I am concerned about quality of life with hormonal therapy.
https://www.urmc.rochester.edu/news/story/3935/men...
https://www.ncbi.nlm.nih.gov/pubmed/17923830
I need my brain and need to be able to think clearly to make the decisions that are right for me. I have read that these 2 drugs might spare our brains, but have not been able to have a face to face discussion with my medical oncologist. He is too busy to see me. I get to see the Nurse Practitioner with much less knowledge than my Dr has, and I am met with " that is a good question", and she googles it. I can do that, and already have. I want expertise, not just acknowledgement that I ask good questions. I go every 3 weeks for targeted therapy, and was not able to see him this time and not able to see him next time either... so, I have not yet started on the hormone therapy, I wonder how long you can wait? I have my mastectomies in March 2017, 6 cycles of chemo completed in August, 7 weeks of radiation completed in October. Now I am on targeted HER2 herceptin and perjeta. I still have chemo brain from the chemo and radiation and really am not wanting to compound my thinking issues. I am thinking about taking Raloxifene instead of tamoxifen or if anyone knows anything about AZD6244 that showed promising results in protecting noncancerous cells and still limited hormonal growth in cancer cells.
Comments
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You deserve to be seen by your doctor. If he/she has no time to see you, then ask the nurse practitioner for a recommendation of another oncologist who would be willing to spend the time with you to discuss your concerns.
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Evista is recommended for those without breast cancer as a safeguard treatment. It is not recommended, yet, for those with cancer. Let your doctor know that you will not start any anti hormonal therapy, until you meet with him. If you are doing active treatments, you may be able to stretch the time out in between. Tamoxifen is a long term use drug, as opposed to herceptin and chemo. It is more important to start a medication and be able to stay on it, without experience side effects from layered treatments. In my life, I tend to unlayer complicated situations, things, designs, drugs, etc. The kiss principle has worked well for me.
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Ditto what KBeee said. You won’t know if you’ll experience the brain fog with tamoxifen until you take it and see what happens.
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KBee, thanks I agree. I have let my desires be known so far however to no avail.
Michelle, I won't take anything for hormone therapy till I get a chance to see my MO face to face, but then, who is losing here? Does he care? Not sure. Apparenty there sre sicker patients than I am. But that sure doesnt make me feel any better, Seriously thinking of switching to U of M. I am currently at CTCA in Zion. I know they are busy at U of M too even so, I get to see the oncologist every time, I just might have to wait for hours.
Thanks for the support Lula. I already have brain fog, so no way to know if I take it now.
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carmstr835,
Hi,
I am in the same boat as you as far as needing my mind. I work in a technical field (engineering). The chemo brain was hard and I am still not as sharp as I was before chemo, still hoping it is going to clear up. I am 4 pills in on the tamoxifen and hoping things will even out there as well (right now mood swings, headaches and nausea) . If I find I can't perform my job I will stop them - my job is my only income. I have to be able to function. I also have the same problem with my oncologist, I told them I was not starting any drugs until I spoke with him. That meeting did not go so well as he got agitated that I was asking questions. I kept asking what was my least destructive option (he wanted to put me on an AI) I had concern about my bones. He would not answer the question, his response was "you don't have to take anything". For me that was just not an acceptable response. I have one more Herceptin to go and I have to see him for that and it will be my last. I am going to change doctors. It is a sad state of affairs when you are more stressed out about dealing with the doctor than the treatments. I told him I was willing to try tamoxifen, but tears were shed that day from the frustration of dealing with him. I totally understand your situation and if there is another doctor you can see I say this is too important not to have one you can talk to and trust.
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CCNC,
I completely whole heartedly understand. I am going to email him and let him know my concerns/ I don't want an email Dr. or a phone call Dr. I want to meet with him face to face to see if he is understanding my concerns or just patronizing me with what I asked for. Emails and phone calls seem so impersonal and personal impressions are lost. I have had the same experience with this Dr that you have had with yours back when we began the chemo, he actually walked out and told me there are other oncologists if I don't trust his judgement. They seem to be much happier with we quietly do as they say and don't have any questions or concerns regarding our treatment. I thought I had worked that out, hence the reason I need to see him in person each time there is a serious issue. I have seen him in March, April and May, one time in June, then I didn't see him again until Nov 1st. Will miss him again Nov 21 and Dec 12. I should be able to see him every 3 weeks.
