Pros and Cons of Tamoxifen
I have read and read and read and would love to get someone's opinion on not taking to TAmoxifen. I'm 56, ER+, but my OncaType is 9 and I have just finished my radiation and feel great! I was low risk to begin with and the cancer was very contained. The side effects of Tamoxifen are absolutely terrifying for me. After finally surviving, being happy again, why would I torture my body to lower the risk of reoccurrence. I read someone say they'd rather lose their breasts than their hair. I feel like I finally have my life again, I can start getting the weight off and hiking again. All the possible side effects sounds like it will make life much worse. Looking for someone that is similar age group.
Comments
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Your Oncotype Score is based on the assumption that you will use Tamoxifen or an Al for 5 years. If you don't do that your odds of recurrence go up. I have been on Tamoxifen and Aromasin for six years, with no serious SEs. But it is obviously your life and your choice.
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Hi llwilson, we are in different situations diagnosis-wise, but I struggled with tamoxifen at first for many of the same reasons you mention. I can't say what I would do in your situation, and everyone has to make their own decision that is "right" for them.
I am 34 and have a high oncotype so I did opt to take tamoxifen. I almost quit taking it a couple of times, but my surgeon and my oncology NP encouraged me to stick with it. They said the side effects might resolve as my body adjusts to the medicine. In my case, they were right: after a couple months of an adjustment period, I didn't really have any side effects from it at all. You might try the tamoxifen and see how you feel - maybe you won't have any problems, and you'll be able to reduce the risk of recurrence! Either way, best of luck to you on your decision.
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Those with hormone receptor-positive, HER2-negative invasive breast cancer may receive the OncotypeDX test for invasive breast cancer.
All those receiving this particular test should be certain to obtain a complete copy of their original Oncotype test report for their review and records (not some partial information copied into a patient portal with risk of error). They should confirm their name on the report, the proper lymph node status, and all other material information.
The OncotypeDX test for invasive disease and the report content is designed for use in certain hormone-receptor positive, HER2-negative patients whose distant recurrence risk warrants a recommendation for 5-years of initial endocrine therapy under clinical consensus guidelines, and in whom chemotherapy would normally be considered or recommended based on clinical and pathologic criteria alone under clinical consensus guidelines. The results can further inform decisions about whether or not to add chemotherapy to endocrine therapy.
A patient may still elect to decline endocrine therapy, if they do not feel that the absolute benefits outweigh the risks in their particular case (based on a personalized risk/benefit analysis). However, it is important to understand that the reports do not include any estimate of risk without endocrine therapy.
The risk information in the reports is based on clinical trials in which all of the patients were assigned to 5-years of Tamoxifen (either 5 yrs of Tamoxifen Alone or 5 yrs of Tamoxifen plus Chemotherapy). Thus, the test is said to assume receipt of endocrine therapy as noted by pupmom.
If no endocrine therapy is received, a person's risk would be much higher than indicated in their report.
Your Medical Oncologist can provide an estimate of your risk with no endocrine therapy. The difference between your risk with endocrine therapy (after all other treatments) and your risk with no further treatment corresponds to the "absolute benefit" of therapy your case, which in turn should be weighed against the risks of side effects of treatment, in light of your personal risk tolerance.
The first graph in the node-negative report provides information about the average 10-year distant (metastatic) recurrence risk that is associated with your Recurrence Score (with Tamoxifen Alone). However, there are additional risks that are not included in this value, such as the additional risk of same in-breast recurrent or new disease, and the additional risk of new disease in the contralateral (opposite) breast. Endocrine therapy can reduce these risks as well, providing additional potential benefits. Therefore, you may also wish to request personalized estimates of these additional risks as well (a) with endocrine therapy; or (b) without endocrine therapy to better understand your overall risk/benefit profile from treatment.
Node-negative Report Content - Nature of Risk Information Provided with Endocrine Therapy (Tam) Alone
If a person has node-negative disease, then they would receive a node-negative Oncotype report.
The report title at the top of page 1 should indicate that it is a "Node Negative" report if you are node-negative:
Here is a screen shot of the first graph from the current node-negative sample report on-line (found here). It illustrates the results for person with a Recurrence Score of 10, which is associated with a 10-year Risk of Distant Recurrence of 7% (95% CI: 4% - 9%) with Tam Alone (see graph and printed risk information to the left of the graph):
Reading off the graph of this node-negative report, a Recurrence Score of 9 would be associated with a 10-year Risk of Distant Recurrence of around 6% with Tam Alone (i.e, WITH Tamoxifen treatment). Please check the actual content of your report for the precise numbers printed to the left of the first graph.
