Stage 1, grade 1 and pre-menopausal
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Hi everyone,
I am stage 1, grade 2, ER+/PR+/HER2-. I did double mastectomy, radiation, no chemo. I am currently taking Tamoxifen for 7 months and have not had a period for 2 months. My doctor has checked my hormones by blood two times and both times the estradiol level is very high. I don't know if Tamoxifen is fooling the ovaries now to make more estrogen and I did not have my hormones checked before I started Tamoxifen. Is Lupron or Zoladex an option for me? Which one has less side effects? I noticed Annicemd is taking both Tamoxifen and Zoladex. Any input is appreciated.
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Hello -
new2bc Somebody more knowledgable about OS than me will venture along soon to better answer your question about Zoladex/Lupron. To let you know my experience, I was pre-menopausal, age 49 when diagonosed Stage 1 ER+/PR+ multi-focal, had a BMX, low Oncotype DX scores, no chemo or rads. Tamoxifen was prescribed and ovarian suppression was suggested. I believe that we are still waiting for clinical trial results to give more detail on ovarian suppression. There are several on this thread that are experts in this area.
It's been awhile since I've checked in here, have had a difficult few months with a family tragedy. A story for another time ..... needless to say I haven't thought much at all about BC the past 6 months.
I do have a question for those knowledgable about ovarian suppression through Zoladex/Lupron treatment. I have had monthly injections since September 2012 on a regular 4 week schedule, and my aim is to complete two years total of this treatment. At age 52, I would consider continuing OS longer, depending on what my MO in the U.S. says. I have been getting OS treatment in Budapest, where I currently live, and alternately in the States if I'm there at the time when an injection is due.
At today's appointment, I got the injection and my Budapest oncologist let me know that she will see me again for an injection in either 3 weeks or 6 weeks - she will be on vacation and cannot see me at any other time. From what I have heard, these injections need to be given on a pretty tight 4 week schedule and not varied. This MO says that it doesn't really matter. Am I getting the run-around from this MO? I think it may be time to find somebody else to administer these injections. Or is it not really a big deal to vary the time schedule with OS?
Thanks for any responses. Hope that everybody is doing well.
*edited to correct name
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joy...sorry to hear about your heartache. Annice might chime in with an answer to your question, however, my understanding while I had lupron injections monthly, you should have them no earlier or later than 3 days from when you had the most recent injection.
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Sorry for delay in reply.
Newbie, estrogen levels always read very high on tamoxifen in pre-menopausal women so there is not much point in measuring them in that context. The levels go up because the estrogen receptor is selectively blocked in breast an some other tissues. The estrogen receptor is not blocked in the uterus so that's why there is a risk of uterine lining thickening because the endometrium is constantly stimulated. Lupron or zoladex are an option but, as the evidence for benefit is not established, some MOs don't like to use it in premenopausal early stage BC because of the menopausal issues it causes.
Joy the timing of lupron/zoladex does not have to be 'on the day' within 2 or 3 days of due date for injection is fine. For 3 monthly depot the window is wider.
Annicemd
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I have been a bit preoccupied creating my website. It's a well-being website, not specifically related to hormones or BC but should be helpful for anyone with fatigue. If you google 'fatiguewise' you should find it in case you are interested. It's a working progress, not yet properly google optimised and my blog is not sorted out yet! If the moderators delete this feel free to Pm me for the website address. I want to help people with fatigue symptoms. This is not well addressed in modern medicine whether it's related to BC, hormone issues or other medical illness.
Annice
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hi everyone
Am I correct in reading that zoladex puts women permanently into menopause?! I was of the impression that once I stop it next year I'll get my periods back?! Aaahhhh
Also, this is a tricky one but maybe Annice or some other super intelligent being can help me.. I am thinking of trying isagenix 30 day cleanse, it looks really good and healthy but I don't know how it might interact with tamoxifen / zdex... Am so fat now that buying a new wardrobe or hitting the diet hard are my only two options. I'm working out three times a week in spin and step classes, and I'm eating well.
