I’ve been doing well on a combination of 125 mg palbociciclib, letrazole and monthly denosumab for 12 cycles after 11 rounds of weekly paclitaxal chemo. I have a definite met in t10 and suspect mets throughout rest of spine and had 19/30 positive axillary nodes removed. No obvious sign of lung liver mets on Ct contrast .
Question 1 What types of scan work best for detecting pleomorphic/aggressive lobular spread. Are PET scans better this better for detecting metastatic spread of pleomorphic lobular types with typical spindle single cell strands. When do they tend to be used I say this because the breast tumour originally thought to be 1.7cm with Mri contrast was actually 8-10 cm. Originally had mri contrast but now just have plain mri and Ct contrast.
Q2 I’m told my cancer markers and tumours appear stable which is great. Do others of you ‘routinely’ get cancer marker info as part of your 3monthly blood testing and scan results or do you ask for this info?
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bikebabe
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Congratulations on your stable results 👍. Q2: I don't know about others, but I do yes. Q1: I'm not sure, my Onc usually has me do different tests at different times depending on how I'm feeling or if I'm having problems. So far, I'm just doing MRI & CTs.
🤣🤣🤣👍 yep that's why I chose it. Lonely Mountain is good too. I'm not as grand, having one gone made wearing bras awkward until my mom told me her solution (she was able to catch hers early & just needed a lumpectomy, but still had trouble with bras (DD) so she started wearing sports bras. It works! They're comfortable, they fit snug, & adapt great to the imbalance (for some reason I just didn't want the replacement stuff so I could look "normal".)
I've been in & out of the ER. My body reacting to the chemo drugs. They run the gambit between chronic vomiting and last week was chronic diarrhea (didn't go to ER this time). It just suddenly stopped Friday night. My Onc. wrote me a prescription for antibiotics anyway 'cause the sample I left the following Monday had WBC in it. I've been trying to get on SNAP, Medicaid, Food Pantry. A lot of up at the crack of dawn, running around town, correlating resource documents trying to get together proof of need. Aaaaagh!😖😫Thanks to a Walmart 401K I may not be eligible for Medicaid, but maybe The Medicaid Savings Plan (whatever that is) anyway, I've been too tired to visit. Sorry, but I've been reading some of the posts. I don't want to work anymore, but this past week has been a drag & more than a little exhausting.
For question 2: My cancer markers track my progress (or decline) very well so I look for their measure every chance I get. Other people say that theirs are not accurate so they (or their oncologists) don't bother with them.
Question 1 is much harder! I googled "pleomorphic/aggressive lobular" and was directed to this article you may find of interest:
Research article: Breast Cancer Research volume 23, Article number: 7 Open Access published 13 January 2021:
"Targetable alterations in invasive pleomorphic lobular carcinoma of the breast"
"Invasive pleomorphic lobular carcinoma (PLC) of the breast is a subtype of invasive lobular cancer which compromises approximately 1% of all epithelial breast malignancies and is characterized by higher nuclear pleomorphism and poorer prognosis than classic invasive lobular cancer (ILC). Since PLC is more aggressive than classical ILC, we examined the underlying molecular alterations in this subtype of breast cancer to understand the possible benefit from targeted therapies."
"Overall, our analysis of PLC found that 28% had activating ERBB2 mutations, 21% had ERBB2 amplification, and 49% activating PIK3CA mutations. Among cases from our institution, we found 19% with activating ERBB2 mutations, 25% had ERBB2 amplification, and 38% with activating PIK3CA mutations. In data from TCGA, 32% had activating ERBB2 mutations, 19% had ERBB2 amplification, and 55% had activating PIK3CA mutations. While classic ILC in TCGA had similar percentages of PIK3CA alterations compared to PLC, activating ERBB2 alterations were exceedingly rare, with no activating ERBB2 mutations and only one case with ERBB2 amplification. Interestingly, in further examining TCGA data which included FGFR1 and PTEN, 94% of PLC had alterations in ERBB2, FGFR1, or the PI3K pathway."
Conclusions: "Our results show a high frequency of ERBB2 and PIK3CA alterations in PLC and suggest all PLC should be tested for potential therapeutic targeting."
I concluded from this that it is important that your tumour samples be tested for these specific mutations.
In response to your original question - according to the Cleveland Clinic online, "PET scan images can detect cellular changes in organs and tissues earlier than CT and MRI scans."
hi cindy - many thanks. I’d clocked that article too and it made me think that alpelisib would be one solution for the pik3ca but docs disinclined to do genetic testing and say they will change treatment if current treatment starts to fail. I was trying to get ahead of the likely trajectory but without genetic tests it’s hard and cannot find anywhere that does them. I’m thinking scans not sensitive enough to pick up spindle form. I must remember to research treatment for erbb2 mutatations.