This time on Nov 21st, I have a new nodule on my lung, 1 cm and the nodules on my liver had grown, I NEEDED to see him, but was denied. The pet scan and cancer marker tests were eventually, after I refused to wait, ordered by the NA, and came back negative, that was good. I still think they were pretty sure it was stage 4 metastatic cancer to my internal organs, but it did come back negative and they will do a ct scan again in 3 months for the lung.
The reason they were not thinking my situation is deemed an emergency is if I am stage 4, treating it now or in 2-3 months won't change my survivability. If you have stage 4, then it is not something they are concerned about, I guess. But to me it was very very important and to tell me it won't change my survivability gives me no comfort. They said all these tests will just raise my anxiety. Well, they were all negative, and my anxiety is gone, so yes it was very important to me not to worry for 3 or 6 more weeks I was stage 4 when I wasn't.
I think we need to be taken seriously and it is important we are given the proper information and kept appraised of our condition prudently regardless of our prognosis.
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Most doctors welcome second opinions. If your doctor has concerns about you "questioning his judgement" it is time to find a doctor who puts yous needs above his ego.
With my recurrence, I had a doc at a major, well known medical center, who insisted it was just a little local recurrence, and I did not need chemo. My gut told me otherwise. This doc refused to order the oncotype and got irritated that I questioned his judgement. I got another opinion closer to home, and expressed my concerns that it was more aggressive. We had a good conversation and he agreed with my gut and also ordered the oncotype to give us more data. It came back quite high. This doc and I are always on the same page. He's the perfect fit for me.
It was hard to switch docs, but I am so glad I did because I always feel like he's got time for me, and we are a very good match personality wise. Your MO will be the person guiding your care for years. Find one that has your best interests in mind, and communicates with you without patronizing you. You deserve to be treated with respect.
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Doctors really don't have much to say about side effects of hormonal treatments that is not available online or in books. If it is time to start (and not clear it is, since you are on HER2 meds, so I really don't know) I would not delay until seeing the doc. You can go off once you see the doc but I would start while waiting- if that is what is recommended.
Quality of life is not terrible for everyone on the hormonal meds. It is hard for some and easier for others. I already had osteoporosis but have been taking Femara for 3 years. I haven't broken anything. Exercise and a good mattress help me a lot.
My personal feeling is that it is good to try them at least.
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Hey there:
I am having issues with my hormonal therapy now. BTW, my MO also is not going to see me personally anymore unless something significant comes up. She has referred me to her nurse practitioner. Last visit I told my MO I wasn't sleeping, was starting to get joint pain and constant gut issues. She told me I can't take tamoxifen (I am on Arimidex) since I am post-menopausal and there is no other option. I just have to live with it basically. She did suggest sleeping pills, but also said she will not prescribe because she doesn't agree with them. My family doctor also will not prescribe for the same reason. They both say try melatonin.
Anyways, after that MO visit at beginning of November, I switched from taking my Arimidex at night to taking in the morning when I first get up. I upped the melatonin I have been taking to 10 mg from 3 mg. I can fall asleep, but I sleep for about an hour and then I can't sleep after that most nights. I say I get good sleep two nights out of the week. The thing that is most debilitating now is I take the Arimidex at around 8 AM and within half an hour I am getting tingly feelings all over my body, my heart rate goes way up (150 beats per minute just sitting) and I get lightheaded and a bit short of breath and a bit nauseated. This lasts 5 minutes or so, then does down and I get diarrhea. The problem is these "episodes" come and go over several hours. Around 4 or 5 in the afternoon they are gone. I have also lost my appetite. I cannot live with this. I drive for my job and I cannot have these while driving. So, I went to my GP's office today about these episodes because they just started a few days ago and I want to make sure its not something serious. I couldn't see my regular GP as he was away but the one I saw told me she can't do anything about it, she doesn't know if its from Arimidex or not, and I need sleeping pills but she won't prescribe them because I am not her patient. She told me she feels bad for me, but there is nothing she can do. She told me to call my oncologist and ask about the side effects of Arimidex. My oncologist told me to see my GP if i have issues between MO visits because there is no one to answer my questions between visits at the so called cancer clinic.
