De Novo Stage IV
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Thank you for letting me know where the shot goes. So that wouldn’t be it.
DDIL, I’m so glad it feels a little better. I hope it keeps improving.
Great advice, DanceMom
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Hi all! It has been a while since I posted but I do lurk to keep up.
I am still stable with treatment every three weeks but unfortunately both my husband and I came down with COVID this past Tuesday. We both have our 2nd booster so this has been like a terrible cold. He is recovering a little faster than I am. I have a lot of drainage and a fun cough. Even so, I am improving each day. I just need a good nights sleep which has eluded me. Hoping Advil PM will do the trick when NyQuil failed.
In other news I have weened off of Venlafaxine (Effexor) to move to Gabapentin for hot flashes. I have been having more and more trouble with night sweats so my Oncologist is good with the change. Honestly COVID helped me just stop it after a couple of weeks.
Lastly I am so grateful to have all of this behind me for a long 3 week trip we are taking mid June. Driving up the coast of CA (we live in Texas so this is quite the road trip!). I had to push treatment out by a week due to COVID so this means less time between treatments while I am on my trip.
All to say that I check in on you all and am here in your pockets for treatments and all the insanity that comes with this disease. I am eternally grateful for this site and all of the amazing women who inspire me daily.
Heather
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Hi, Heather. I know this topic has been quiet lately. So glad you’re stable, but I’m so sorry you got Covid. I hope you have the best time on your trip. I have not had any medication for hot flashes, so I don’t know how gabapentin works for them, but I wish you great success. I agree with you that the women on this site are so supportive. Please keep us posted, and if you feel like it, post pictures of your adventure.
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Enjoy your trip Heather and yay for still stable!
I am checking in because I have moved and recently met my new oncologist, who wants to treat me with ‘curative intent’ (his words, not mine). Breast surgery is back on the table and he referred me for a mammogram and US which I will have in a couple of weeks. He also brought up the possibility of getting off Herceptin and Perjeta eventually, which is a very scary thought for me, even though I would love to leave it behind. Anyway that won’t be happening yet. Just hoping I can still get the PHESGO injection so I don’t have to go back to infusions.
I won’t qualify for Medicare for a few more months so I had to switch insurance providers, hopefully this company will be as smooth and trouble free as my other one was.
Hope everyone on this thread is doing okay and hanging in there. I will update with what eventually happens with breast surgery since that’s a much discussed topic for this thread. Take care, ladies
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Hi, Olma61. Thank you for checking in. I hope you like your new oncologist. Please keep us posted on your scans.
I got on Medicare last October. It was pretty easy, and I like the plan I have so far. Hopefully these next few months will go quickly for you.
Hugs
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Olma - I think that is wonderful news to hear! Sometimes I think its good to shake up a team and get some new thinking in, whether its through actively looking for a new onc in your local area or because of moving or other circumstances. Keep us all posted!
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Wow, dear Olma, "curative intent" is what we all want to hear. I think only the new generation of MOs can think of it. I think we have an old school MO though, dang:) Congratulations!
Saulius
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Olma such a great news! Double 👍 for curative intent. Agreed totally with Saulius, old school vs better thinker of MOs. Thanks for sharing your news.
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olma,
Sounds like your new mo is a keeper. I don’t mean to put a damper on things but I am still not understanding what curative intent means for a disease that has no cure. Regardless, it seems like a good thing.
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Thanks, everyone. Yes, he is a keeper (and he is young-ish) and it did feel great to hear those words, kinda like getting a winning scratch off lottery ticket Not a Mega Millions because after all, I still have MBC, but maybe a nice instant 500 or 1000 dollar ticket :-D
And yes, I definitely don't look toward a 'cure' I don't think I will ever feel like I am out of the woods even if I am able to get off the H&P and remain NED for a good long time. In fact, as much as I dream of being done with 'Every three weeks at the cancer center' the thought of really leaving those drugs behind scares the hell out of me. Although, let's see how I feel if I have to go back to infusions, haha. I am already planning to ask to drop the perjeta if I have to have infusions, so I can cut down the time at the infusion center. But it is good to have a doctor who seems ready to "throw everything at it" for my benefit. And I'm pretty sure I would be staying on anti-estrogen therapy "forever", regardless
Anyway, thanks again for the good thoughts and I'll definitely be updating. Take care, everyone.edited to add: And, he agreed I'd had a long enough time on Xgeva and that I do not have to continue, so another point in his favor. My previous MO kept pushing me to go back on even though I didn't want to and was planning more dental work.