Xx holly
The ingredients etc can be found here if anyone cares to take a look http://nutritionalcleansingsystem.isagenix.com/?s...
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kiwi...my understanding regarding ovarian suppression is that once you stop treatment, your periods might return.
In my case, I was nearing the age of natural menopause, so two years of ovarian suppression, pulled the switch on my menses. Once a year followed completion of ovarian suppression without menses, I was deemed officially post menopausal. Everyone is different. Furthermore, until the SOFT results are in, no one knows whether ovarian suppression helps, nor do they know for how long to continue o\s. Nor do they know if certain ages benefit more or less from it.
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kiwikid - my periods returned after I stopped Zoladex - 5 months later. I thought almost a yr of the shots would propel me into meno since I turned 45 but no such luck
I reluctantly had the shot on fri again since the jury is still out
VR I guess that's my big question - it could be years until I get into natural meno, I cant see me on these shots until then -
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Have question
Lefty has been hurting for the last week on the left outer side and under armpit. I did radiation and lumpectomy, but it's hard to ignore. I thought that I was done 2 years ago and all of a sudden this. Plus, it feels hard. Thing is, I am way across the country on an assignment for 6 months and am not due to go home for 12 weeks. When I accepted this job I told them I had no health problems. (didn't think I did) This is a very small community and if I tell my boss it will be all over town. Silly me. I think my boss will be mad, well not mad, but I would like them to hire me back on a temporary assignment like this in the future without them feeling like they can't count on me.
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you guys are so knowledgeable...if your ovaries are removed/shut down where else estrogen produced if you are pre-meno?
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Hi Holly, zoladex is not a permanent menopause treatment but in women very near natural menopause it can induce this. In younger women menstrual cycles can return like they can after chemo.
The isagenix has not been clinically tested so no one will be able to reasure you about its efficacy or safety,
Annice
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rosem estrogen is produced by other cells in the body such as fat cells which remains a source of estrogen once the ovaries are removed or no longer functioning. Peripherally produced estrogen is the target for aromatase inhibitors that are used for post menopausal breast cancer.
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Hi All. I've been MIA for a while on this site...still dealing w/ PMPS stuff (neuropathy on L side...sigh).
My question: I don't take Tamoxifen, etc. BUT, I'm 48 and am in peri-menopause. I've been having terrible HOT FLASHES a gajillion times a day, which began about 3 weeks ago (my mom still has them at 76!) I'm wondering if I can take something that has helped a friend of mine (she doesn't have BC). It's a compound cream, yam-based progesterone & Bi-estrogen cream. I'm guessing it's a no-no due to the estrogen part?
I've GOT to do Something! This is crazy! My night sweats are hideous also. I was trying to look around on this site for help, but it's overwhelming!
Any suggestions/comments? Thanks so much!
Violet
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Violet....Frogg Togg chilly scarf! Look it up!!! They are scarfs that you place in water and put around your neck. They don't drip and they keep you cool and comfortable for hours. IT. REALLY. WORKS! Other brands make similar products. Frogg Togg is the best. I bought them for EVERYONE I love! They're payin' it forward and buying them for people they love. BOUGHT MINE AT Walmart.
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also...a ceiling fan!
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Vor,
The thing is...Ahem, normally, I'm ALWAYS--ALWAYS! freezing cold!
Vi
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I would not recommend that you use any form or estrogen or progesterone creams.flashes and sweats are v difficult.
There is a huge variation in menopausal sweats and flashes and some women are crippled by symptoms and others hardly suffer at all. Estrogen certainly relieves the symptoms best but that is really a no no for any ladies on this site 😒
The first thing that I recommend for my patients and what I do myself is try to optimise every possible modifiable aspect of lifestyle. Some of these are easier than others. I know if I am stressed of I have eaten any processed food or had a skin full of alcohol,for example, my sweats are much worse!
If you don't think there is anything you can change in terms of lifestyle then the pharmacological route is next. Paroxetine and venlafaxane are types of antidepressant medication which have been found to reduce menopausal hot flushes and sweats by up to 70%. They can affect tamoxifen metabolism but if you are not taking that then they would be fine. Of course all drugs can have side effects so they don't suit everyone.