My quality of life is now starting to be affected and I am getting the runaround. I want to comply and take the drug for the full five years since this is my second time around with BC. Its only been 6 months though and they are getting worse, not better. I don't know if I can last. I was hoping some doctor somewhere would help me cope with the SE, but it seems I am not been taken seriously. I am in Canada and getting another doctor, GP or MO, is not that easy. I didn't have a GP for years due to lack of them. And I am referred to the MO by my GP. So.... not sure who to turn too. I have a friend who is a vet who says to go to a walk in clinic or ER at different places until I find someone who will help me with my sleeping at least. Maybe I will have to...
The next step is to try and get in to see my GP when he returns in January and directly tell him to treat the sleeping problem. But thats a month away....
wallan
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Wallan, I am so sorry. Winding Shores, thanks for your input. I haven't received a prescription for the antihormonal drugs yet, he wants me on them now, but I am not going to take any until I know I can protect my brain. This is the email I sent to him just now:
Dr. XXXX
I am sorry I missed your call today.
I have serious concerns in taking a drug that will impair my mental abilities more than they are now. I don't know what the answer is, but if there is no drug that does not destroy 75% of the myelin sheath in my brain, then I would rather keep what I have left of my brain for as long as I can.
There seems to be some promise in Raloxifene, but further studies do not support the advantage over tamoxifen, However it was not a study that is valid IMHO. There were very few with a baseline study prior to the medications and according to info I have read, the damage is done well before the 1st year is completed. So to me the results were useless.
There is another drug, AZD6244 that seems to protect the oligodendrocytes and still allows the cancer cells recepters for the hormone estrogen. It seems it is an old cancer drug, MEK 1/2 inhibitor selumetinib (AZD6244, ARRY-142886).
This is what I wanted to discuss with you as well as the possibility of metastatic progression with the local scan I had while I was home last week.
They found a new nodule on my upper right lung that caused a fever as well as mild dependant atelectasis. I went to the local hospital worried about a heart attack. That was ruled out, as well as a lung embolism. The D-Dimer was elevated in the blood test they did. I was discharged after 2 nights. I had another episode, exactly the same this past Tuesday with low grade fever and severe lung and chest pain, I could not lie down and was up most of the night, slept in a chair. There was no point in going to the hospital again. It was exactly the same pain and when the low grade fever subsided 2 days later the pain is much less and I was able to sleep, however this time the pain is not completely gone and I do still feel under the weather, so to speak, and my fever is just now beginning to creep back up again to 99 after no fever yesterday or all day today till now. So, something is not right.
They also said the CT scan of my liver showed a growth of my liver lesions we thought were cysts because there was no change in August. I was quite concerned my CT scans of May 12th were never actually compared. CTCA never recieved the actual scans. You now have all the scans U of M did back in May. Hopefully a comparison will show if there is any noticeable change on the adrenals (was it present in May?), lung (was it present in May?), and liver (is there a change in growth?). I know the Nurse practitioner told me that diagnosing stage 4 now or later has no value and no change in survivability,but I need to know and I think there is value in comparing these scans. I can deal with anything if I am given the information, it is the unknown and lack of trust that causes my anxiety.
I had a cancer marker test and a pet scan Wednesday Nov 22, all negative. I don't know what is going on in my right lung, it is not normal, and maybe is related to the radiation treatment I recently completed. I don't believe it is cancer, since there was no metabolic activity. I hope it gets better, I need my lungs, I play brass instruments and I don't have enough air to perform now.
Another discussion I wanted to have with you is the perjeta and my reconstruction surgery slated for April 17th, 2018. I am not sure I want to stop the Perjeta early, we have already missed 2 cycles (because of the radiation treatments) and the recommended treatment is 17 cycles for maximum benefit. If I stop for the surgery in April, I expect I will lose 3 more cycles; 2 before and 1 after. They say I should stop perjeta 6 weeks prior to surgery. I expect I would miss March 6, March 27, and April 17. That would be a total of 5 of 17 cycles almost 1/3 of the treatment. If I decline the hormone treatment, I think I will need all the help I can get regarding other treatments. I do plan to continue the 7 days of fasting every 3 weeks, indefinitely. I am hoping that will improve my survivability as well. I also plan to exercise daily.
I guess my questions to you are:
1.Is AZD6244 an option for me? What about cognitive decline in Raloxifene as opposed to tamoxifen? What is the mode of action in Raloxifene and how can it protect cognition?
2. What could be happening in my right lung, if it is not cancer related? Was that nodule present in May? Did my liver lesions grow since May? since August? Was the adrenal lesion present in the May CT scans?