GeneDx in NY did mine. Expensive, but comprehensive. Once I payed the bill, I got back a packet that you had to use both arms to hold. I couldn't read the thing, but my Onc explained some of it.
Hiya - Thankyou. Curious to know what it told you about your genes? Have the results changed your treatment? I looked up your bio and saw you have issues with your hips too. I had my left side done on my 43rd birthday. Best present to myself ever and still going strong. I feel so fortunate being in uk where treatment is free.
I don't remember the whole conversation, but basically, I had a 90 something % chance of developing cancer. Or as a friend so exasperatingly put it, "Jeez! The universe just sort of put a gun to your head & said say when!". LolAnyway, my first Oncologist used the GeneDx report to consider a treatment path & the next two have pretty much been following his guidelines with variations depending on my progress, how I'm feeling, et. (Original Dr. Left his group practice & started with another group because he didn't like the Hospital group that took over the Cancer Center. I would have followed him to stay with him, but I didn't find out about this until later after my mastectomy had healed & I was ready to begin my chemo treatment. I just finished my radiation treatment when the rad Dr. informed me that my current Onc was gone. The Center assigned my current Onc & she's been doing a good job. I have no complaints.) It was just a report on genetic markers & a lot of Latin & Greek words so I'm not joking when I say "it's all Greek to me." But you can laugh anyway.
Free!!!? Maybe I should move. Yes! I had enjoyed 20 yrs of pain free life after 35 yrs. of agonizing pain every winter or anytime I tried to walk more than a few blocks from my house. A 1/4 mile walk with my mom to the grocery store after I hit puberty always brought me to tears. My only issue now is I need revision surgery on my right hip & the Dr. who did the original surgery has long since retired. I was 35 when joints were replaced & normal walking & working wore the plastic lining out after 20 yrs. I'm having trouble finding a dr. who specializes & is covered by Medicare & Medicaid & is local, not 300 + miles away, in another state / country. I'm poor, live under the poverty line collecting SSDI (Social Security Disability Insurance) eating from Salvation Army food pantry, trying to find a an apartment in the $500 range in an economy where cheapest rent now is av. $700 - $1,000 (I can no longer afford this apartment $685). Insurance is the big stumbling block. Should have been having this operation 1 or 2 yrs. ago.
that sounds like a real tough set of challenges. I know the USA system is bad especially if you’re not in work and that Medicare is basic. I hope you do find some affordable safe housing and a good orthopaedic surgeon to get your hip sorted, and that you’ve got heat/food to keep strong enough through the winter. NHS staff are now striking as they’ve had enough of being underpaid and undervalued and seeing workloads soar. My daughters a midwife and they are grinding her into the floor. They get paid less than half of what usa nurses get.
😱 ouch! That's gotta hurt. & It isn't fair to them or their patients. The powers that be gotta go. I don't know if English people can vote a bad party out or not. We have to do it piece meal (a Senator here, A House Representative there. The worst part is the DINOs (Democrats In Name Only). They're too much like Republicans & the Repubs. have gone radical. There aren't enough truth- to -power decent Independents to win. They came close this time in 80 years of campaigning though. 🤞 in 2024.
Hi there, glad to hear that you are in a stable place with your metz, that's always great news. For your first question, after doing the rounds with lobular for 11 years, 3 of those as metz, I have done a lot of research on imaging, medications, etc. I just read a fantastic article and reaffirmed what I had already come to learn, PET scans are the "Cadillac" of scans, but not for lobular. FES PET scans are best if you are ER+ (but cannot be done while on Faslodex), and also, F-Fluciclovine PET scans are better than the standard FDG scan. Lobular is a slow moving cancer and does not react as readily to sugars, but seems to react better to estrogens (when ER+) and to amino acids ergo F-Fluciclovine PET scans. WB-DWI (Whole body weighted diffusion MRI's tend to show progression well as well.
As far as your question on markers. It all depends on your body. Everyone reacts differently with markers. Some people have sky rocket high markers with very little cancer. Others have little or no markers with huge amounts of progressive cancer. Others, like me, have cancers that follow the markers pretty accurately. Since lobular is hard to scan, having synchronous markers is a blessing. So far mine have been very accurate with progression. One of the areas that lobular likes to travel to and take hold is the visceral regions of the body. These are areas that are almost impossible to scan with any kind of scan and get an accurate reading. I went from bone metastasis to stomach/colon. My markers kept going up, and I got clean PET/CT/MRI's every three months for 2 1/2 years. My doctor finally asked that I get a colonoscopy and endoscopy, and there it was gingerly growing along....damn!! So now my new test is the endoscopy to keep on eye on growth, as the scans are useless at this point with the areas it has taken over and being lobular. My markers are taken every month with each visit to my oncologist's office and we discuss the results at each visit.