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olma,
I know what you mean re: cure. Since we don’t actually have a cure for mbc, I guess it means you eventually die of something other than mbc? I actually find that saying I am “cured” is just a disingenuous platitude. It doesn’t comfort me simply because there is no cure.
I have been stage IV for over 10 progression free years and have not had aggressive tx, not even chemo but just because I haven’t had progression doesn’t mean I’m cured. When there is no cure how can anyone say that ? The absence of progression is not the same thing as a cure. I am pragmatic and have always been clear eyed about the reality of mbc regardless of how well I’ve done thus far. Olma, my long term survival has been simply a matter of good luck. I wish you the same and am sorry that I have nothing more concrete to offer.
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Cure or not, it's wonderful when people with this disease can live relatively normal, mostly healthy lives and I support that wholeheartedly.
My primary tumors in my cancer breast seem to be growing (which I described in the Skin Mets thread). I have a mammogram, ultrasound and biopsy scheduled. They can't get me in before June 16th, and I've been on edge since last week, so it's an exercise in self-restraint. I'm sad because Taxol was working on my mets and it looked like I was going to have a nice run on that treatment.
Just getting these diagnostic tests scheduled was so difficult, with so many phone calls between my oncology office and the imaging center, and a reminder that I'm dying alone with no one to hold me. And no one to make these phone calls for me. No local support group, either, so no one who "gets" cancer, that I can talk to.
My imaging tests have been mostly CT scans. But this time I will have to take my shirt off for the ultrasound wand and biopsy. I have so much shame over my mangled, sore-covered breast. I can't stop the paranoid feeling that medical professionals are judging me, and thinking I'm some kind of kook who lets nature take its course. I'm so nervous about this appointment.
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Yes, of course it’s wonderful when we can live fairly normal lives with mbc. I’m a bit of a stickler when it comes to language, specifically accuracy, so that is why the term curative intent irritates me. If there is no cure then curative intent is meaningless. As far as I can tell, long term survivors are just very fortunate with no rhyme or reason for their survival.
Lest anyone think I’m being nit picky or negative, I am one of those long term survivors (10 1/2 years, no progression). I am frustrated by the fact that no one knows why I have done well. Yes, of course I am happy for my good fortune, but I wish there was some way that my situation could benefit others.
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Exbrnxgrl
I like the word curative intent. To me it means they will not give up on you. The word intent is the key. Intending to do their best to cure you not give up on you. It’s much better than Pallative which I do not like.
I’m happy to hear the success stories give me hope. I feel once in awhile when there’s a pain it’s spreading through me. This month I’ve had a lot of those pains. I’m getting them checked out. I just had scans that were good but I’m only five Months in everything scares me.
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Nine twelve, i am so sorry you are having to go through this. Please, do not think or worry about how your skin mets will be perceived. The truth should be evident to any of the providers from your medical records and even if you were “at fault” I would hope people in the health field would have enough compassion and empathy to be kind even to those of us with off beat ideas who refuse or postpone treatment out of fear or whatever reason. In fact, I was 59 yo when diagnosed and had never gotten a mammogram and no one judged me…the surgeon asked me the question about mammograms and she said dont be afraid to tell me, I am not here to scold you. It is NOT your fault! When I reported for this last appt with the new doc, my chest was rather covered in red mosquito bites and I had a v neck so they were visible, he asked me out of concern in a kindly way what was going with that rash and I told him they were itchy and were likely insect bites. That was that.
Also, I read your post in the skin mets thread and I so agree with you about a lack of breast exams from oncologists when we are stage IV.
My first onc would examine me at the beginning of treatment because I reported that my very palpable tumor was shrinking. But I always had the feeling she didn’t like touching her patients (hopefully it wasn’t just me) she would touch me very gingerly. As treatment went on, she stopped giving me manual exams. The next cancer center I was treated at made me see the doctor or the NP every three weeks when I reported for my medication and still, the doctor never touched me and the NP gave me a manual exam a few times but never touched my breasts, just checked my ankles for swelling, my abdomen, listened to my breathing, etc. They did refer me for a mammo 2 years ago because I asked about it.