The first graph showing the relationship between 10-year distant recurrence risk and Recurrence Score comes from Figure 4 of Paik (2004), a study of patients who were all assigned to receive 5-years of Tamoxifen. Therefore, the 10-year distant recurrence risk without any endocrine therapy would be higher than indicated next to the first graph of your report.
If no endocrine therapy is received, a person's risk would be much higher than indicated in the report. Please obtain an estimate of your risk(s) without endocrine therapy from your medical oncologist.
Tamoxifen or an Aromatase Inhibitor:
Although the reports for the Oncotype test for invasive disease currently feature "validation" studies in which Tamoxifen was used, this reflects historical and practical considerations of clinical trial design. In current clinical practice, the use of Oncotype Recurrence Score information does NOT restrict choice of endocrine therapy. Thus, patients receiving the Oncotype test for invasive disease should receive a case-specific recommendation for endocrine therapy that is appropriate to their particular situation (e.g., Tamoxifen, an Aromatase Inhibitor).
For example, here is a later Oncotype validation study conducted in patients who had received 5-years of the aromatase inhibitor Anastrozole. This study used samples and 9-yr recurrence rates from the tamoxifen arm and the anastrozole arms of the ATAC trial, in node-negative and node-positive postmenopausal women with localized breast cancer.
>> "Prediction of Risk of Distant Recurrence Using the 21-Gene Recurrence Score in Node-Negative and Node-Positive Postmenopausal Patients With Breast Cancer Treated With Anastrozole or Tamoxifen: A TransATAC Study"
>> Dowsett (2010): http://jco.ascopubs.org/content/28/11/1829.full.pdf
In addition, the prospective TAILORx trial, in node-negative (N0), hormone receptor-positive, HER2-negative disease, permits a variety of endocrine therapies. The 5-year results for those with Recurrence Scores of 0 to 10 assigned to receive endocrine therapy alone were reported here:
>> "Prospective Validation of a 21-Gene Expression Assay in Breast Cancer"
>> Sparano (2015): http://www.nejm.org/doi/full/10.1056/NEJMoa1510764#t=article
>>QUOTE: "In the low-risk cohort of 1626 patients, endocrine therapy included an aromatase inhibitor in 963 patients (59%), tamoxifen in 560 (34%), sequential tamoxifen followed by aromatase-inhibitor therapy in 13 (1%), ovarian-function suppression in 44 (3%), or other or unknown therapy in 46 (3%)."
Thus, if post-menopausal (as defined in the NCCN guidelines for breast cancer), then another point of discussion would be the option of an Aromatase Inhibitor ("AI"), which may provide some advantage over Tamoxifen, particularly for those with Invasive Lobular Carcinoma ("ILC") (see e.g., Filho (2015).
The AIs (Letrozole (FEMARA); Anastrozole (ARIMIDEX); or Exemestane (AROMASIN)) have different drug-drug interaction profiles from Tamoxifen, and different side effect profiles from Tamoxifen. Such differences can affect recommendations. You can request information about side effects and their incidence, and whether you may be at increased risk of certain side effects in view of your personal medical history (e.g., co-morbidities) or family medical history.
Given the above, any post-menopausal woman who receives a recommendation for Tamoxifen should request a reasoned explanation of why Tamoxifen is preferable to an Aromatase Inhibitor in her particular case (and seek a second opinion if it is suggested that reliance upon the oncotype test restricts her choices.)
I am a layperson with no medical training, so please confirm all information above with your Medical Oncologist to ensure receipt of current, case-specific expert professional medical advice.
Best,
BarredOwl
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dear Barred,
Thank you SO much for posting that in time for me to use for my final review process! I just finished up my chemotherapy dec 4 and was on tamoxifen and armidex but chemo brain is still preventing me from making sense of all the files I grab for the master report.
I will be sure to mention the amended risks of recurring after my double mastectomy and potential lymph removal is 5 or less projected from palatable mass reduction so massive it might be just pins they find so I am a gift waiting to be unwrapped at the moment! I thought it was an adorable way to describe it but you can RETURN a gift! This is a complete leap of faith for me and I had my mother by my side with the same team of doctors that cured her 3 years ago!
I was the confirmation case my family needed to prove braca 2 with my stage 3a invasive ductal carcinoma in left side lymph system largest tumor was 5.0 in my armpit behind muscle making it easy to mistake for joint pain, and hard to find on traditional mammograms so my calcifications were tested and benign several times as I was dismissed for my concern about my nipples and the fact that I had to bind off and not breastfeeding my last child made my case progress so significantly because the advice I was given by my ob gyn doctors was based on incorrect outdated industry standard of care still defended by doctors fearing accountability as a whole for delaying those updates for profit!
