But the diagnosis is 4 with all the ibrance and emotional baggage that comes with it.
I think, Eastcoastw, that the emotional stuff you've dealt with recently is beyond what anyone on the III area will be familiar with.
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EastcoasttoWestcoast, bone biopsies can lack accuracy and please do ask your MO about this. There are different ways they can be processed. My second biopsy came from a bone and all the testing off it kept qualifying that their assessment was from desiccated material. My current MO isn't totally confident of the bone biopsy either.
IMO No one should be offended with your post here.
Best wishes
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Eastcoast- Wow. What a roller coaster. To think of being Stage 4, and now not Stage 4. Your profile says you are on Kisqali. Will you continue the CDK 4/6? I think there are studies with Ibrance being used for "early stage". And scanning--- will you still scan periodically? How about a second opinion? I mean, to now be told that your bone issues are not cancer, but something benign. Wow.
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EastCoasttoWestCoast - My first question would be whether there would be a change in treatment. I don't know if Ibrance is approved for Stage III, but I'm thinking since Verzenio is, maybe it's in the works. If there is no change in treatment, and you're still scanning (albeit maybe less frequently), I think I'd breathe a big (tentative) sigh of relief - tentative, because I can't imagine any of us just completely letting go of the worry.
Also, I can't recall if you're being seen at a major cancer center. If I were not completely comfortable with the re-staging and were not at a major cancer center, I'd want a second opinion - for the peace of mind, if nothing else.
This is all just based on how I would handle that information. I think I'd go crazy otherwise.
And, I don't think it's inappropriate for you to post here.
Hoping for the best for you.
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EastCoasttoWestCoast, I can’t even imagine the roller coaster ride you’ve been on. I am not offended at all. You thought you were Stage IV and came here for comfort. I would also want a second opinion to be sure. I absolutely don’t mind you posting here. I would hope the moderators would understand that for six months you were told you were de novo. I am happy for you that they’ve restaged. Do not hesitate to come here when you need anything or have questions. Hugs.
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im in tears-and I so appreciate the support. Im so thankful for each of you and your thoughts. I have many of the same thoughts and questions myself, and I definitely intend to have much more clarity tomorrow after my appointment which just so happened to be scheduled for then even before this.
Dancemom, Thank you, you have always been supportive.
Cocogal, I bungled my typing initially, but I did not have an bone biopsies..but thank you for sharing that since one of my questions on my list is do I need one to confirm this?
Candy-678, I am taking Kisqali/Femara(Letrozole) and as I understand it, I will stay on it until I start chemo which is my next step. If I am recalling the conversations correctly I had w/ my MO, the only thing that would have changed if I had been stage III initially is the order of treatment with chemo being first and meds second. Even though as communicated to me the radiologists are "100% confident" my MO and RO agreed (as did I) that they would like to keep scanning me frequently the first year/year and a half. I need that mentally, although those are tough mentally. I would rather be kept a close watch on than not.
I also am considering a second opinion. I am a healthcare worker although on the admin side, I am not a clinical person. I am being treated within my organization of hospitals and feel confident, however, I am so thrown off, I sort of don't believe it or feel comfortable believing it currently. They told me I could speak to one of the radiologist present at I am going to do that.
SeeQ-Your thoughts are very similar to mine. Yes, you are correct, my MO already told me I would need to come off Kisqali during chemo and because its not approved for surgery or after, again, if Im not mistaken. Definitely one of my questions-being on the Kisqali for 6 months and how this all factors in. The RO used the words "cautious optimism" as he wanted me to have realistic expectations which I do-I know Im walking some tight line and he wanted to let me know my disease is extensive in my breast and lymph nodes and the chances of this coming back and being metastatic etc etc. I think they forget Ive been living in this place since diagnosis..and definitely mentally am still there-without a doubt. It seems too good to be true and Im fearful to alIlow myself to believe. Like I said, Im hoping to fill in some holes tomorrow. They said it wasn't really "rare" that this happens, but that it doesn't happen often. I don't really know what that means, and I need to know how often it does happen. For some reason, this is important to me.
KBL, same to you-thank you for always being so supportive..I don't know how I feel about posting here. After my earlier post today I cried to my husband. I probably have too much empathy for others in general, and I just don't want to rock anyones boat. For all I know I could be back here in 6 months legitimately.
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EastCoasttoWestCoast, I can definitely sympathize with you. I have ridden the roller coaster, being told in 2013 I had cancer, then nope, I don’t have cancer. Then the same thing in 2015 and 2016, three separate times, on the cancer train and back off every time they couldn’t find multiple myeloma, only to be told, oops, it was breast cancer that whole time, oh, and now it’s spread to your stomach. Please do not ever totally believe, and go with your gut and symptoms. My case was a huge missed diagnosis. The system failed me big time. I wish that never had to happen to anyone, but I know I’m not the first or the last.
I hope it is Stage III and that it never turns to Stage IV. Be cautiously optimistic and continue to scan, as you say. If it is in your bones and they treat, you can live a very long time.
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"They said it wasn't really "rare" that this happens, but that it doesn't happen often."
Please forgive the cynic in me, but this sounds like CYA-speak.
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Dear Eastcoasttowescoast, wow, first of all, huuuge congratulations!:) This is the second time I hear something like this - there's an American woman who was diagnosed stage IV by imaging and treated heavily for years, and was continually progressing until she changed the clinic, and they took biopsy, and it was not cancer at all! In your case... let's hold our cool here. It is not a secret that stage III experiences many relapses, so it'd be smart to do some things to really stay healthy forever: a) biopsy one of the most previously suspected lesions/sites; b) stay on treatment until you want to, feel safe or until unacceptable toxicities come, or indefinitely (5 years?), and I hope that re-staging would allow you this option if you want to as you have been put into terrible situation, and risks are well known; c) not deescalate scanning at least for the first year or two. And finally: d) do not leave this thread, as you certainly belong here!:) Saulius
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