I have put a link below to an article I have written on menopause management which focusses on lifestyle which is my preferred approach.
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Hi- My MO put me on Effexor for hot flashes and I am on Tamoxifen. He told me that Effexor would not interfere with Tamoxifen. Effexor is also for depression but I am on the lowest dosage and it works quite well for me.
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Love your web site Annice ...very very helpful !!!!!
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As much as possible I prefer to address any problems with lifestyle too, although that is affected unfortunately by the drastic treatments many of us have endured.
Aging with the additive effects of treatment has resulted in both staying NED as well as extremely low hormonal levels, so as a longer-term cancer survivor here than most who post, I am now dealing with severe drying of the skin (and perhaps internal dehydration of tissues, as well). Thus far, internists and 2 different derm docs have helped with the use of steroids (not a lifestyle change) and now antihistamines (not a lifestyle change).
I would prefer some moderation of the severely low hormonal levels that has been caused in part by the original treatments that were so damaging and unnatural, as a treatment for the constant itching that would be more in tune with lifestyle changes.
A more scientific approach would be to separate out whether or not the addition of progestins to estrogen treatment, as well as estrogen given to women at younger ages (40's and 50's), created conflicting information about whether low-dose estrogen supplementation for the elderly is actually beneficial, or not, rather than adopting the blanket "no-no" for everyone.
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Lifestyle modification is not a substitute for treatment for cancer or other complex medical illness. Lifestyle modification, when used as part of a comprehensive approach to health is nonetheless fundamental to creating energy and well being infrastructure, which is often destabilised by many medical illnesses.
We all want a quick fix to provide us with well-being nirvana but the reality is that there is no quick fix and optimisation of well-being requires careful attention to many factors- medical, hormonal, nutritional, lifestyle and more. Addressing one aspect is like closing one of twenty windows in a house and expecting the the house to get warm even though the other nineteen windows are open.
AA you are not going to be granted your study of estrogen treatment for early stage breast cancer in the near future for reasons I have explained on these pages previously. There is absolutely no reason why you can't approach an endocrinologist to give you a trial of supervised estrogen therapy if you feel this is going to miraculously transform your life. I have colleagues who treat patients in this way, off licence of course. If this works for you that's fine. Medical treatment is about quality of life as well as quantity. Some doctors would have an issue with this particular approach because our mantra is to " first do no harm". Equally there will be few women on this site who would want to risk treatment with estrogen just in case it turns out to be the miracle cure for everything.
My website is aimed at those people who want to be empowered to holistically and sustainably optimise their well-being in a safe and effective way without exposing themselves to potentially harmful treatments. It also provides a framework to support quality of life infrastructure as part of treatment armamentarium for complex medical illness.
www.fatiguewise.com
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It is true that endocrinologists are primarily serving the many who come to their door for things like diabetes or thyroid issues treated in isolation from whatever else is going on in the endocrine system in terms of cancer. A more genuinely comprehensive holistic approach would be better, but there are too few endocrinologists and too many patients.
In the meantime, we will take what is left of us to manage, and limit our horizon to lifestyle modification because endocrinology isn't ready yet (after decades of patients going through cancer treatment) to explore other options. For example, I am doing what has been the standard of practice for skin care for the elderly for decades, and hasn't changed because we stay focused on life-style modification. I limit exposure to too much sun or wind, and take fewer baths and showers, in tepid water, and pat dry. That helped the skin not to get any worse, but it sure didn't get any better.
Lifestyle modification is an important part of our efforts, and should be encouraged because it does make some difference. But unless we are always pushing forward to let professional caregivers see what has yet to be done in a truly holistic way, we sit where we have been for decades, and stay there.
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As a clinician the easiest aspect of my work is identifying and treating medical and endocrine disease pathology or imbalance. However many people continue to experience adverse symptoms and ill health even when blood tests are normal or hormone levels are optimised.