If the Medicaid insurance would have covered the genetic test for braca2 gene when she was being treated 3 years ago I might have had a chance to catch it sooner than stage 3!!! They didn't KNOW so I can't be upset I was told to my disgust.
Funny how "I didn't know it was WRONG" was NEVER an acceptable legal defense in ANY OTHER profession containing the lives and futures of those put at their mercy during daily business as usual attitude of healthcare treatment in action.
I made it easier for them to understand by making SURE my ENTIRE bloodline can now get tested as soon as they all wish FREE now.
I have several confirmed cases of my age range thanking me for the opportunity to help ourselves and our children properly understand our risks in the future as WE see fit with the information provided by OUR medical reports instead of waiting to be harvested of the same late stage diagnosis for failing to understand it long after all hope of positive futures is lost on profit!
I cannot deny how successful my treatments have been with full palatable mass reductions! or that all the fantastic people working with us care about us like family and we are all learning together through MY journey how to make it easier and one day unnessicary for other patients!
My first 4 treatments were very heavy with armidex plus a nuclear push every 2 weeks, then dropped down to just tamoxifen infusion weekly. My side effects were SO severe that I considered stopping treatment several times, and that was after the switch so I would have rather done more of the severe treatment for less time if I had a choice on how they hold the chemical bat they beat me with!
My blood numbers looked so good they all told me it didn't look like I was on active chemo the whole time but I felt worse than I ever have in my life from the side effects mostly. I finally got in to palliative care for pain management on an appropriate level 2 treatments from being finished!! I had to fight a LOT of moral indignation on EVERY level of care before my pain was properly addressed in my weakest position and if it wasn't for my great therapist I never would have achieved success on SO many levels of this problem.
I have posted a few other places in more detail about that but it was a true patient victory I just had to share!
My advice to ANYONE going near that drug to have professional pain management in place before consenting to tamoxifen treatment of ANY kind.
Oh, one more personal experience they can't admit as medical fact yet I found to help EVERYONE that took the nulasta shot the day after treatments with a very unique crushing bone pain side effect, I took one Claritin allergy pill (12-24 hr NOT extended release tablets ) the day before neulasta injection and one the day of injection after dose is delivered completely eliminated the side effect and made pain medication unnessicary for me! I just wish I heard the rumor before my last 2 treatments with it!
I will check back in and let you know what my actual numbers and margins were after surgery after I am sure to get my hands on full hard copies of my test results AND films! You paid for your pics and should get to keep a copy! They come in handy decades later in my case, when I showed my old films to my docs their chins all hit the floor because I HAD them when they were not transferred with my master file! How do you loose digital pics in a medical report when I have films they can't touch of same info missing?
EXactly, its more the healthcare industry that needs a tighter leash because decisions can only be made on information available to doctors AND patients! For what it costs we should NOT have to do their jobs for them too
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Faith, just so we do not confuse anyone, I think you are talking about different drugs when you say infusions. Correct me if I am wrong, but Arimidex and Tamoxifen are only prescribed as pills (or liquid in the case of Soltamox). Perhaps you are talking about Taxol and Abraxane?
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Hi llwilson. My risk of recurrence was 11 on Oncotype DX, but as others have pointed out that is if you take Tamoxifen for five years. If you don't take it your risk roughly doubles.
I'm going to start on January 1 and see how it goes. Many have advised me that if you take the pill before bedtime, instead of in the morning, side effects are greatly reduced.
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hi perigrinelady
I might have confused the pre and post surgery treatment drugs names but I have had both armadol and tamoxifen in bi weekly 4 dense dose treatments with nuclear push, a huge canister injected by nurse over around 15 min in addition to infusion bags about 2 to 4 hrs, and nulasta shot set the day after. Weekly infusions of just tamoxifen were much worse for side effects but faster, 2hrs most times all given through a power port installed in the right upper chest because veins in arms could not withstand damage of total medication required in treatments.
I was a very aggressive case that found additional cancer on my right breast in the open chest MRI that my first MRI missed because I was flat on my back! The machine that found it was not available in my state where I was diagnosed.
it was a race from official diagnosis to get me registered with my mothers team of doctors, admitted ported and started on chemo this July as soon as I could complete diagnostics.
It's been s blur and completely overtook my world but my mom just went through this 3 years ago and took me through this the way only a mother can with unconditional love!
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I am opting not to take hormone therapy. I am afraid of the cognitive decline. Of course my MO is not too impressed, but he doesnt listen to what I say anyways. It is my body and if I get to stage 4, then I will, but if not, I am taking my chances with my fasting diet every 3 weeks and low carbs.
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hi ladies, I will fill in a few more details before I try to sleep again but having a hard time with that these days.
