I'm interested in connecting with women who fit the above description. I have been looking at old studies that suggest some breast cancers (especially ER+, HER2-) tend to be very slow-growing. These studies are not discussing MBC as such, but rather early BC. I'm wondering about the various treatments women in my situation have taken, or refused. Please also indicate where your mets are/have been.
Thanks,
Cindy, age 75, with ongoing mets to bones, lungs, and now liver - have only taken tamoxifen to date. Diagnosed with MBC in 2019, early BC in 2006 (stage2/3) - three lumpectomies, radiation, and tamoxifen for 5 years.
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Hazelgreen
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Hazel, I am 75, ER+her2 neg, was diagnosed with stage 1 in 2000, then diagnosed in 2017 with stage 4 with Mets to lungs. Take Ibrance/Letrozol. After stage 1 diagnosis had mastectomy (left breast) and took tomoxifen for 2 years and Letrozol for 3 years. The mastectomy was my choice. The original cancer was .8 mm. I thought I was done. Was told by MD Anderson that I had 94% chance of never seeing cancer again. I was blindsided by it. I have been told that my cancer is slow growing. It's not slow enough for me. Blessings, Hannah
Hi Hannah,Thanks for your reply! I chuckled at your "It's not slow enough for me". Did your oncologist tell you that your cancer was slow-growing, and did s/he say why?
Since your diagnosis in 2017, has there been any change to your lung mets? Have you developed any other mets? Have you only taken Ibrance/Letrozol in the past 4 years? Any plans to change your meds, or try a treatment break?
I'm really wondering whether women of our age with long "metastatic recurrence intervals" should be treated as a separate group...
Hi Cindy(not Hazel),There have been changes. Some nodules have disappeared and others have appeared. Several years before I was diagnosed with stage 4, I had a cat scan for kidney stones (my first car scan). It showed lung nodules. I went to a local pulmonary doc. Eventually went to thoracic surgeon at MD Anderson a few times and then went to one at Moffitt Cancer Center. No one thought a biopsy was a good idea because they were so small and the lungs are like a sponge. They all felt that if it wasn't positive for cancer we wouldn't know if they had gotten the right spot. Then it started growing. They operated then. Found cancer immediately. Pathologist determined it was not lung cancer, but breast cancer. Was shocked me nor any of the doctors I went to even considered breast cancer. My advice to anyone who is not stage 4 is to keep going to an oncologist for the rest of your life. At any rate, every oncologist I have gone to has said that mine is slow growing.
Ibrance/Letrozol is the only thing I have taken. Was on 125mg most of the time but have had to drop to 100 mg. It seems to be working but my neutrophils are still way too low and I am having to take extra time off. My local onc wants to change meds but I cut her off every time she brings it up. Because of my diabetes, there aren't any drugs that I want to take. Quality of life is important to me. But I have learned to never say never but at this point I want to stay on Ibrance.
Your suggestion of a separate group sounds interesting. I am 100 ER+ and 99 PR+. Had I not been so hell bent to start chemo I may have come to the conclusion that it was worth seeing if just Letrozol would hold the cancer back. It would have been nice if my oncologist had suggested it. The original one at Moffitt is retired. I go to Moffitt every six months. The one I go to now said that when Ibrance quits working, I might like to try just falsodex and if it doesn't hold it down then add something. There isn't anyone at my local oncologist office that I would trust to give me falsodex. Plus I have a lot of degenerative stuff on my right side. Sorry, I didn't mean to write a book. Blessings, Hannah
I might fit that category. Original diagnosis in 2006, 3a. Chemo, surgery. Chemo, different Chemo, radiation, then Femara until metastatic diagnosis in 2018 (although I think I had bone pain in 2016. Treated as pulled muscle). Mets to bones, ribs, liver, lung. Been on ibrance and Fulvestrant since april/ may 2018. I am 73.
Hi Troutgal,Thanks for your reply! It seems that you too had a long "metastatic recurrence interval" of up to 12 years. We seem to have the same mets now. Did your liver mets come later than your bone and lung mets? Has medication served to shrink or otherwise control your mets?
From what you wrote, it seems that you were on femera (letrozole?) continuously between early BC and MBC. Have you taken any bone medications at the same time? Any other thoughts about what has helped you most? Do you see your cancer as "slow-growing"?
