De Novo Stage IV
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hjernt, good luck tomorrow. Thinking of you. Virtual hugs.
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Sending positive vibes for surgeries and scan results
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ladies thank you for sharing CA numbers. Wishing everyone best of luck
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hjernt thinking of you. All the very best with surgeries. Please check in here when you can. Big hug
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Hi all!
I'm doing well after surgery. It was a Looooonnngg day. I arrived at 7am and left at 8pm. No issues with coming out of anesthesia and all the doctors and nurses were amazing. Hubby was kept updated via text and phone since he wasn't allowed in the building. I've got some good pain meds and have been chilling on the couch all day. Some pain in the abdomen but breasts and underarms are pretty numb so no pain there!
Thanks for all the good vibes!
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hjernt, so glad everything went well. I hope you don’t have too much pain in the following days. Thank you for the update.
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hello everyone,
I am glad to see this new topic. I was diagnosed de novo in October 2016. I did not have a discernible lump in my breast at that time, but I presented with terrible abdominal pain. My GP ordered an ultrasound of my gall bladder. I was informed the next day that I had spots on my liver. One of those spots was an 11 cm. tumor. Yikes! After a biopsy it was found to be ER+ Her2- breast cancer in my liver. I started Ibrance and letrozole. I am still on that first line of therapy, stable now for 3 and 1/2 years. Kat
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that should read Kate. I'm a terrible typist.
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Hi, Kate. Thank you for your story. I’m glad they were able to identify your abdominal issue and get you on treatment. That’s so great to hear that you’re still on first line of treatment. That gives me hope.
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Thak you, KBL. I think there is a lot of hope out there for all metsers. I have read multiple articles wherein doctors feel that de novo status may be a plus for longevity. De novo cancers are treatment naive and, as a result, more sensitive to therapy. It seems as if there are many lines of treatment, and new ones always popping up on the horizon.
Blessings to all on this thread, Kate
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Kate, I’ve read that too about de novo patients. So far even with brain mets, I am lucky to still be on my first line treatment 3.5 years after diagnosis.
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Kate- I get inspiration from your story. I was de novo with an 8cm liver tumor. And I am still on first line therapy going on 3 years. Gives hope to hear of others.
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Hi everyone. Also glad to see this new topic, thanks KBL. I was diagnosed in June 2015 at age 56 Stage IV de novo after initially being dx Stage IIIA. I had no discernible lump, but suddenly noticed a left nipple retraction. Got an appt with PCP, who didn't feel a lump either, but sent me for a mammo and US. Wham! BC, which I already figured. Next up, a confirming biopsy. In the staging process, I was also sent for a breast MRI. The radiologist saw something in the liver, so I was sent for a PET scan. PET determined in the liver was a benign hemangioma, but it found bone mets. I had no symptoms of the bone mets. After 4.5 yrs of NEAD though, I now have liver mets that may have previously been diagnosed as cysts.
I think I've had this cancer since at least 2006. That year, I felt really fatigued and my iron levels were at the low end of normal, but I chalked it up to aging and still having heavy periods. My PCP at the time disagreed, saying "something was taking my blood." Being worried about my family history of colon cancer, she sent me for a colonoscopy. It was clear without even a polyp. We never suspected BC, so I began living in blissful ignorance putting off mammos.
Re mammos at Stage IV: My BS sent me for mammos the first 2 years after initial tx ended, but later my MO said I really didn't need to do them since we're scanning with CT every 3 mos., so I stopped.
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Bliss58, thank you for sharing your story. I am glad you said something about feeling like you’ve had this since 2006 because I wonder if I’ve had it since 2013
I won’t go into my story again, but I’ve had what they’re calling diffuse lesions in my spine on an MRI since 2013 that has progressed, but since that’s the only thing that’s ever shown anything, we haven’t figured out what it is. I’m going to have a bone biopsy on August 6th to see if it’s been cancer all that time. If it comes back negative, then I will assume that it’s a benign process that I won’t have the answer for.
I had a CT where they said there was something on my liver, but they thought it was a cyst. How did they find that yours was cancer?
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KBL, I had a routine CT scan in Dec. The radiologist thought he saw a couple new things in my liver suspicious for metastases, but suggested an MRI which I had in Jan. That radiologist went back through my CT scans and thought he saw these lesions reported as cysts in 9/2018, so he recommended a PET/CT that I had in Feb. It lit up in a couple places, but my MO was still not convinced it was BC, hopeful thinking on her part, because the CT didn't measure any lesions; too small I guess? She recommended a liver biopsy that I had in May which did confirm BC.
Good luck with your bone biopsy. I found mine to be very easy except the meds made me groggy and a bit nauseous afterwards. I had the same meds with my liver biopsy and mentioned this to the nurse, so they pretreated me with an antinausea med and I felt great afterwards. Hope you finally get an answer.
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Thank you, Bliss58. I’m sorry you had progression. As things aren’t seen in my scans, I guess I just have to look forward to biopsies every time there may be an indication of progression. I appreciate you telling me how they found them.
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Hi everyone. Also stage 4 de novo. Been living with it for almost six years now. I had a lump, but ignored it until it was literally rising from my breast and you could see it by looking down at it. I don't know what was going on for me then; must have been undiagnosed major depression. I believe that the IUD I had for six months contributed to my cancer's growth. I also believe what my acupuncturist says, that disease originates from stagnant energy and persistent negative emotions. My first staging was 3A, and they set me up to get a port for IV chemo, but when they x-rayed my chest to see that the port placement was correct, the surgeon noticed my left lung was filled with fluid. A PET scan found mets on my sternum, lung and a few lymph nodes.