I am being treated much more proactive than my mother was because my cancer hit the lymph system on my left side and I confirmed the braca 2 gene with unidentified mutation is identical to the rest of my family that can NOW get tested for FREE whenever they are ready to know.
My mom had a lumpectomy and radiation and is now still cancer free on tamoxafin pills for a few more years. Now that braca 2 is confirmed they are all too eager to take ovaries out despite the fact that they are currently completely healthy in both of us. We are both done having kids so that's the industry standard reccomendatuon we were just given.
I am having a skin saving nipple saving double mastectomy and tumors and port removed in my first surgery when the spacers are put in they will bank nipples in pouch above c section and if tissue remains viable they will reattach after implants replace spacers in 2nd surgery a few months later based on how I heal.
I won't know my tumor sizes or margins until surgery is over on January 9 but if I have 98% clearance or better radiation won't be needed for me. It boils down to not worth the risk to my new implant for outdated radiation doses being the industry standard of care applied to all patients and should be more tailored to individual risk vs proven results based on updated treatment statistics. I saw the look in his eye trying to justify his treatments as I listened so WE both know what is not worth the risk vs the promise of benifit in question these days.
When we know better we DO better! That is why updating information treatment standards are based on actual current cases to treat the entire patient rather than the standard jigsaw pieces they know how to keep coming back for more
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IIwilson- I completed 5 years of Tamoxifen. I did have side effects. You mentioned hiking. I was able to continue hiking on the medication. I was able to continue running for about 3years on it. Can't really say that the Tamoxifen was the culprit there or just my knee & ankle getting older. You may very well have fewer side effects than I did. My list is quite long. Yes, I feel better now that I stopped the drug. You might just want to give it a try & stop if it gets too much. My oncotype was 4, but I had positive nodes.
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It’s an individual decision to take or not. I did take Tamoxifen for 5 years. Oncotype score was 11. I am 6 years out. So far no cognitive decline. I was unwilling to play Russian Roulette even with the side effects. Frankly I was scared not to. Having said I didn’t suffer with some of the side effects others have.
Joint pain, difficulty concentrating sometimes and sleeplessness were the only issues I had with the drug.
To each her own. Your body, your life.
Diane
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Hi Faithonfire:
Your profile shows Stage IIIC disease. It looks like you received some sort of "neoadjuvant" (pre-surgical) drug therapy regimen that included Tamoxifen (a form of endocrine therapy) and possibly other drug(s). In another post, you mentioned "armadol and tamoxifen." To my knowledge, "Armadol" is not the same as "Anastrozole (Trade Name ARIMIDEX)." Please ask your doctor.
Note that the test described above (OncotypeDX for invasive disease) is not recommended for use in patients with Stage IIIC disease, because it has only been validated in patients with earlier stages of breast cancer.
In addition, the graph and related studies that I linked to above did not include any patients with Stage IIIC disease (and none of the patients received neoadjuvant therapy), so the results do not apply to your particular situation.
There are other studies of various drug treatments that would have included patients with Stage IIIC disease and that inform current understanding of the potential risk reduction benefit of various systemic drugs treatments in such patients. If after surgery, your Medical Oncologist recommends continuing endocrine therapy in your case, you should not hesitate to request information about the potential "absolute benefit" of the specific drug regimen in your case (after all other treatments), and the incidence of severe side effects with that regimen, to better understand your risk/benefit profile from such treatment.
Note that if a person has had both ovaries removed (e.g., by bilateral oophorectomy or by bilateral-salpingo oophorectomy (removal of both ovaries and the Fallopian tubes)), then they are considered to be "post-menopausal" under NCCN guidelines for the purpose of endocrine therapy, and formally have the option of using a regimen containing an aromatase inhibitor.
Best,
BarredOwl
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Dear Barred,
The initial paperwork I have for my first batch of treatments listed it as armadex and it was all pre surgery treatment so far. My tumors were hard to find and the stage 3c paperwork must have been before last 2 biopsies on my right came back and they weren't official tumors on the right breast yet so those results didn't change treatment choice but did amend it to stage 3 a with pre cancer clusters indicating same need for double mastectomy once my genetics report showed I was a braca 2 with unidentified mutation.
I have 2 cousins one slightly younger the other just over 50 currently in chemotherapy for breast cancer awaiting their results from free genetic tests now. Several other members of our family have had breast cancer in the past 5 years and the genetic tests were not covered by insurance at that time.
it was a strange Christmas gift but seeing the insurance company eat crow to get them was priceless to all of us for generations yet to come finally!
We all have lots to learn about what we are going through and the ovary issue is one of our biggest concerns on both sides of the fertility issue so thank you for sharing your information!
