recurrence after stage III TNBC?
Comments
-
Ithink they feel that because I had neoadjuvant chemo, mastectomy, radiation and then Xeloda, there’s virtually no way the cancer could be back.
My cancer was aggressive though. It grew to over 6 cm in just a few months.It almost doubled in size on Taxol. I had a 3 cm residual tumor at my mastectomy. The margin was less than a millimeter. Radiation should then have theoretically destroyed any tiny cancer cells that might have been remaining after mastectomy. But I’m not really in a position to say it definitely killed every single cell.
Medical professionals look at numbers. I get that statistically, these doctors know the chance of me having a recurrence is super low. But it’s not zero. Radiologists especially tend to act like it’s zero.
0 -
pesky, as we all know there are people with a pCR who will recur anyway... 10% in the first three years.. It's great your team is confident about your treatment, but I would NOT call the chance of recurrence super low-- it is TNBC, the most likely to recur. My doc said that the only patients he has had who have recurred have recurred within three years. So it comes back fast, if it's coming back.
I think you should push for a biopsy, and demand a reply as to why they refuse to give you one. Corner them in such a way that they are on the record. That might goose them to take it more seriously.
Unless there is a negative, like a risk to you of a biopsy, it does not make sense to me they wouldn't want to rule it out.
0 -
I know triple negative is more likely to recur. I guess I meant my chance of recurrence is really low because of all the treatment I've had. Neoadjuvant chemo shrunk it to 3 cm and then I had a mastectomy that supposedly got all the remaining cancer with a margin of just under a millimeter. Then I had 6 weeks of radiation (with 2 doses of cisplatin...was supposed to be 4 but I had to discontinue because of the SEs). And then after ALL that, I did 6 months of Xeloda.
I know like a million cancer cells can fit on the head of a pin, but still, after all that treatment thrown at me, I know they feel it's very, very unlikely anything was able to survive.
I am a bit perplexed by all of these sudden bruises on my thighs. It looks almost like I've been pressing my fingers into my skin and it's causing bruises. I'm not, unless I'm doing it in my sleep. But these are places on my body where it's very, very unlikely I've bumped into something. I don't bruise very much, so to have like 6 small bruises all of a sudden on both thighs is weird for sure.
The last time I had my blood work, on January 8, my WBC had dropped back down to just a touch below normal (3.8 - normal low range is 4.00). Other than a consistently rising ALP (was never high during chemo but has been rising by about 5 points every month, is currently 171 - normal range has a high of 136) all my other blood work was normal. I'm actually finally in the normal range for RBC for the first time in years!
0 -
Bruising could be from platelets being low. If you've taken aspirin lately, or tumeric, that can also cause it.
I had a major teaching hospital, one fo the most respected nationally, tell me that my recurrent cancer "was certainly just some cells left behind", even though I'd had chemo, surgery with very wide margins, and and was on hormonal therapy, and was node negative. They refused to test to see if I responded to Tamoxifen, even when I said I'd pay out of pocket. They also refused to do oncotype or consider chemo. A local oncologist ordered oncotype, and it was very high. Only then did the other cancer center agree that chemo was necessary. Had I not pushed it, they would not have done chemo. Even the best, most respected hospitals do not have all of the answers, and when what you request does not fit into their "standard", then they are not always willing to be flexible. If you don't get anywhere requesting a biopsy, then ask for a second opinion elsewhere. Ask people locally who've been affected, who they'd recommend.
0 -
Interesting. My platelets on January 8 were actually up a bit. They were 199, where they were 163 on November 14. So they are on the lower end of normal (range is 140 to 400) but they are normal and have risen a bit.
I was actually just recently offered to participate in a 5-year long clinical trial of aspirin for breast cancer but opted not to do it, so I haven't taken any aspirin or tumeric. (The last time I even touched tumeric was when I made my own face mask with it a few months before I was diagnosed, after reading that it is useful in lightening dark spots on skin, lol.)
I actually have not taken any medication whatsoever in many months, other than a little Xanax and melatonin some nights to help me sleep. I don't even take Tylenol anymore, because I know it can raise ALP levels and I really want to get a true idea of my ALP and know it's not being affected by anything I'm taking.
