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After breast cancer: 12 years out, questions about recurrence
I had ER + stage 3 bc 12 years ago. Within 2 months of chemo after a double mastectomy i developed severe myasthenia gravis and rhumatoid arthritis. I get plasmaphoresis every 6 weeks a year ago had my thy.us gland out to see if it would help and my treatments went from every 2 weeks to every 6 weeks and rituxan every 4 mo ths. My question is , i have small hypodensities in my liver, inditerminate, could be nothing, probably is nothing but my tumor markers for 27-29 went fromm 11 to 38 even though in normal tange they are on the edge. My question is can plasma phoresis lower the tumor marker count as protiens are replaced? Just curious as my body is complex. My onocologist said reoccurance doesnt happen at 12 years, but i read an article that it can happen at 15,and even 20 years. My tumor was over 5 and no lymph node, 2 areas in left breast and pre cancer in right breast although i understand bc doesnt spread from on side to the other so that was different in itself. I also have MlH1 lynch syndrome , my mother,sister,2 uncles had colon cancer, aunt stomach cancer, uncle breast cancer, uncle brain cancer, aunt ovarian and throat cancer. Wondering if following up with just my gastro doctor is enough with another CT in 6 months. My BC ono pretty much said my tumor markers are ok and even though I have lost 24 lbs without trying there is nothing to worry about.
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Also, My daughter had luekemia AmL and is 6 years out from her bone marrow transplant. With that all said I have severe fatigue right now, greater than normal. Why do I feel like this is not okay? I never worry about BC reoccurance or lynch, i get my colonoscopies. I am confused right now. what if anything should I do or ask
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1 ReactionPlease if you are not getting results and answers at your current doctors office. Make an appointment with a different one. I would wholeheartedly recommend a second opinion. If you have a large medical center or university close, even better. 24 lbs and fatigue can be from all kinds of things, but just saying you are fine isn’t really a good answer.
Do you have a large medical complex, or university close by?
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3 ReactionsMy BC was triple positive in 2012, standard chemo with trial drug Neratanib for 3 months, double mastectomy, 35 rads was on Tamoxifen for 7.5 years (10) was recommended but when I reached menopause was switched to Anastrazole. Now I had been diagnosed with reoccurrence to chest wall, lymph nodes, abdomen, liver & spine. I don’t know how doctors can say reoccurrence cannot occur after 10 years. I know other survivors who have had reoccurrences after 12 plus years, even after 15. Can a PET scan be ordered or a 2nd opinion?
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3 ReactionsHi thank you. I am going to look for a second opiomion for sure. I am not very good at advocating for myself. Not like for my kids. I would feel better with a PET scan. Would have to find a different doctor
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2 ReactionsAlso, I wish you the best. I never took Tamoxifan, it made my RA worse and I had an allergic reaction. So 12 years no other treatment than the i itial chemo. Really, sending my best.
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2 ReactionsFirst of all, please do get second and third opinions since yours is a complicated system. And specialists aren't always broadly-educated. Or can become too narrowly focused. I'm reminded of an old cautionary adage, "to a hammer, everything is a nail." I think it's particularly true of specialists and our medical care can get too compartmentalized. And I second Chris' suggestion that you try to find a medical institution that can help. I switched from a lone primary care practice to an excellent PCP within a renowned clinic and that has been an enormous improvement in my comprehensive care.
As to your question, I'm new to the breast cancer experience so, since I was diagnosed in October, 2021, I've been reading as many relevant studies as I could. I cannot remember the name of it, but one study questioned whether many breast cancer recurrences are in fact not actual recurrences as thought of in lay terms, but more likely separate isolated incidents. The researcher looked at the meta data and questioned the prevailing thinking about how breast cancer cells likely metastasize. He posits that, in a sense, one can be unlucky with breast cancer and get it more than once without the two events being biochemically related. That might make sense since one's genes remain the same during and after breast cancer as do one's essential biochemistry and environment. So whatever factors allowed the first cancer cells to thrive remain, though geld in abeyance with the various therapies while one is participating in them. But the reality is that medical science has yet to decode the many mysteries of cancers or the human body. The good news is how many things can be treated today while we all learn more. Your medical saga being a case in point and merits applauding you for getting through it with grace.
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3 Reactions@bigfootx2, I concur with everyone else that you would be wise to consider a second opinion, especially with your family history of cancer and that you have Lynch syndrome. Unfortunately, having had one type of cancer does not spare you from the possibility of developing a second type of cancer. You'll want to make sure that colon cancer or another cancer gets ruled out. Luckily colonoscopy can give a clear picture.
If you'd like to consider a second opinion at Mayo Clinic, here is the contact information and information about requesting an appointment: http://mayocl.in/1mtmR63
I found your respond is very interesting and wander if you can refer to material ( where can I find it?)
I have bilateral lumpectomy in July/2021 . No chemo or radiation.
The pathology report and MRI soon after surgery showed some residue of cancerous cells.
The last one this month doesn’t show ones.
Though it is a good news , It echoes with your comments about specialist’s narrowing observation .
Therefore, I prefers to
do my home work before talking to a doctor..
Thank you
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3 ReactionsI have bilateral lumpectomy last year
No chemo or radiation. ( have arrhythmia ( AFIB)
Tamoxifen has recommended It triggers UTI(urinary track infection) , than need antibiotics to prevent kidney problem.
Therefore, I am not much concern about BC reoccurrence but more about possible quality of life for now!
Any thoughts ! Thank you
Definitely better and more attentive doctor / doctors !
You need a lot of questions to discuss !!
You’re saying that
plasmapheresis might do the lob for tumour marker.
What is it?
About your relatives’s cancers - everybody have it, but occurs /develop when immune system stop working .
Take care !
Thank you