Hormone therapy is a hot topic for our family too and the information we are finding on the subject is making our choices easier to debate until it's time to start.
I have surgery January 9 and will find out if radiation is needed or if I had a complete response as indicated.
Best of luck to everyone for the new year
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Hi Faithonfire:
Sending my wishes to you for smooth sailing in your upcoming surgery and for the best possible pathology results.
🍀
BarredOwl
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Im 51, taking Tamoxifen, 4months now. I switched to taking it in the evening. I know some who split the dose. Side effects for me are incredible dryness in my sinuses and my lips and some dizziness. So far very doable for me. Good luck with the surgery
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Faithonfire- My MO told me to take Claritin on days 1 thru 5 to help with the bone pain. I was already taking it daily for allergies, so just continued to do so. No pain whatsover with the Neulasta. I don't believe it is a rumor. One of my nures said that their Neulasta drug rep actually told them to tell all patients to do this. Very thankful it worked!
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Thank you Barred, and everyone
So glad to hear it helped! I was told about it in time for my last 2 neulasta shots and it was a remarkable difference with Claritin in my system.
I'm still loosing weight so I am doing my best to get anything I can eat to stick before surgery but I'm still pretty nervous about having surgery so it's a daily battle for me to stay strong.
I had a very hard time during the holidays because my husband and children would not send me a single pic or respond in any positive way during my treatments. They did not take the news of my diagnosis well at all and won't talk to me after seeing me without hair. I have never been away from any of them this long before and now they blame me for abandoning them. I can't understand it. I just hope time will help them realize why it could not wait one day.
I'm just so dissapointed in my husband I don't know how to handle his reaction. I have done my best and can only heal myself and pray he makes it all up to me. I know I am only fooling myself, but I won't give up
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Hi Ladies
This is my first time posting to this forum. I'm usually on the Stage 2 sisters one. I had a unilateral mascectomy with 13 lymph nodes removed. One was positive. So, stage 2A with a 1cm tumor. I had an onco score of 14, and my onco said no chemo. I had 28 radiation treatments. I am premenopausal, and have been on tamoxifen for since April 2017. Was diagnosed in Feb 2017. It seems I see so many women with a similar diagnosis that do chemo. Due to my positive lymph node, I thought I would. However my onco said chemo would only help by 2%. So tamoxifen will be my saving grace, and I have not missed one dose, and don't plan on missing at all. My phone goes off everyday at 6:00 to remind me. I hate the hot and cold flashes. Also, my appetite has increased a lot, therefore weight gain. I hate that, but I will take it to lower my chance of distant reoccurance. Has anyone on tamoxifen, or any other hormone therapy gained weight? Is that normal? Did anyone skip chemo with one positive node? Sorry this is such a long post. Isn't breast cancer so much fun? Sighhhh😂😂😂. -
Faithonfire
I just read your post. Oh my god!!!! I can't believe it. Are you, and your husband under the same roof with the kids? How old are your children? I'm 48, and divorced with a 14 year old daughter. It was hard on her, and in the beginning, she was standoffish. Was not expecting that. She leaned more on her dad than me. As time went on, and the dust settled, I got my daughter back. She just did not know how to handle it. My mother and brother have been my support, and eventually my daughter. Cancer is also so impactful on our loved ones. However, they need to be very supportive of you. Your husband should be taking care of you. As the marriage vows go, in sickness, and in health. My ex husband and I get along very well, and he has been there for me. Have you and your husband communicated, and told him how you feel? I've read on other forums where cancer has split families apart. It astounds me. It just seems something this serious would bring our loved ones closer. I hope you all will work this out. What about counseling? I hope I'm not being offensive, I want things to get better for you, your husband, and your children. Support is so important with what we have all gone through.
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Jaymed, my stats are almost the same as yours, except I had 2 positive nodes. Oncotype 14 and tumor 1 cm. I had no chemo and am doing fine 6 years later. When the doctors explained the Oncotype Test results, it was obvious I was more likely to die from chemo than without it. That's the amazing thing about this test. We early stagers are spared the SEs of chemo, which wouldn't benefit us anyway, and potentially really harm us. Wanted to add that the tamoxifen hot flashes and weight gain get better after awhile. I rarely have a hot flash anymore, and when I do they are very mild. Nothing like what I experienced at the beginning. Best wishes!
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Thanks pup mom and jaymeb
I am doing my best to stay strong and get through surgery and reconstruction on the 9th as I stay with my mom and big brother during my treatments as I use the same team of doctors that cured my mom of identical breast cancer 3 years ago.