So I have lots of bruises and bone aches but I'm not too worried because I don't have any consistent/persistent bone pain. The ribs are tender to the touch in a few spots and I have an ache the middle of my spine that could just be from not having a properly ergonomic chair to sit in while I work.
The bones that actually hurt are not bones that typically are affected by metastasis anyway: the top of my left foot has been hurting a lot. My right ulna (lower arm) has had a ton of tenderness. And my right tibia (lower leg) has had a little aching. I read bone mets typically affect ribs, spine, upper bones of arms and legs.
So I'm chalking these aches up to the past 18 months of treatment where my body was just really put through a lot.
The notes say the lump that is close to my original cancer site is between the rib and the implant, but the NP on Friday commented that it almost felt like the lump was on the rib. But I had X-rays on Friday and nothing showed up at all.
My concern is that it was not even seen on the ultrasound on January 10. And when I say that, I asked the radiologist who did the ultrasound to clarify if she meant she saw nothing of concern or if she literally saw nothing and she said, "I literally don't see anything at all." If they don't see anything on this ultrasound coming up on Wednesday, what could that possibly mean? What kind of lumps can be felt but not seen at all on ultrasound? Even if it was just normal tissue that clumped up, it should be seen as a clump of normal tissue, right?
0 -
1. plenty od stuff can't be seen on certain imaging tests. That's why they seem to need so many images... US misses some, MRI misses some, and Mommo misses some but together the picture is pretty accurate.
2. Melatonin is actually good against cancer so I would not hesitate to take that! I take 20mg every night and I have zero truoble falling asleep on my own. I take it for the anti cancer properties.
3. Maybe besides getting to the bottom of this w a biopsy, you should have a consult with a naturopathic physician who can give you guidance on what you can take vs what you should not re ALP?
0 -
Well, I had a breast MRI and the only thing that was really noted was some enhancement on the left side (where I feel a spot of pain on the sternum or the edge of the rib). That was chalked up to the implant. Otherwise, it said no suspicious findings. Nothing seen on an ultrasound and nothing seen on rib X-rays. So we'll see what happens on Wednesday.
I didn't know melatonin was good for cancer but now I'm glad I started taking it. I'm not too worried about the steadily rising ALP since it's only up to 171 right now. If gets up to like double or triple the normal then I'll be concerned. I think 25 points out of range is probably nothing to be very concerned about. If it were rising due to bone or liver mets, it would be much higher, wouldn't it?
0 -
One of my doctors who examined my lumps said she didn’t think they were anything to worry over because ‘you’ve had so much chemo’
I had a trial, neoadjuvant chemo (not Pcr), surgery w/clean margins, more chemo, 30 rounds of rads. I had a lot of treatments and it still recurred while I was getting radiation to that area. Don’t let them talk you into complacency. That’s how I ended up at stage 4 and am now chemo-resistant.0 -
I'm so sorry for those of you who had progression. That's the only reason I'm pushing this, because in my life before cancer I had the luxury of just putting things off, but post-cancer, I don't have that luxury anymore.
Parrynd1, can I ask what your recurrence lump(s) felt like? Size, shape, location?
I didn't respond at all to Taxol - in fact, my tumor grew a lot on it. I thank God every day that I did neoadjuvant chemo, because if I had had a mastectomy first and then was put on Taxol, I would have had no way of knowing it wasn't working.
I only had a partial response to neoadjuvant AC. And I had to be taken off adjuvant cisplatin because of bad neutropenia and tinnitus (which I still have after only 2 doses over a year ago). So I didn't really have a "home run" with any of my chemo experiences and even after all that and 33 rounds of rads, I would definitely hope to catch any recurrence as early as possible.
I was classified stage III due to the sheer enormous size of my TN tumor, but didn't have any positive nodes. So I think that makes my doctors feel more confident that it didn't and won't spread. Even though node negative people recur all the time.