My mets were all diagnosed at the same time, however, since I had what I think was bone pain (not muscle issues) in 2016/17, nearly 2 years prior to diagnosis, it woud seem that perhaps I had bone mets first and then liver/lung. I am on zometa every 3 months. Yes, it does seem to be slow. I was the first person my oncologist put on the ibrance/fulvestrant combination and he said he thought I would do very well on it, I think because I seemed to have done so well on the femara (letrozole) treatment. It seems I am doing pretty well as you seem to be doing also. I will be having another whole body nuc bone scan as I have been having more bone pain in the rib/back area. Don't know if it is new or just more noticeable now that summer is here and I am out and about more.
I'll be interested to hear the results of your scan. I hope to have a whole body scan in the near future too. That seems to be the only way we'll know whether the mets are controlled or progressing. Now that I'm gardening, I've noticed not only a lack of stamina, but also more joint aches so I can appreciate your wondering as to the source of your bone pain.
MRI of Brain seems fine; Nuclear Whole Body Bone Scan seems fine. I will talk with PCP, Oncologist and Neurologist (followup to stroke at end of May) for details in findings but report were clear, no mets to brain; no new spots on Bone scan. All good news as far as I'm concerned. Now in day 2 of 30 day heart monitor. I think it'll be a long 30 days!!
2 small tumors in RIGHT breast, 1 micro met in lymph nodes.Had a mastectomy.Onc said it was my choice to have chemo or not.He didn't think it was really necessary.3weeks later got a MASSIVE infection at surgical site followed by 2week hospitalization and massive debreedment (sp) at infection site.It took 4-5 months to heal and I could not start chemo til it did.Had 4-5 rounds of chemo (Red Devil),Radiologist did not advise chemo.Was on Tamo for 5 yrs and letrozole,I think,for 5more.
In 2018 at70 , my GP scheduled a CT for a mild but consistent pain in my left back area. Result-
malignant Plueral Effusion in LEFT lung(metastatic breast cancer)
No other sites?
Some radiologists have suspected Bone Mets(not conclusive) first in Jan 2019 and again in April of this year.Second opinions at Dana Farber are not sure bone stuff is metastatic or arthritic .Wait and watch.Any progression(if so) is very slow.
PE is still present but has not changed
Have been on Ibrance and Letrozole since August 2018 with no real side effects .Blood work is fine.I bet they will advise another scan in August to see if there is progression...
Hello - I am new to this forum, but glad it exists. I am 80 - but working full time in healthcare (not direct patient care - but lots of contact with healthcare providers who are taking care of COVID patients. I am on iBrance and have monthly blood tests that monitor my white cell count. It is usually low (and every now and again I take 2 weeks break (as opposed to one) each month. I also take Letrozole daily. As far as infection risk, I am careful with “people - distancing”, mask wearing and have reduced my trips to stores (thanks to on-line shopping and increased home delivery options). The main challenge is keeping close to family members and grandchildren. I hate that they have to wear masks when they visit - even if vaccinated. Even then, I try to do a lot out of doors with them to keep close quarters to a minimum. It is, it seems one of the prices to pay - but better than the alternative, for sure.
I don't fit that category as I was never diagnosed with an early stage bc and was diagnosed with MBC (bone mets only) the month of my 58th birthday. I am 75 now and have made a point of learning all I can about MBC, attended several bc and mbc conferences. My impression is that long intervals between early stage bc and mbc suggests that the cancer cells are not very aggressive. Being older often means the same--as none of our cells are as full of energy as when we were younger and more energetic. I'm only on third line treatment but had some progression at last scans and will have scans again soon and will likely need to change meds. My closest friends are all my age or older and we all talk alot more about our health than we did before! lol Among the joys of aging! My husband and brother complain more about their health, too. Sigh!
Hi Cindy,I’m 74.5 and in 2009 was diagnosed with stage 2 BC. Had a lumpectomy, followed 3 months of chemo and 7 weeks of daily radiation. Although given Arimadex at the end of radiation, it made my joints very stiff and I put on a ton of weight. I stopped taking it to improve my quality of life. Was thought to be cured.
In 2018 was diagnosed with stage 1 BC in other breast. Had a lumpectomy but nothing found as surgeon believed all cancer cells had been removed with needle biopsy.