I was diagnosed in June 2017, and my husband of 18 years did not believe it at first and believed our 3 teenagers ages 13, son 14 daughter and daughter 17 that I was cheating on him when the reality was I had many doctors appointments before I got the diagnosis of stage 3 invasive ductal carcinoma, because I am a braca 2 just like my mom.
The behavior shift was so dramatic for my family and happened before my diagnosis because I was literally dying and called a lazy crazy liar doing this all to get attention
I had a part time union job and 3 teenage schedules to keep on top of house chores and my husband staying at his recently abandoned friends house as many days in a row as possible during the week claiming to save us money as he avoided all domestic problems and blamed me for all failures because I was there and loved him enough to support him trying to help his pal learn to cope as I wasted away to 105 lbs at 5'7"!
We opened our lives to help my husbands friend get over a bad breakup and he wound up convincing my family to ignore me and hate me for being sick so he could have his new playmates all to himself!
Found out a little too late that his girlfriend had a permanent restraining order against him, and he is a virtual stalker!
I did everything I could to be kind and supportive to this man out of respect for my husband and to be a good Christian as I always have been. I never have or would cheat on my husband so to be accused of that by people I love who only wanted to eliminate me from my own family was devastating!
So with no family support at home and teenagers that turned on me to try and end our marriage with rumors of infidelity, a severe diagnosis that required a LOT of heavy medications and me unable to stay vigilant enough to prevent theft,or trust with my care... I had no choice but to go stay with my mom and start treatments immediately because my cancer was so aggressive.
I hardly had time to grasp what was happening to me, and my whole world imploded while I watched helplessly as my worst nightmares came true! I could not wait for their social approval first or find a reliable team in my state to treat my cancer without their devotion to me surviving this and I was told I didn't even deserve a hug before I left!
I had ptsd for over a decade before this so I have put my family through a lot trying to deal with all that in cognitive behavioral therapy because it's the only medication free treatment option and it kept me safe in the worst situations so many times I was lucky to learn it before my diagnosis or I would never have made it through chemo even with an addiction specialist phd therapist working with me now!
He is shocked at my family's reaction too but said my kids are unable to face the risk my diagnosis places on their futures so it is easier to blame me for moral failings that justify their reaction.
I think it's safer to say they are pissed they have no new medicine to get their hands on and impress their new friends with emotionally abusing their sick mom!
My oldest daughter started online dating a boy who had divorced parents and the idea to split our marriage up for our own good was met with the perfect storm of circumstances that allowed it to go this far.
I have not had any emotional support from my husband since our anniversary he didn't visit me on, not a single pic of our home or tree or kids this Christmas, no New Years call to say I love you and now he won't even respond for weeks at a time and when he does it's hostile because I abandoned THEM!
I don't want to have to get a divorce and I still won't be able to travel after surgery so I am stuck in limbo for now and have to keep praying that God will set things right for my family.
I can't hold out much longer like this but if his parasite of a friend finally got arrested for violating his restraining order and bragging how easy it is to stalk others before I come home we might actually have a chance to save our family!
The man I married is still inside there somewhere and i love him enough to try to save our relationship and family from society's soulless modern attitude to simply replace me with a younger model to destroy!
They will face the reality that a disabled mother HAS rights and violating them will land them in a cage no matter how sick I am! That's the last thing I want for any of them but to prey upon your own family member for being too sick to stop it is something I have never seen until digital lives became more important than real ones these days!
I just don't get the goal of it all and I never thought I would have to tell anyone I was bullied by my own kids because they were raised better than that! My biggest mistake was trusting my husband to have my back and help them understand what I was going through instead of throwing me under the buss to be the popular absentee parent as the kids watch over each other now that I can't.
It will all work out in the end because I am not simply going to disappear and they will face me sooner than they think!
Wish me luck and I will let you know how it goes after surgery!
I keep thinking I will wake up in the hospital to everyone around my bed telling me they love me and want me to come home but I know if I wasn't even worth talking to on New Years they could all care less if I live through it at all.
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Good advice jaymeb. I too am appalled at the stories I have read like this. I agree what about the marriage vows or were those just scripted wordsfor the occasion?
One of my X neighbors went through something similar with her husband. They ended up divorcing. Def for the best.
I can’t conceive of anyone family member esp reacting this way. It’s unfathomable and frankly unforgivable. It’s like we asked for it. Yea right. We chose to be inflicted with BC.
I hope counseling helps. My husband didn’t hover over me but he has been supportive and loving. I know he’s scared too. I’ve always been the strong independent one. Now the ball is in his court at least for me to lean on for a change.
I am 6 years out last August so I’m feeling guardingly optimistic. I did take Tamoxifen and while it wasn’t a walk in the park it wasn’t that bad either. I no longer take it. My MO said no need for me to. Early stage, small tumor and low Oncotype score. I did have 33 Rads treatments.