3. I am thinking of delaying the April reconstruction surgery until my final perjeta cycle in July,that would schedule the reconstruction surgery sometime in early September. I probably will not want to go through with it then. I would be completely healed and hoping to get my life back to some normalcy. So I will probably just stay flat. I can give up my breasts for cancer, but not my brain. I am disappointed, however I can handle it.
I am sorry you are too busy for these discussion in person. Email is so impersonal. But this is better than not knowing. I would have emailed you earlier, but I find it very difficult to concentrate and this has taken me quite a while to compose, I hope it is clear and you are aware of my concerns and I am looking forward to some answers and your thoughts.
I want you to know I have no problem working with the Nurse Practitioner, it is just that she doesn't have the answers to these questions.
Thank you, Dr XXXX for your time and expertise,
Attached is some of the studies I have discussed here:
Mental Fog with Tamoxifen is Real; Scientists Find Possible Antidote
Tuesday, September 17, 2013
"... with tamoxifen plus AZD6244, cell death in the corpus callosum, the largest white matter (myelinated) structure in the brain, was prevented, the paper reported..."
Researchers Detail Chemotherapy's Damage to the Brain
Tuesday, April 22, 2008
"...oligodendrocytes and dividing precursor cells from which they are generated underwent such extensive damage that, after six months, these cells had all but disappeared...""... The myelin membranes are constantly being turned over, and without a healthy population of oligodendrocytes, the membranes cannot be renewed..."
How to Protect Brain Cells from Tamoxifen
Wed, 09/18/2013 - 10:11am
https://www.dddmag.com/article/2013/09/how-protect-brain-cells-tamoxifen
"...In their experiments, AZD6244 essentially eliminated the toxic effects of tamoxifen against O-2A/OPCs..."
Effects of Raloxifene on Cardiovascular Events and Breast Cancer in Postmenopausal Women
N Engl J Med 2006; 355:125-137July 13, 2006DOI: 10.1056/NEJMoa062462
http://www.nejm.org/doi/full/10.1056/nejmoa062462#t=article
Effects of Tamoxifen and Raloxifene on Memory and Other Cognitive Abilities: Cognition in the Study of Tamoxifen and Raloxifene
J Clin Oncol. 2009 Nov 1; 27(31): 5144–5152.
Published online 2009 Sep 21. doi: 10.1200/JCO.2008.21.0716
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2773473/
Cognitive impairment following hormone therapy: current opinion of research in breast and prostate cancer patients.
Curr Opin Support Palliat Care. 2017 Mar;11(1):38-45. doi: 10.1097/SPC.0000000000000251.
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carmstr835:
I am following this thread with great interest; thank-you for starting it. Also appreciate the efforts you have invested in researching this issue and the links you have provided above!
It is very early days for me yet with respect to bc as I was just diagnosed last month and am currently waiting for surgery. However, I am strongly ER/PR+ and so expect to be told I will need hormone therapy. Because I am 42 and all the latest studies seem to be saying longer is better, I expect to be told I will need to stay on hormone therapy for 10 years.
The potential cognitive impairment side effect of hormone therapy terrifies me. All my life, the biggest (sometimes only) advantage I have had in life is my brain. I am trained as a chemical engineer and I work as a process engineer. I (hopefully) still have 15-20 years of working ahead of me after my cancer treatment is done. I can't afford to make mistakes at work because my brain is fogged from hormone therapy. In Canada engineers take an oath to protect the public when we begin practice; how can I do that if I am forgetful or not thinking clearly? Yet it seems I can't afford to skip hormone therapy if I want to do all I can to see my children grow up.
In conclusion, cancer sucks.
Please continue to let us know what you learn, and I wish you all the best.
Dance
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Carmstr835:
It is great that you are pursuing your important questions about hormonal management by emailing your oncologist, where the nurse practitioner, no matter how well-meaning, clearly is unable to answer your questions. Unfortunately this is an increasingly common situation, e.g., intelligent patients have intelligent and difficult questions the ancillary, here the assigned NP , cannot answer them, but then access to the doctor is still blocked.
Even though the doctors may not know the answers either, you need to have a full vetting of knowledge known and unknown. The importance of preserving your brain function is paramount in your decision-making, something some providers do not appreciate very well when dealing with high-functioning women, , so if it has come to this point that you get no answers from your NP and no access to your doctor, or have to grovel with one-way emails to try and get answers, would it be possible for you to gather all your data and go get an independent, second or third opinion, even if it is outside your medical plan, even if you have to pay cash or charge it or borrow money from friends and family? I am not talking about cash payments for the whole course of care, only the rich can afford that, but just a cash payment to a non-preferred provider independent board-certified oncologist for his time, to listen and review your situation.