In 2019 I switched primary care doctor as having abdominal pain that wasn’t going away and previous doc couldn’t find the cause. New doc thought it was back related as painful to the touch and ordered an MRI. This showed nets to my spine (T10) and lymph node. I’ve been on Ibrance 100mg and letrozole since 9/19 and scans so far have indicated no further progression. I too have low wbcs so take 3 weeks off VS the 1 which Pfizer recommends. No side effects other than low neutrophils and occasional mouth sores. Was taken off Ibrance during Covid (6 months) as originally my oncologist and others thought with low immunity I may not be able to fight it off if contracted. Having scans 6/30 and hopeful they will show no further progression again.
Hello Hazel, I definitely fit into this category. I had a radical mastectomy in 1989, needed no further treatment except for 10 years on Tamoxifen. I thought cancer was done with and forgot about it. I had very little ill health and a healthy lifestyle. 30 years later in 2019 I developed strange back pains and after many visits to GP and A&E was eventually diagnosed with stage 4 breast cancer. I have 'extensive' bone mets throughout my whole body but no other organs are affected so far. I have been stable on Palbociclib, Letrozole and Denosumab for 2 years with manageable side effects. This was all quite out of the blue for me as nobody had ever mentioned or warned me of the possibility of stage 4 cancer. I knew absolutely nothing about it and certainly not about the possibility of a recurrence after so many years. Hopefully people are better informed these days - there was no internet then. I am now 78 and carer for my husband who has dementia. I would hope to live a few more years to support him and my daughter who is a single mum but I realise I can't complain when I read about the heartbreak of the young women who have this horrible disease. My cancer nurse suggested that this kind of recurrence after so many years shows it is a 'lazy cancer' and will continue to grow slowly. I hope so but I wonder how many years I must have had it without noticing any symptoms! Sending best wishes.xx
I was diagnosed in 2002 with BC. stage s because also lymph involvement. Has left side mastectomy , 6 months chemo , 5 weeks radiation , 5 years tamoxifen and 5 years letrozole. Was told ir would come back and did in May 2019. Had 12 tumours in my spine. Had 5 radiation treatments to ease the pain.Was put on letrozole and ibrance 125. and zometa every 3 months. Could not tolerate the ibrance so dropped to 75 and just manage to get my neutrapylls up for the next treatment. The chemo gave me heart damage so now need a leaking valve fixed. I had an angiogram on Wednesday so waiting for next step. My Mets have just stayed in my spine. Hope you continue to do well. Theresa
I think I fit the scenario. First off dc in situ in one breast 35 yrs ago then tumour other breast mastectomy. Recurrence 2003 excision radiotherapy then 5yrs Tamoxifen and 3yrs letrazole. MBC 2016 bones and one lesion liver which I had ablated. Then on Ibrance Letrozole and Brondanat until Nov 2020. Interuption due to emergency bowel resection not related to cancer. Was going to have liver resection as original tumour resurfaced but in the interim another two small lesions appeared. So on to Xoleda. Have had 4 rounds which has shrunk the tumour which can be seen on ct. side effects caught up with me so off for a month and then reduced dose.
The idea is for liver team to reevaluate after 6 months on tx.
I do have the makeup of my original tumour which was slow growing.
I had first tumour in 1994, had a segmentectomy with chemo, radiotherapy and tamoxifen. I had reconstruction in 2003. Then last year I was diagnosed with MBC after severe leg and hip pain and lumps appearing on upper chest which turned out to be lymph nodes breaking through. It was in lungs and bones, widespread but low level. I'm on letrozole and ibrance, bones are stable and lungs improved, but I have had low neutrophils. The breast care nurse said it could have been there for a long time and growing slowly.I am 72.
Hi, I was diagnosed with BC in 1991, stage 2. I had a lumpectomy, radiation and chemo. I, like many others, thought I was done with BC. In August of 2018 I saw my endocrinologist for osteoporosis and he did lab work. My alkaline phosphatase was slightly elevated. I repeated the test three months last and it was still elevated. I went to my PCP for more lab work and a liver ultrasound, CT scan, MRI and PET scan. I was diagnosed with MBC of the liver in March of 2019. My doctors were shocked that 28 years had passed since my original diagnosis. I am on Faslodex only since I have difficulty swallowing pills. I have been stable since my diagnosis. I will be 72 in September. Good luck to all of us in our journey.
Wow! 28 years after early BC before you were diagnosed with MBC! Two years later and no progression. For sure, your cancer has to be described as indolent/slow-growing! My guess all those above who answered my post will agree with me: @hdhonda, @troutgal, @mudakurag, @building-strength, @queeneee, @pjbinMI, @red1246, @gwynhubhome, @Totheriver, @MariedeM, @Beryl71, @SeattleMom.