Was prescribed Tamoxifen, which killed the mets and left the breast and lymph tumors 50% smaller. After a couple of years some growth was noted and I was switched to Ibrance/Faslodex. We are in another liminal stage where it looks like the cancer could be growing again, but we're not sure.
No other surgeries for me. No IV chemo (yet) and no radiation. Most people are confused by my condition and my treatment. It is good to have these topics, and it is good for us to come out of our metastatic closet and be seen.
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NineTwelve, thank you for your story. I hope there is no more progression. Will you have scans to see? I know what you mean when you say people are confused. For the most part, I look normal and like nothing is wrong.
Please keep us posted on how you’re doing. It’s nice to see people living for so long with this disease. I’m coming up on two years since my symptoms started.
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Hi everyone. I was diagnosed with triple negative stage 4 de novo in July 2019. I felt lump in June 2019 in left breast that wasn't necessarily painful, but felt like a bruise when pressed. I went in right away to get it checked out which led to a mammogram, ultrasound, then biopsy. Initial dx at stage 2, but I requested a full breast MRI and body CT scan where small lung nodules were found. I also had my yearly physicals and mammograms. My prior one was in December 2018 which they said was all clear, so somehow in 6 months I ended up with a almost 3cm breast tumor and numerous small lung nodules. There is no breast cancer in my family and I tested negative for all genetic genes. I have always exercised regularly, pretty healthy diet, normal weight, no smoking, and have always been very healthy. My only vice is I love my beer. So who knows why I got this, but I have quit asking why and feel blessed with my life so far. I am on my 4th treatment already (praying this latest one will work). My lung nodules disappeared after first line treatment which was Taxol, but this breast tumor is being stubborn. No surgeries for me because they have told me no since I am stage 4. I am currently exploring 2nd opinions about that.
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Getting a little concerned that my retracted nipple has, in the last three weeks, become even more retracted to the point where there is just about nothing left. I've noticed though this has coincided with a significant uptick in physical activity levels. Last scans were five weeks ago showing stable breast tumor. I think its probably time to call it in tomorrow just for reassurance, as I don't have an MO call scheduled this month, but has this happened to anyone else?
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sjries94, thank you for sharing your story. It goes to show being proactive is the way to go. You would not know it had spread had you not asked for the extra testing. I'm sorry you've had to be on four treatments. I hope this latest one helps. I was also told no surgery because of Stage IV, but they never found anything in my breast either. It never hurts to get a second opinion. I did when I was first diagnosed.
SondraF, please let us know what you find out. I think it's a good idea to call and see if they can see you.
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sjries94,
Welcome to bco! I am so glad that you’re letting go of trying to figure out how or why you have bc. The truth is that no one really knows. Yes, there are individuals who believe they know why they developed bc but most of us don’t and neither do our doctors. Genetic testing is good but remember that even with a full gene panel, like Ambry, the vast majority of bc cases still show no genetic mutations.For me, the only value In finding out why I got bc is helping those who come after including my daughters and grandchildren. Personally it doesn’t matter to me to know why. My younger sister lived a very clean lifestyle for over thirty years. Shortly after her 50th birthday she was dx’ed with a uterine sarcoma and passed away four months later. I’m not suggesting that anyone live an unhealthy lifestyle but at this point in time even our best scientific knowledge can answer that question.
My timeline is weird so I actually had a bmx before the accidental discovery of mets about 6 weeks later. Since that time I’ve heard that a school of thought exists that Mx is a good thing to do as it lessens the tumor burden so it sound as if a second opinion is a good idea. I have seen several changes and advancements in the tax of stage IV in the 9 years since my dx. Still no cure, and I say that as someone who has been NEAD since initial tx, but progress has been happening. I know that I am only a scan or a biopsy away from progression but I have seen advances that give me hope. They are not happening fast enough and not each type of bc nor individual patient respond to new tx but the forward direction is clear from my long term perspective
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yes SondraF, mine retracted there is not much left! I actually talked to my MO about my thought which it might be due topt exercises, he didn't disagree.Anyway, scans are tomorrow, I hope those nasty TMs don't make a noise anywhere.
KBL, surgery is not an option for me either, my MO once told me surgery will not bring any benefit. But just recently I asked him again (I guess he forgot what he said months ago!!) he said the BS made a note that because cancer spread to skin, surgery is off the table.
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I-beat-it, can you tell me where the cancer spread on your skin? I’m sorry you’re not able to have the surgery either.
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hjernt, checking in to see how you’re feeling. I hope you’re still healing well.
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Yes KBL, on nipple skin and 2 very small spots on breast skin.
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(((((sjries94))))). We are here for you. It takes a long time to tease things apart in the early times.
You are not alone, and we're here for you.
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sjries94, I was initially diagnosed 3A and surgery was in my plan. Two wks later as part of the process, I was scheduled for a PET scan. Bone mets were found which made me Stage 4. MO and BS both said we would continue with the tx plan and they were still onboard with surgery if I wanted. That was over 5 yrs ago, but they also told me many teams won't do surgery once a patient is Stage 4.
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Thank you, I-beat-it.
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SondraF, my nipple retracted as my tumor shrank. Hoping all is fine and that tumor is still stable. Or even getting smaller.
We know that breasts change as we go through aging, weight change, childbearing, and menstrual cycles and not every change is sinister.
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