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carmstr - It looks like you took an AI back in March. Is there a reason why they don't want you back on that? Did you have problems with it? My understanding is that AI's have a slight advantage over Tamoxifen.
My MO has occasionally tried to push me off on the NP. She's fine, but you know what? I'm paying to see the MO! I understand if I'm showing up with an unscheduled problem, but routine appts should be handled by him.
I had chemo Dec-Apr, surgery May, and started Tamoxifen in Sep. I've been on Herceptin all along. I was planning to wait until it was done, but the MO wanted me to start. I said I would try it.
My biggest problem has been severe leg cramps - started almost immediately after beginning Tamoxifen. They seemed better for a week or two and then came back with a vengeance. I also developed the vaginal discharge and have recently noticed some concentration problems.
CCNC - I've had some difficult visits with my MO as well. He once told me that I shouldn't read (!) and does seem much happier if I just go along. But I've been trouble from the start - every weird and unheard of SE is my lot in life. He has pretty patiently listened but also has some definite ideas about things.
wallan - You can take Tamoxifen if you're postmenopausal. It's just the premenopausal folks that can't take an AI. I would think that if you are having this many problems with the AI then they need to do something else.
I will have to look into these studies. I just recently looked up a bunch of stuff about the effective dose of Tamoxifen. In my limited research, it looks like much lower doses may be just as protective. Anyway - I've quit the Tamoxifen as of today. I want to see how I feel without it, but apparently it has a pretty long half life. My plan is to restart at maybe 10 mg a day and see if the SE's are better.
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Chronic Pain, I am able to get second and third opinions and have already done that in several instances. This Doc was not on board with chemo at all, said my onco score was low at 17 and 19. I got a second opinion and he disagreed. It was put before the tumor board and my MO was overruled, I got chemo, then the same thing with the Her2+ he disagreed with my original diagnosis as well as the 2nd opinion and again agreed to treat it. I felt because my cancer was bilateral, metastasized to the lymph, and extranodal and I had one of those cancerous nodes grow from nothing to 2.6 cm in just 9 days. I wanted a systemic treatment. I have questioned everyone of his decisions and I know it bothers him. I keep trying, but it is very frustrating and stressful to have to check every decision your Doc makes. I wish I could just believe in him and accept he is right, but so far his track record isn't so good, I must keep checking everything.
Not Very Brave, Yes I was put on arimidex on March 22 prior to my bilateral mastectomies. It did slow the growth of my tumors prior to my surgery. It also tainted the pathology of my tumors and all the characteristics were much less virulent in the surgical pathology as compared to the biopsy pathology, the biopsy path was prior to arimidex) I took it every day until chemo was started in the middle of May. Actually, I think I stopped a few days prior. There were issues with arimidex, it raised my blood pressure and cholesterol levels to dangerous levels. I was even put on a blood pressure medication. When the arimidex was stopped I also stopped the BP medications and my BP went back to normal. It has been normal ever since. So unless I want to take a statin and a BP medication, I cannot take arimidex, and it has the same issues with cognition as tamoxifen does.
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In my 6 years of being a BC patient, I have discovered that you'll be hard pressed to find a doc that will do or say anything that is not just simply "Standard of Care". ie: one size fits all for everyone. I suppose in their defense they have their liability to consider, but that doesn't do us any good. I decided a while back I'm doing my own thing, I listen to their recommendations, and decide for myself if I want to go along. I am willing to accept the outcome. Our doctors see 100's of patients a day, and are bound by standard of care treatment. Cancer 101. Anything else is up to us.. You won't get much else from them.
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Wallan - Your description of the heart rate change, lightheadedness, nausea sounds a lot what happens to me during a hot flash. First my heart starts racing, then I feel sick to my stomach, then I have tsunami heating up (to the point my DD could tell I was having a flash by the heat around me) then the dripping sweat. It started when I had an ooph and started on arimidex. I’ve been off hormonal since April, but still have the “fun” hot flashes.