I also know of at least two others who might be interested @jersey-jazz, @8576.
I am hoping this type of post which contains addresses for all "group members" might be one way each of us could reach all the others in our group efficiently. I see this group as those who share an interest in the best treatment approaches for slow-growing/indolent cancers in seniors (60 or 60+).
Hi Cindy: Thank you so much for your reply. I am hoping I have many more years before progression. I saw a surgeon at Dana Farber and he said he has had only 3 other patients with MBC of the liver who have been over 25 years since the first diagnosis. He could not guess how long I have had MBC, but labs had been normal up until August of 2018. My labs are now in the normal range. I would be interested in hearing from others. Thank you again,
I'm trying this again, wondering whether it will reach everyone who responded to the post given above. It seems that there are at least 15 of us in similar situations.
I finally summarized all the responses to my original post:
(1) All of us (except one a decade younger) have been diagnosed with de nova or MBC as seniors. Our current age range is 59 - 84.
(2) Except for a 2004 diagnosis, all of us were diagnosed with mets since 2016. The most common mets are bones (12 individuals, 5 with bones only), followed by lung and liver (5 individuals each - one only lungs, 3 only liver), 3 mentioned lymph nodes as well.
(3) Most of us are still on our first treatment line (Ibrance & letrozole, in 6 cases; 2 others recently switched to Xeloda from Ibrance & letrozole; 2 on tamoxifen; etc.) Even the 2004 diagnosis has only led to third line treatment.
(4) The metastatic recurrence interval (Mri) for those originally diagnosed with early breast cancer varies from 10 to 30 years (at least 7 individuals with >15 years in between early and metastatic breast cancer).
Thanks to all of you for responding to my original post. I hope you all receive this joint post.
Dear Cindy,I have just read with great interest your summing up of our situation - so good of you to put it all together like that. We 'oldies' (some older than others!) are obviously in a very different position from those young women with young children facing a very aggressive form of MBC. It does give me hope that mine will continue to be 'indolent' but who knows? It's good, too. to be able to be share experiences with others in a similar situation. Nobody in the 'outside' world can possibly understand this constant awareness of our own mortality that we face.
Thank you again so much - and please pass on any further thoughts, information gleaned etc .
Thanks so much, Gwyneth for the kind feedback! I too think that we're in a very different position than much younger women. I wonder why we all tend to be given the same meds? I'm going to reread some of the journal articles I read months ago.
I also agree with you that it's good to be able to share experiences with others who also face "constant awareness of our own mortality" 😜😜....I hope to read more posts from you!
Hi Cindy: Thanks for posting and please continue to pass on your thoughts. Next MRI in August after a trip to Maine for a few days. Hoping the results are still stable. A shrinkage in the liver tumor would be great, but I will take stable results. Best wishes to all of us in this journey.
I was diagnosed stage 2b in august 2006. Breast and lymph node . Chemo , mascectomy, radiation. No further treatment.
In 2017 jan i started having arm pain which got progressively worse . I was send from gp to physio but never to oncology . In jan 2018 due to unbearable arm pain i was send for an MRI. Mets with C5 fracture. Surgery and radiation. Scans showed mets to C5-T1.
Started with arimidex , progression to T spine , changed to ibrance and faslo. Progression to femur , hip joints , sacrum . Changed to verzenio / faslo.
Bone only desease and currently stable on verzenio/faslo. Added zometa march 2020.
Hi Joey,Other than your age, you do seem to fit well! It seems likely that there was 10 years or so between early BC and MBC in your case. I wonder if your relative youthfulness was the reason for your earlier progression on Ibrance? I'm glad your onc figured out the meds to keep you stable!
Hi! I’m a bit late to this thread but also am really close to fitting the pattern (I am not 75, but 66).
2001 - Stage IIB, bilateral mastectomy, chemo, radiation, tamoxifen for 5yrs, Letrozole for 4. Post-menopausal, age 46 at dx
2020 - (19 years later) MBC in liver, surgical removal w/clean margins, started Ibrance/Letrozole in 10/2020. Age at MBC diagnosis was 65.
So far, no known add’l mets.
Both initial and MBC are ER/PR+, HER2-
It’s good to hear that the longer the time period is between instances, the slower growing the cancer might be. I hadn’t heard that so it is something to cling on to.