So try and keep the faith. I know it’s hard but you aren’t alone. You have us. We know exactly how you feel. Been there done that.
BC doesn’t define you so you will make it through the process. We are testaments to that.
Diane
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I think I'm the one who said I'd rather lose my breasts than my hair.. and my hair is about 50% thinner than it was a year ago. Is Tamoxifen to blame? I think yes, it's a side effect, even though Komen's site says it's not. My onc said about 25% of women have hair thinning. That said, I have NO OTHER issues with Tamoxifen, so I'm in a struggle about it. I'm going to keep taking it and trying to find other ways to contain the hair loss. Tamoxifen was symptom free for me until about 15 months in... I figure I have about 40 months to go. I'm chugging along feeling totally normal on Tamoxifen - minus my now much thinner hair.
I recommend trying Tamoxifen before deciding. -
I have been taking Tamoxifen for 6 years. I have done well with it. I have read that it prevents my body from turning any remaining Estrogen into cancer. Studies have shown a significant survival benefit to taking it for 10 years instead of 5, so with my doctor’s approval I am taking it for 10 years instead of 5
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Faithonfire,
My thoughts and prayers are with you! It's hard to believe what is going on within your family but hang on & you are wise to focus on yourself and your health right now. As much as possible set those expectations of "normal" family interactions aside (like a New Years I love you) & get what you need from those who will give it freely, like your mom, brother, and us.
May God bless you in 2018, whatever that looks like for you, dear lady
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thanks so much everyone!
I just can't find the words to express my sorrow and my family here and friends have been great trying to keep me strong. It means a lot to me to know I'm not the only one to face such betrayal from my own husband and kids!
It's downright malicious at this point and my husband refusing to return my calls or deal with what our son said to me yesterday, has left me no choice but to ask for help he refused to provide from school instead!
I am more hurt than scared that my husband would use this as the excuse for divorce as soon as he found out I had to loose my breasts!! I know our children had a large part to play in splitting us up and that is the hardest thing to forgive them for one day.
I will you all know how it went after I get out but they might keep me a few days in the hospital after surgery. Mom will be there for me always, I honestly can't imagine my life without her!
I know our kids will come around with the right therapy, it's making them go I depended on my husband for while I was away during my treatments that I am at a total loss!m
I got too sick to make him want to try so that justifies everything they do to me. That was unthinkable advice 6 months ago to ANY of us!
I just hope I wake up to a new reality with my new body! The reaction was fueled by spite and took advantage of my devotion to this day! I won't let that change my nature or hope for a better future
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Faithonfire
I've been thinking of you, and praying. I'm just so shocked, and can't wrap my head around this one. You said that your husband had a friend, and how you tried to help him. Did you ever have a bad vibe about him before you found out was a jackass he is? What was your husband thinking? Like you, I like to give people the benefit of the doubt. Unfortunately, they can very much take advantage, and screw you over. In general, and especially with cancer, we need positive, and loving people in our life. We absolutely do not need negativity!!!!!! I'm so glad you have your Mom. My mother has been staying with me for almost a year. We do go back and forth to her home two hours away often. I'm on medical leave. I know she misses her house, as she is 73, and misses her own environment. I'm divorced with a 14 year old daughter, and share joint custody with her dad. I do have her mostly, as he travels more for work. We were married for 15 years, and I became unhappy. I think some of it was I felt so dependent on him, and always had to ask for money like a child. We were fighting all the time. So, I left. There was bitterness in the beginning, but for our daughter's sake, we finally came to an agreement. She was nine, and very impactful on her. What has helped her cope is how well her dad and I get along. A couple of years after our divorce, I wanted him back. I still do. He has moved on, but he said he would always be there for me, and he has never let me down, and very much a man of his word. Yes, he can still piss me off, and be an ass. I think all men can. When I was suspected of having breast cancer, he went with me to my biopsy. After I was diagnosed, he was there when I had surgery, and sat with me at my bedside working on his computer for work. He went through this early journey with me, and did not have to. I would give anything to get him back. I know for a fact if this happened while we were married, he would have stuck by me, no matter how I looked. Paul, my ex cannot understand why men would leave, or be horrible to their wives through such a serious disease. God, how I wish I could go back, but have to move forward. You will get through this. Thank god for your mom. I do wish Paul and I would have gotten counseling. That might have saved us. I just hate what situation you are in. I do hope, if possible, you two can save your marriage. I wish I would have. But I know there are situations where a marriage is so broken, it can't be salvaged. Do you communicate with your husband at all? Well, the most important thing now, is your health. You need positivity, and love. It might seem like it, but you're not alone. -
Faithonfire