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Jackster51....I completely agree with you. We all have to make our own informed decisions and that does not always mean following standard care. We all have different circumstances and IMO it should not be a one size fits all treatment plan. I respect and support all decisions made. Good luck to all navigating this complicated disease.
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Thanks Farmerlucy..
I'm sorry to hear of all you have been thru. Holy smokes!
I did wonder if that is a "hotflash" for me because I don't get hot and I think I must not be getting hotflashes. Well, not conventional ones anyones.
And then today, low and behold while I was out Christmas shopping, I had a real hotflash. OMG. Lightheaded, fast heartbeat, and hot and sweaty and I needed water - like now. So, maybe they have started now to be more conventional type hotflashes..
Sigh.. what we go thru.
I do agree with others that doctors follow standards of care and do not customize treatments. Sometimes getting a second opinion means nothing because of this. On the other hand, I had stage 3 BC last time and this time stage 1 multicentric with IDC, DCIS, LCIS and ILC in the mix. 5 tumors in all. The oncotype dx test was 14 and this was considered low so I had no chemo this time. I do wonder if this is the right treatment for me and if I shouldn't have had chemo considering my history. And it seemed like my oncologist was not too familiar with my history because when I go for my followup checkups she says everytime, when was your last mammogram, yet I have had two mastectomies. I tell her that and she says "why did you have bilateral mastectomies?" and I have to remind her this is my second time and she looks at my chart and flips thru the pages. I wonder if another oncologist would be better. But, its hard to get another here. It is scary when you need to trust these doctors know what they are doing.
wallan
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Wallan,
I am so sorry you have to do this all over again.
Did you religiously take your tamoxifen after your first bout with BC? Are you on Arimidex now ? Is this a different Oncologist from 2004? If so, why did you switch?
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Hi carmstr835:
I did religiously take tamoxifen for 2 years, then a hysterectomy/oophorectomy, then 3 years aromasin. I also had AC/T chemo, and radiation. And I had a mastectomy and lymph nodes removed. 18 of them. I went to a naturopath and followed her advice and I also starting jogging and weight lifting. I got regular massages, did Reiki, tai chi, music therapy, yoga. I ate whole foods for years. It was a blow when the BC returned in the other breast. However, I was told it was a new cancer, not a recurrance. So, I guess you could say I have not "recurred". It will be 14 years in March since the first time.
So, why did I switch MO's? It wasn't my choice. I have a different family doctor now who referred me to a different cancer centre because it was closer to my home. And from there, I was assigned my current MO. She has all my old records because this cancer centre is affiliated with the bigger cancer centre I went to before. I was, at first, relieved that I would get a new MO anyways. My last MO was very pessimistic. She kept telling me she did not think chemo would work and that I would likely survive about 2 years. I asked her at the time why she said that, and she said I had grade 3, large tumor, positive nodes, extracapsular extension, lymphovascular invasion and I was relatively young, 41 at the time. I was at that time ER+/PR+ her2. I was so upset by this news each time I saw her, the nurse referred me to an oncology social worker at that time. This social worker told me my MO thought I was in denial. In any event, after I saw the social worker, the next time I went for chemo, there was another doctor who checked me over. She worked with my MO, but I did not have to chat with my MO anymore. In fact, I did not see her again. I do remember at 5 year mark, this new doctor told me they were amazed I did so well. I wonder what would have happened if I had been referred back to my original MO, meaning I wonder what treatment would have been recommended considering her outlook. In a way, I don't want to find out.
This time around, I had another mastectomy and SNB. I am highly 100% ER+/PR+ her 2-, grade 2. Node negative. Oncotype dx 14 and like I said multicentric. I wonder if I was last time too because there was questions as to how big my tumor was back then. The MO back then said I had two tumors, one 4 cm and one 3 cm, so technically I was stage 2b. But the breast surgeon said it was 7 cm solid, not two and I was stage 3a. The pathologist said stage 3a. So who knows and does it really matter in the end?