This new doctor gave me a full breast exam - another gold star for doctor dreamboat hahaha. But yeah, we are still walking around with breasts, they should be part of the exam and the imaging too.
I always have had PET scans but I was told as good as they are, they still are not the optimal modality for finding small cancers and not the optimal imaging modality for breasts. I hope the breast imaging helps you get a good plan in place to deal with the primary tumor and see some improvement.
Please reach out to us here whenever you need to talk - we are the people who get it!
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DDIL,
My hang up is purely semantic. I simply can’t get my head around the intent to cure something for which there is no cure. My medical practice has never used the phrases curative intent nor palliative care. My treatment was not at all aggressive yet I never ever felt like anyone was giving up on me. Though not quite an oxymoron, curative intent reminds me of one. Although my argument is based on semantics, using the term curative intent implies there is a cure. There is no cure just good luck (without good reason) for some. My bachelors degree is in linguistics; no surprise!
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Thank you, olma, for your response. It's good to know that other patients have had that impression: that our oncologists would rather read a report about our palpable lumps than touch us.
ExBrn, I hope you don't think I was in any way suggesting anything other than that I am glad of your continued good health. Relatively speaking, since you still live with this disease that has taken so much from so many. Long may you (and all who are like you) thrive.
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So, just to put a fly in the ointment - I wonder how different it would from telling lower stage bc patients that they're "cured" when there's a 30% recurrence rate, and they don't really know why/who will recur (at least that's my understanding). So, how is that cured? OTOH, if we accept that the 70% non-recurrence is "cured", and if progress in treatment consistently beats back recurrence in MBC to that 30% rate, why not call it the same thing? (The key word here is consistently.)
I think it would be great to get to that point, and I think it will be decades before they can claim that kind of achievement.
I'm not trying to stir the pot, just musing.
Regarding clinical exams, my GYN did one after my dx. I haven't had another one since. It doesn't bother me. The tiny lump that was in my breast was located so subtly that I'm almost certain the mmg wouldn't have found it, except for the reference on the PET-CT. My concern is my liver and that's never been noted in a clinical exam. I wonder if some docs don't do them out of consideration for our feelings - or feeling that our routine imaging is sufficient.
MinusTwo - Thinking of you while you wait for your scans. Please don't worry about what the technicians think - that's their problem, not yours.
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seeq - i think its a good point, earlier stage is also treated with ‘curative intent’ - the intent is to cure but no guarantees and some people can’t exhale or feel out of the woods until many years pass. If Stage 3B or 3C can be considered “curable” then some MBC may also be curable. Yes, it will be great when we get to a place where 70% of MBC are likely cured, we sure aren’t there yet but we never will get there unless some researchers and clinicians believe “cure” is possible.
About “palliative” I was never told “this is palliative care” but it was written in my chart, once i got to see the chart notes, it said Intent of Treatment: Palliative. when they say “this is treatable but not curable” that is what they mean.
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ninetwelve, I’m sorry you’re going through this alone. Is there any way you can join one of our Zoom meetings? We are all so supportive of each other and really are there to help each other. Please consider it. Hugs
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olma,
That’s the definition of palliative care that I was given. At no time have I believed that it meant giving up on anyone. My problem with the word cure is that it implies a consistent remedy that helps most people with a given medical condition and eliminates the condition itself. That currently does not exist for mbc. What we do have is a small percentage of outliers who through no singular or consistent tx/procedures survive for unusually long periods of time. That is not a cure IMO but simple good fortune for a minority of those with mbc.
I do not consider myself cured nor does anyone on my medical team and it doesn’t bother me a bit. Someone on bco once mentioned that I was likely cured. Although I appreciate the optimism, there is simply no way to know that. The small percentage of mbc patients who do well for years while receiving a wide variety of different treatments does not merit the word cure. Luck, yes, cure? Not yet. Heck, perhaps this is just a semantic argument. Cure? Sure, bring on the cement and meats 😉!
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We had a topic on curative intent started back in the fall. I am trying so, so hard to understand it but I simply can’t wrap my head around aiming to cure something for which there is no cure. I do like precision in language 😊.
https://community.breastcancer.org/forum/8/topics/880360?page=10#post_5718107
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NineTwelve - anecdote to maybe make you feel better, but at my cancer they often have women which, due to cultural reasons, arrive with very large, open breast sores due to not reporting breast changes earlier. My wound care nurse mentioned it when I was fretting about my (comparatively easy) dressings change. She didn't say it in a negative way, just that these things happen and they are challenging from a dressing perspective but they do their best to help and heal the patient. You've been in active treatment for a long time and oncologists know that cancer does its thing, just like we know that.