I've been thinking of you, and praying. I'm just so shocked, and can't wrap my head around this one. You said that your husband had a friend, and how you tried to help him. Did you ever have a bad vibe about him before you found out was a jackass he is? What was your husband thinking? Like you, I like to give people the benefit of the doubt. Unfortunately, they can very much take advantage, and screw you over. In general, and especially with cancer, we need positive, and loving people in our life. We absolutely do not need negativity!!!!!! I'm so glad you have your Mom. My mother has been staying with me for almost a year. We do go back and forth to her home two hours away often. I'm on medical leave. I know she misses her house, as she is 73, and misses her own environment. I'm divorced with a 14 year old daughter, and share joint custody with her dad. I do have her mostly, as he travels more for work. We were married for 15 years, and I became unhappy. I think some of it was I felt so dependent on him, and always had to ask for money like a child. We were fighting all the time. So, I left. There was bitterness in the beginning, but for our daughter's sake, we finally came to an agreement. She was nine, and very impactful on her. What has helped her cope is how well her dad and I get along. A couple of years after our divorce, I wanted him back. I still do. He has moved on, but he said he would always be there for me, and he has never let me down, and very much a man of his word. Yes, he can still piss me off, and be an ass. I think all men can. When I was suspected of having breast cancer, he went with me to my biopsy. After I was diagnosed, he was there when I had surgery, and sat with me at my bedside working on his computer for work. He went through this early journey with me, and did not have to. I would give anything to get him back. I know for a fact if this happened while we were married, he would have stuck by me, no matter how I looked. Paul, my ex cannot understand why men would leave, or be horrible to their wives through such a serious disease. God, how I wish I could go back, but have to move forward. You will get through this. Thank god for your mom. I do wish Paul and I would have gotten counseling. That might have saved us. I just hate what situation you are in. I do hope, if possible, you two can save your marriage. I wish I would have. But I know there are situations where a marriage is so broken, it can't be salvaged. Do you communicate with your husband at all? Well, the most important thing now, is your health. You need positivity, and love. It might seem like it, but you're not alone.
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Oh no, I'm so sorry, don't know how this posted twice, must have hit something on keyboard.🤦♀️🤦♀️
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Dear Jaymeb,
I appreciate all the support it means so much to me!
And to answer a few questions I can't blame any one thing for our current situation it was more like the perfect storm that allowed things to go off the rails this bad.
Yes we knew my husbands friend for years as he had his kids and he helped him get better job with his company etc, then she leaves him suddenly and takes kids, furniture very harsh breakup so he is devastated and bitter so we have him spend time with our family to cheer him up. The beginninong was fun,we adopted him which worked for a while as my husband and I noticed some strange habits he had but slowly he played us against each other and I refused to flirt or lead him on so I wound up eliminated from my own family by a person that convinced them all I abandoned THEM so anything they do to me is justified!
Turns out this freak is an online stalker and controls more of our family than anyone cares to admit! When I told you my daughter turned her back on me for her graduation and wouldn't even hug me.. had HIM sitting in my seat with our kids and my mother brother and I on the other side of the auditorium where she would only flip us off! This was all about a week before I was diagnosed.
I was SO sure that once they knew it was real and beyond my control they would change their attitudes and just be there for me any way they could!
I was wrong and cry every day because I can't travel and that's the ONLY way things could have gone this far! I just fell for Satan in a Sunday hat leading my family down an online bully bonding tactic and it slowly cost me everything in my life I was trying to live for! The worst part was I was always kind to him and he used that to kick me when I'm down in the worst possible way because a permanent restraining order protects his baby mama!
It won't be so easy to pull off once people see me again and know the truth of how I spent my time, and the fact that they didn't visit me ONCE but I abandoned THEM!
I ran their entire world and my every reward was a do over that never happened! Not fulfilling a promise makes it a confirmed LIE right?
suddenly I'm unable to do anything right and my basic needs were being denied because I fail to deserve fair treatment until I EARN it! The sicker I got the easier it became to take advantage of my symptoms to flair up by specific abuse used to manifest predicted response to justify selfish behavior!
It's going to be put right soon so I just have to hang in there and KNOW lies can't change the truth about my integrity or how I have been spending my time. I love my husband and I know he loves me too he just can't escape the social pressure that is changing his personality because it's real easy to act big behind a tiny screen! Dragging people out to the reality of accountability for their online lives and the damage it can do if not stopped.
Thanks for keeping me strong and in the right perspective this is all so crazy but it really can happen that fast
I will do whatever it takes to be vindicated and finally treated with the love and respect I not only deserve, I now DEMAND to be a part of my future!
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