I was put on Arimidex this time. My current MO says tamoxifen is not recommended for postmenopausal women. I know this is not true so I question her now. It really is about trust. I am also undergoing reconstruction for both sides. This has been something else.
what about you?
wallan
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Thanks for your info. It is really hard to hear you did all the right things, your Doc was aggressive in treatment and you still must deal with breast cancer again! I am just very concerned. I was told I really did not need chemo, or even a mastectomies in the beginning, nor did they believe I was HER2+. I did many second opinions and did lots of research. I had more than 1 type of tumor in my right breast, and another type in my left. They believe I have 2 completely unrelated cancers. One is partly Her2+ the other is Her2- both are Estrogen + but only 1 is progesteron + They are different levels of Hormone +, one is only 60-70% + the other is like 80%+ for estrogen. The biopsy is much different than the surgical pathology. My 2nd opinion Dr believes my right tumor is heterogeneous and several types of cancer within one tumor, there was also DCIS in both breasts as well as IDC and several spots that would have needed to be biopsied if I chose a lumpectomy. The reason I chose mastectomies was I did not want the radiation treatments, but that was not an option after surgery because of the lymph involvement and the extranodal extension. They were pretty sure it was lymph involved at the tim of my surgery and they were right. I ended up with TC as my chemo about 6 weeks after my bilateral mastectomy and after the results of the 2nd opinion pathological reports came back HER2+ it was changed to 4 more cycles of TCHP and now a year of HP. The radiation was 7 weeks, and they stopped the perjeta during the radiation, so I missed 2 cycles of perjeta. They now want me on Tamoxifen or raloxifene but I am holding out until I Get more information.. You did it all and it still came back.... I am probably not going to do the hormone treatments. I am fasting for 1 week every 3 weeks though just coffee and water and I am hoping it will give me an advantage over this disease. It also helps with chemo side effects. I can't take arimidex because it raises my BP and cholesterol level. I wish you the very best and hope you will beat it again! BTW I am considered stage 2B.
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wallen...I'm so sorry to hear about your recurrence. Its certainly NOT your fault. Its just another example of the fact that there are no guarantees even if you do everything in your power to avoid a recurrence. Its just not fair! We need better treatment options and yes a cure for this complicated disease. Good luck to all.
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My MO replied to my email. But it was not helpful. I got 3 sentences. He said the scans were compared and they disagree with the outside reads, He said the liver scans still looked like cysts. I want to know if they grew or diminished. The reports were very different, so the actual scans need to be compared, in my humble opinion. No idea what scan or what results he disagreed with. I would like to see the study. No discussion at all of the 2.8cm lesion on the adrenal gland. I wanted to know if it was visible in May, no answer to that. He said the lung lesions concern him and probably will do a biopsy or better yet just remove it. He will do another CT scan in 6 more weeks, if I still have symptoms. He refuses to even discuss the MEK inhibitors and wants me on tamoxifen or raloxifene. That was it. So looks like I will just go without hormone therapy and no reconstruction surgery because I don't want to miss 1/3 of my perjeta treatment.
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Ah carmstr:
It is so hard to trust the doctors. I know. Hugs to you.
Just so you know, 8 years out from my first BC, I had lung nodules that they found when I had an xray for bronchitis. They followed them for a couple of years by CT every 3 months the first year, then twice the second year. No change in size they said, so my GP said they are benign.
But during the last CT scan, they found a "mass" on my adrenal gland. My GP said its benign and very very common. So fast forward to now. I was being investigated for heartburn issues and they did an abdominal ultrasound just before I was dx with the 2nd BC. The mass on my adrenal gland was still there, so my GP wanted me to have an MRI. It never happened because of my 2nd BC dx; but my GP told me he thinks its benign and nothing to worry about.
So, I just let it go.
Today I feel how powerless we are all over this breast cancer stuff. We have no control even though we think we do and try to do everything right. Don't get me wrong, I still like to be the healthiest I can be. But I now know its out of my hands if breast cancer will kill me or not. It is what it is.
wallan
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Thanks for the info Wallan, it does make me feel better that these are common and not necessarily cancer. The thing that bothered me the most, is the NP stated that diagnosing stage 4 breast cancer now or months later has no bearing on survivability. I believe that is probably true, but I want to know asap. Our life plans depend on us living, I want to plan accordingly.
For instance, I would not do reconstruction surgery, a 10-12 hour surgery with 3-4 month recovery time if my life is going to be chemo and treatments as long as I live. I want those 3-4 months of healthy living.
It is almost like they don't want to know until the symptoms are enough to have deal with. No sense in looking for cancer. If it is going to metastasis, eventually we will get the symptoms. Keep us in the dark till it is an undeniable issue. I think this is the common way to deal with us. Let us live without the knowledge of it spreading as long as we can. Why else did she say, the Pet scan and cancer marker tests would just cause me more anxiety. She must have assumed it was spreading and wanted me to enjoy the holidays. She was wrong, my anxiety was caused by her lack of concern and not knowing, and the results were very positive for the pet scan as well. All negative, my anxiety is gone.