I get that it can be embarassing, I hated showed my heavily retracted nipple as I felt like it made me look like a failure in self care. But for the doctors to make the right calls they needed to see it and touch around the tumor and so I had to put my feelings aside, no matter how hard it was.
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Nine twelve, I get frustrated with scheduling, too. The cancer center I use built a new $78 million dollar cancer wing touting many upgrades but they lost some personalized care and it's been more challenging to coordinate appointments.
Your feelings about disrobing for an ultrasound are understandable. I agree with olma that most medical personnel are compassionate and non judgmental. I hope those are the ones you encounter when you go. Chances are, they have seen numerous or many similar cases as yours in their line of work making them well versed on the effects cancer has on the human body, regardless of treatment. Cancer does its own thing which is one reason it strikes fear in people.
Interesting comments about doctors examining breasts. My first onc gave me a breast exam every time I went in, at least four times a year. I sat on the medical table and put my hands on her shoulders while she palpitated them, checked my scar, check my lymph nodes, had me lie back on the table and did a bit more examining. She retired after ten years and the new onc does none of that. She will press on my my hands and feet since the oral chemo gives me hand foot syndrome and sometimes pokes my belly. I don't get any feeling that she doesn't want to touch me. She's much younger than my first onc and probably trained differently.
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Tried to work up the courage to join the MBC zoom chat, but overwhelming anxiety won out. I'll try to join next time, which I think is Monday. I hope everyone else is doing better. What is horrifying me right now is that my nipple, which was completely retracted inwards, has come back out, and is swollen to twice its former size. I don't get my scan for another full week.
edited to add: Called my oncologist and he is prescribing an antibiotic, on the assumption of mastitis, and he said he would see if the mammogram, ultrasound and biopsy can be done sooner. About to go to my acupuncturist and pick up the meds. Feeling a bit calmer now.
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Gosh, where is everyone?
I've been used to posting under my treatments, these last 7.5 years here at BCO, but I'm not on any treatments right now as I wait for my next scans (tomorrow morning. I'm a mess). And when not posting under treatments, I posted under the diagnosis: Bone Mets, Lung Mets, Liver Mets. I have the mets, but they seem like they're managed. De Novo is definitely my diagnosis, too, but it's a small group and not getting so many posts at this time.
Is there somewhere that gets daily traffic? I noticed the My Life, My Husband thread and I've been following along, but I don't have a husband or kids. I remember there was a Hermit thread, but ironically it was mostly married members posting.
Maybe I need to stop focusing on what makes me different, and be more about what we all have in common. I hope everyone is having a good day. Tomorrow I have a mammogram, ultrasound, and guided biopsy. Here's hoping for good news, and if not good news, at least a clear scan that shows us what to do next.
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ninetwelve, I don’t have kids and others on the my life thread don’t have either, it’s more about the my life part anyway. Also, if the zoom group seems weird to jump into, you can always join without video and listen in until you’re comfortable but I assure you, it’s pretty casual.
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Hi NineTwelve,
I’m new to this thread but also de novo with Mets to liver. I too worry about my cancer breast but Iwas diagnosed in 2020 and it looks weird already! Wishing you the best with your tests tomorrow and sending you good thoughts!
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ninetwelve,
I empathize with you! I am just about to hit the 11 year mark but it has left me a bit alienated from bco. Since my surgery and initial tx were over a decade ago I feel that my experiences are dated. Same with my tx which has been AI’s only. Never had chemo, my mo doesn’t do tumor markers and I only see my mo every 6 months and only scan annually. I did participate in 2 of the stage IV Zoom meetings but again, I really have nothing to contribute that is relevant to most. Even rads was different for me! No rads to breast area, just rads to my bone met.
Being an outlier is fine but I do feel like I don’t fit in anymore. As time goes by I just feel like I’m onsome oddball mbc island. Again very grateful for my great luck but but I do feel like an odd duck (rhyme is intentional!)
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ninetwelve: I go to "My Life....." thread more frequently than the others. I have a husband, no kids, retired. The thread title is just an open invitation to join us in Mel's living room. You can talk about anything there.
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