0 -
My original tumors were at 10 o’clock and 9 o’clock. Recurrence tumors felt solid and weren’t too deep. They say at 12 o’clock by my arm pit and 10 o’clock (10 is the one that keeps hiding on the scans and is more by my arm pit) are the recurrence tumors. I never got a biopsy till I had a 2 week long headache which lead to MRI discovery of brain mets. Surgery confirmed TN in the brain THENbreast biopsy confirmed those were a local recurrence. My MO is sending me for a breast MRI to see what that tumor & others are doing since no imaging has found it to date even though we clearly feel it/them. I was stage 3, but found to be microscopic node positive from my breast surgery.
I feel you on the chemo front. Nothing has been working for me. I start Gemzar & Cisplatin next week...hopefully it works and SE’s aren’t unbearable.
0 -
My lump that hasn’t been seen on imaging is also at 10 o’clock. I wonder if that’s just a harder area to image. It’s kind of tucked away and the rib meets the implant there so it’s a crowded area.
Parrynd1, so you never had symptoms of the bone Mets? I can’t imagine how you felt getting the Mets dx. I’m so sorry.
My mid back and tailbone have been aching for the first time ever. As well as my left hip, and my left thigh has all these random unexplained bruises. It’s been about a week. At 44, I feel like my body has aged so much. It’s hard to know when to be concerned about new bone pain because now it could all just be aging.
0 -
At 44, I do not think it's aging. I am fifty seven with no pain in my body. Indeed, I used to have some aches and pains but since getting on to of supplements and diet, the aches departed. I think a lot of those random aches must have been inflammation and when I brought down inflammation they went away.
Have you reported your bone pain to your team?
0 -
I wouldn’t normally think it’s aging at 44, but having almost 18 months of various chemo (with rads thrown in between) has I’m sure aged me.
I have reported the new aches and pains and am having a bone scan in addition to the ultrasound tomorrow.
But I just had a bone scan on September 21 and it was negative so I doubt this scan will show anything either. Not sure how fast bone mets can appear
0 -
pesky I am so glad you will get scanned. Please keep us posted.
0 -
I suspect bone scan will be fine. My original bone scan when I was first diagnosed in June 2017 showed a spot on my left hip. It was determined to be some kind of benign bone lesion, I forget the name. The bone scan I had in September 2018 didn't even show that. I'm surprised, as I didn't think bone lesions went away, but I guess it did.
0 -
Pesky I definitely think depth makes a difference. Even though my lumps could be felt during the mammo & US they still couldn’t get images of it. Fortunately I don’t have bones mets for now, but I do have skin mets on the bad breast, brain and lung mets. I may have mistyped. I can’t see too well so my bad! Chemo can cause all sorts of weird things in your body even after stopping regardless of age, however you know your body best. Relief that that lesion went away...one less thing to worry about being cancer.
0 -
Well, I’m assuming that hip lesion went away. Nothing was ever said about it beyond the initial scan in June 2017. My first oncologist (who I hated) said she wasn’t going to look into it further and she didn’t really even believe in scans because they show too much incidental stuff. So the initial radiologist who did the scan wrote that the spot on my hip was “likely” some kind of benign thing (wish I could remember the name), and the spot on my liver was “likely” a cyst and the spot on my ovary was also “likely” a cyst.
I sometimes wonder if I had any mets originally that went away with all the chemo I had. But that’s probably silly.
0 -
It’s possible, but it sucks your original MO didn’t care to investigate further. I could see if there was 1 spot but 3 probably ok spots seems to warrant looking into imo. Either way they are gone so that’s good
0 -
I don't know about the liver and ovary spots. I'm actually not even 100% sure the hip spot is gone since I didn't see the full report of the bone scan from September. And the original bone scan was done at a different medical center so they didn't have it to compare. (Yesterday I called the original place and asked for a copy to be sent to my my new oncologist so she can compare it, and so she will know those things were seen on my hip, liver and ovary when I was first diagnosed.)
The bone scan from September 2018 just says “no focal abnormal areas of increased activity to suggest skeletal metastatic disease." That's what I can see on the patient portal. I have never seen the full report. I assume it HAS to be more in depth than that.