But isn't this like living with your head in the sand?
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Hi carmstr835:
I'm happy to hear your scans are clean. That is absolutely anxiety relieving.
I was told too just to live my life and not worry by my GP. That if I have a recurrence, symptoms will show up. My GP also said scans give you more radiation that is not great, so try to avoid if you can.
So, I took the advice of someone on these boards. If I have some weird symptom that bothers me, I write it down somewhere like my journal or phone calendar and I am sure to date it. Then I forget it. Put it out of my mind. I may take an Advil or something if its pain, but otherwise I go on with my days. If in three weeks time it is still there and/or worse, I go to my doctor.
I have heard too that it doesn't matter when they find the recurrance - very early or later on. Its your response to treatment that matters.
For myself, as time goes I don't worry about it so much. One day at a time is my mantra.
wallan
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KB870:
Thanks so much!
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Thanks Wallan, your post gives me perspective. I think I can see the value of the 3 week symptoms idea, I like it.
I have just been scheduled a full hour appointment with my oncologist for tomorrow. Not sure exactly why, but I think it is good. I get a chance to see and talk with him about all these issues and several new ones.
I was recently hospitalized twice, once for chest pain, and another for a heart rate of 226. No idea what caused either one, but I was discharged after a couple days each time. I have an appointment with a cardiologist tomorrow as well, I think. I feel fine currently, but would like to know what caused it. Perhaps that is the reason for the 1 hour appointment. I hope it isn't related to my perjeta ,or herceptin, I really need to be taking these. We will see. He might have more info regarding the hormone therapy too, he knows I am planning to pass on that treatment. But I will hear him out and these new developments might be cause for reevaluation.
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IIRC, Michelleincornland was perimenopausal at diagnosis, and eventually underwent an oophorectomy to put her into menopause.
It's not that tamoxifen is "not recommended" for postmenopausal women--until a bit before the turn of this century it was the standard hormonal therapy for early (non-metastatic) breast cancer. Rather, studies have shown that for postmenopausal women, aromatase inhibitors are more effective than Tamoxifen in preventing or delaying recurrence.
I am 12 years post-menopausal. I'm finishing my second year on letrozole. No hot flashes (just the occasional non-drenching night sweat, which a ceiling fan or A/C alleviates), mild exacerbation of existing arthritis, a trigger thumb & forefinger (held at bay by cortisone shots), slower metabolism, and maybe some hair thinning (but my stylist remarked on that before I even had cancer). I did not get weakening of my bones, because I had one Zometa infusion and two (thus far) Prolia shots--which actually improved my osteopenia.
One effect I did not get (thus far) was brain fog. Maybe because I am a voracious reader and a puzzle addict--the tougher the better (acrostics, diagramless and British cryptic crosswords). I play a lot of solitaire too, as well as guitar & dulcimer; and I do write songs, though not as prolifically as in my youth. As long as I keep my brain cells & muscles busy (going back into the gym after I ditch this cold), I'm confident that I won't get "chemo brain" from anti-hormonal therapy. (I suspect that in patients who'd previously had chemo, just as with hair loss or delayed regrowth the mental side effects of anti-hormonals might be magnified).
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Hi, just as Chi Sandy said, I was not in or anywhere near menopause when I was going to start Zoladex shots to shut down my ovarian function, followed by an AI. We found mild osteopenia in my hip bones and decided that Tamoxifen was the best choice for me. It was my choice to have the hysterectomy/oopherectomy because of my age and no timeline for stopping my cycles. My mom had a cycle at 75 that lasted for about one year. She ended up with a d and c of her uterus. I had to take the ca125 tests every year, because of my lack of menopausal indications. A/k/a, we did not not why I was not going into menopause and had to be sure it was not something sinister. The whole process was quite stressful. My obgyn/MO, had hoped that rads would put me closer, but it did just the opposite. One of my larger fears was having a child at over 50, as my sister had one in her 40's.
Many women of all ages take Tamoxifen. It has the longest track record with the most studies showing its efficacy. I did not want to take it initially, and avoided it like the plague because of all the bad press. I am doing great, my labs are excellent, I got my "see you next year at my last mammogram," so life is good. I am very active, social and creative. There have been no negative impacts from taking Tamoxifen.
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