I hope this information is helpful to you. Wishing you the best. It's a tough road. Take care!
thank you so much fiercefighter . You’ve researched it really thoroughly and it was really informative. I wish you the very best for your ongoing health and well-being whilst managing the colon crap and bone mets. My pleomorphic type of lobular is unusual in that it behaves like aggressive and fast growing ductal. Pleomorphic means mixed so it’s spindle like lobular but fast like ductal. Worst of both. But I’m still smiling. Not sure about sugar uptake but guess it does as I’m always wanting to eat sugar!! Trying hard but failing miserably at present to cut it out!
I’m hoping, praying and wishing the best for you. Sometimes I think doctors lump all categories of breast cancer together, and the protocols seem geared toward ductal. Fight on, and as you said, still smile, life is only what we have in this moment. My cancer has grown much faster than anticipated by all the doctors. I started at stage 1 - 0 and somehow still managed to get here even with early detection, and aggressive treatment. Still fighting, not so much for myself but for the ones I love. Anyway, wishing you the best, take good care!
I think Fiercefighter covered it well. I’m like you Bikebabe sane situation. I also have have lymph involvement. I had a FES PET in April and will get another one in December. I get CT and bone scans in between. Glad you’re doing well hoping for the same on my December scan. I also get tumor markers checked monthly. They have been a good indicator for me. CA27.29 CA15.3 but I heard the CA125 is good for lobular.
thank you DDIL1. Wish you well on your journey. The pleomorphic is a canny little tumour. It’s looks lobular ie spindle single cell but behaves like very aggressive ductal. I had a small r sided ductal in dec 2019 with no overt sign of disease in left side. Within 15 mths they found a 8-10 cm mass in left breast with 19 positive nodes. I think I’m still in denial hence my normal ‘mood’. Question - are your pet scans for non bone metastases as it’s these that I worry won’t be picked up by ct contrast? Results of each spinal Mri without contrast are different each time with radiologists highlighting different areas of concern in spine that are then not reported on the next scan (despite asking). Originally I did have mri contrast but radiologists adamant that mri contrast is unnecessary and they overrule oncos. I can’t deduce from evidence whether that’s right or not as so little known about pleomorphic. Just that if mri contrast didn’t pick up an 8cm mass in breast then unlikely anything will be seen without contrast on spinal.
I worry things will be missed due to its appearance. I had a small chickpea size tumor on my right breast and 4 nodes under the arm. No surgery. ER/PR+ HER-. Grade 2. I had a recent endoscopy all was ok. I request the FES, then I get the normal CT/ bone for bone Mets. I’m going to go get a colonoscopy next. I think we have to stay on top of things with more in depth tests. I also had two brain MRI with contrast, because I do get bad headaches- but I have a history of migraines. I also requested a sinus scan as I was getting frequent sinus infections.
I think for us we will always have to be vigilant in different scans to stay on top of it. I am DeNovo, lobular only. But Phlemorphic, I have my Mayo appointment coming up and I want to discuss that sub type with them. I do have a CHEK2, BRCA2 mutation. So there are additional treatment options. I’m also in the Serena6 clinical trial where they continually check for a ESR1 mutation. I have the same issue with radiologists reports they all read them different but the oncologist then interprets it different again. Im going on 11 months since diagnosed and hoping things are getting stable.
I'm glad your tumor markers and tumors are stable on your current protocol. I also have invasive lobular carcinoma that spread to the ischium and sacrum. I have been on Ibrance 125 mg and Letrozole for 2 years now and also have had stable scans and good markers. My doctor orders a PET/CT scan and bloodwork to check for CA27-29 as well as CBC and CMP. When I was originally diagnosed with MBC I had a CT scan, bone scan, MRI and bone biopsy to confirm the metastases. Now, she relies on the markers as well as scan results to see how I am doing. She has. now pushed my scans to 6 months out instead of 4, but I will still have bloodwork and a visit with her every 3 months.
hi Bonnie. I am in US but the cancer center I go to is moderate in size and they do not have a PET/CT. I get full body bone scan and regular Ct Scan every 4 to 6 months. I guess I am not getting the appropriate standard of care. that bothers me. thanks for the fyi. carole xo
Gosh your understanding plus the replies you received are above my pay grade! However, I am more than happy to know some bright people are on the job with their treatment(s) and I can gleam some helpful tips and information!
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