I can't recall if the June 2017 was a bone scan or something else. Does a bone scan also see any abnormalities in the organs? Will it see spots on the liver, or even this lump I currently have on my breast? Will the dye cause those to light up too, or does the dye only get taken up by the bones
0 -
pesky I think it's smart to have your current MD reassess everything. It could be those were mets, although my MO told me that many people have tiny spots that mean nothing (I had a tiny spot in my lung that they did not think was problematic).
0 -
Thanks. I just want her to have the original scan as a baseline for comparison. I always think the more information the better.
0 -
Just had the ultrasound and had the dye injected for my scan in a few hours. The woman who did the ultrasound said she was going to ask if there were any more pictures needed, and a few minutes later, she came back and said the radiologist didn't see any cause for concern.
So it at least seems like they actually saw something this time, as opposed to three weeks ago when the radiologist insisted there was absolutely nothing at all there.
I couldn't see the screen but heard lots of beeping like when they are marking the length and width of something on the screen.
Bone scan in a few hours...
0 -
crossing fingers for you
0 -
Thanks! I'm so glad she seemed to be measuring an actual "something" on the ultrasound. Not that I want anything to be there, but I will at least feel vindicated that there IS a lump there!
0 -
Hi, i’m sorry to see that you’re still dealing with this! I hope today’s scans bring you some clarity!
0 -
They have standard things that they mark every time, so do not try to read into what the tech did or did not do; I know it's hard to to assume the worst with everything, but do try to assume the best and not take the dark path unless led down it. The fact that the radiologist did not see cause fro concern sounds like good news! Hopefully the bone scan is clear as well. It is really, really hard after all of the surgeries. I have so many new lumps and bumps, it drives me batty sometimes. I try to only "assess things"1-2 times per month though, otherwise changes are hard to detect. And doing that and not obsessing every day is a challenge...I won't lie! Keep us posted about your results.
0 -
KBee, I wasn't worried, I was actually happy to hear her marking things because I know there is a there and I felt like finally someone is seeing it. Art The ultrasound 3 weeks ago, the radiologist didn't mark anything.
The bone scan today took longer than the one I had in September. In September, they did the scan and just said "okay, all set, you can go now."
Today once the scan was done, there was lots of conversation with the radiologist, but they didn't end up needing to take more pictures. But while I was waiting after the scan, two different people came in and told me not to panic of they need to take more pictures. So there was definitely some discussion going on about whether to get more images.
I wish I could remember the name of that benign bone lesion that was found on my left hip back in the June 2017 scan. From what I remember reading about it back then, it wasn't something that just goes away. So it's curious that it wasn't mentioned on the September scan (they didn't have the June 2017 scan then to compare).
0 -
Hoping it is all benign and that you get your results soon. Did they say if they plan to do an MRI of the breast as well?
0 -
No, this was a repeat ultrasound because I had an ultrasound and a breast MRI on January 10 that didn’t show anything. Well, the radiologist who did that ultrasound in January said there was nothing there. The MRI said no suspicious findings. It was pretty vague.
Anyway, I had the repeat ultrasound today because when I saw the NP last week she definitely felt the lump. And the bone scan was also ordered due to the rib pain and the fact that the NP couldn’t tell if the lump was in the breast or coming from the rib.
I’m more and more perplexed about how my September bone scan was supposedly great. I just looked back at my notes from June 2017. The old oncologist said then, and I quote, “there is a benign bone tumor on the left thigh”
And yet there was nothing in September? Bone tumors don’t just go away. The June 2017 scan was done at a world renowned cancer center. I’ve now switched to a satellite location in a little tiny town closer to where I’m cuand so they get their imaging done at the local hospital across the street. I hate to say it but I just don’t trust them as much.
0 -
You know, if my oncologist has my results and didn’t call me today that’s pretty darn rude. The tech yesterday told me the radiologist would be reading my films yesterday and would send the report to my oncologist. Who is in the same building.
I hate when they get so busy they put off giving results to people who they know are already anxious. If the scans are all negative, she has several nurses who work with her who could have called me. So frustrating.
0