Welcome MK! Yes, you are a bit younger but an MFI (metastatic free interval) of 19 years certainly suggests very slow-growing cancer! It is also a positive sign that the mets are only in your liver! Did you have a liver biopsy? I think research indicates that cancers that maintain their PR+ status are also a good sign.
Hi Cindy- I was going to have a biopsy but the team thought that since it looked like cancer in the scans that they should just go straight to surgery because 1.) they assumed they’d have to do surgery regardless since it had advanced in size more than they liked in 4 months, 2.) there are chances that the biopsy could be incorrect (my initial breast biopsy turned out to be inaccurate in what type it was so I knew all about that chance) and 3.) the biopsy procedure itself could introduce more spread since it was in the liver, which is so vascular and 4.) they’d have to do two procedures instead of one at the height of the pandemic. So we went straight to getting that bad boy out of there. In retrospect, even though the surgery wasn’t fun, I know the entire thing is gone gone gone. At least that one.
Thanks for the positive info. It really helps. Honestly, I am more concerned with getting COVID than I am the cancer taking me soon. I may be naive, but that’s what my gut is telling me. But deep down I need all the reassurance I can get, so thank for the third time. I am incredibly grateful for where I have landed in this journey.
I think I meet this criteria. Diagnosed with primary ER+Her- 2005 aged 57. Mastectomy, axilla dissection, chemo then 5 years Tamoxifen. 2018 Bone met in hip diagnosed due to pain. Assumed still ER+ so Letrozole Xgeva and one off radiation.
hip tumour grew, so restarted Letrozole with ibrance for 12 months and seemed to control it.
Increased again so stopped this combo and started tamoxifen to see if it will work differently. Another PET in 3 months. Assume it’s slow growing. Interesting reading about others experiences. Thank you.
Hi Cindy, it's been a few months but I wanted to let you know what has happened. Since my last message, which followed a small stroke, I was hospitalized again and this time they identified an unusual heart situation that shows "conflicting " numbers...long story short. I had my aorta heart Valve replaced via the TAVR procedure. 17 days later I drove 6 hours north with a flyfishing friend. Met a 3rd there, my usual place Been going there for over 30 years. All happy to see me. Caught brown, brook and rainbow trout. Feel better than I have I. Over a year. Am in cardio rehab. Twice a week until mid Jan. Doing well. Have discussed this little study you started...older women, long time between original and mbc diagnosis, having stabling success. Just had annual mammogram and chest xray. Both "normal ", no new indicators. My oncologist calls me his poster child because I am the first person he put on thd ibrance, fulvestrant, Zometa combination. He is thrilled with the results. But we havd postponed/skipped the Zometa scheduled for last week dunce I am having dental work done. I'm fine with that delay or skip. Dental work will be done /recovered by time for my next Zometa, Dec. Bottom line, the tiredness, etc was more heart related than cancer, treatment or aging!!😁 Hope others in this group continue to have slow growth!
I am writing for my mum, I will tell you her story .. In 2005, at the age of 60 and a few months after retirement, my mother was diagnosed with colorectal adenocarcinoma, she was operated and part of her intestine was removed, she had 6 months of chemotherapy and everything seemed fine. During one of her follow-up visits in 2008, a mammogram revealed a lump in her breast. Another operation, quadrantectomy and removal of the lymph nodes all unharmed, result G2 ER and PGR 100% her2 negative. No chemo this time but radiotherapy + tamoxifen for 5 years. In 2015, seven years later, she had recurrence of the same breast, mastectomy (histological identical to the first one), + letrozole.3 years later, in 2018 the marker ca 15.3 begins to rise, very few points every two / three months. The oncologists did not seem to care about these slight elevations but after almost a year they do a check-up scan that highlights small enlarged lymph nodes in the mediastinum. She begins therapy with fulverstrant + palbociclib (which causes many side effects) and 30 sessions of radiotherapy for the lymph nodes of the mediastinum. After radiotherapy she resumes ibrance / fulvestrant, at the first check she results NED (November 2019) and remains stable until today. For about three months she has stopped ibrance due to toxicity and she only has injections of fulvestrant. Tomorrow we collect the PET made last week and we still hope everything is fine. She's 76 now (we're from Italy)
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So glad I found this site
Anyone with Pleomorphic ILBC??
Liver mets
Hot Flashes!!!!!