Over the years I have recognised that modern medicine lacks focus on addressing non-pharmaceutical and non-surgical treatment approaches. The pharmaceutical industry have led medical research for decades now often with conflicts of interest. There may be many non pharmaceutical treatments that we don't yet know about that could improve peoples lives focussing on prevention as well as cure. We have only recently been recognising this with such simple issues as treating vitamin D deficiency and recognising the detrimental role of processed food and refined sugar on cancer, cardiovascular and diabetes risk.
We certainly need innovative research to take the management of many diseases forward. But we also need to address comprehensively all the issues, lifestyle or otherwise, that we already know can make a huge difference to health integrity. These are increasingly ignored or not optimised in modern healthcare. For cancer survivors the impact of optimising lifestyle, nutrition, stress etc cannot be underestimated in terms of patient outcomes.
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Thanks for the responses, Ladies. I am ready to try just about ANYTHING, as my hot flashes & night sweats are SEVERE & out-of-control. The night sweats are unbearable & so continuous, it's very difficult to get any sleep. I might try Effexor...but at this point I'm so desperate, I wish I could just go back on my low-does birth control pills! I NEVER realized that this crap could be debilitating...:(
Violet
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Try the Effexor, even if only for a couple of weeks, to see if it helps enough to relieve the misery. It didn't work for me but it could work for you. Perhaps AnniceMD will reply to the genuine desperation in your post about hot flashes.
The focus of care is so intense on "treating the cancer" that there just isn't enough effort being made to address survivorship issues and aftercare by the ONLY specialty practice that is qualified to deal with them. Other doctors just sit back and won't deal with endocrine issues for breast cancer survivors beyond prescribing occasionally helpful treatments such as Effexor. By that I mean, even if scientific practice were to indicate that for some of us the benefit and CHOICE to have low-dose hormonal support is reasonably safe, there is no one making the effort to find out in our behalf.
When I am up at night every two hours dealing with what the derm doc's NP called "severely dry skin", applying more of the expensive and gummy-feeling "goopy" creams to help me get another mere 2 hours of sleep before awakening and putting another coat of it on, I will be thinking of you and hoping you are getting more rest than I am. At such times I honestly do wish the specialists in this field -- the endocrinologists who are not getting us clearer answers about our hormonal levels in relation to minimum endocrine support -- would be there suffering too.
I have to wonder whether the periods of extreme hot flashes initially are, in effect, wearing out our sweat gland response, which then leads to the severely dry skin later on that I now suffer from on a permanent basis. The derm docs use steroids initially to calm down the rash over my body and then resort to use of anthistamines on a permanent basis along with various moisturizing creams, many of which are irritatingly gummy.
Drexel Univeristy published an article about the extremely dry skin/eczema showing that when the sweat glands stop producing much sweat, then a certain variety of bacteria take over and produce a bacterial slime that then coats the skin and causes the itching and eczema that I am having.
Those who complete treatment in their 40's and are happy to keep the cancer beast at bay for a few more years have little idea how miserably difficult it can be, longer-term, and are able to be more nonchalant about it. For a while.
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What I'm saying is, drugs like Effexor and adding lifestyle modifications is all that is out there until they do the research on mice "someday" and then on humans "someday", to answer questions like mine (about whether or not there actually might be safe levels of minimum hormonal support for breast cancer survivors instead of permanent antihistamine medications and creams).
I thought it was revealing that the Drexel study identified the cause of my problem of eczema -- and then concluded that because they felt that present endless treatments used are working well enough for the problem, that would continue to be "the answer" for eczema. Terrific conclusion -- if one can handle the all-night struggle and the daytime weariness.
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As I write this, I'm lying on a towel in my bed. Had to put the towel down after waking up with soaked sheets.
The comments about antihistamines have me thinking. My hot flashes were sort of under control as long as I wore pajamas to absorb the sweat and cornstarch powder. Then I had some severe itching skin issues recently. Each day I used Benadryl or Zyrtec the hot flashes were terrible. On days I didn't take antihistamines I didn't have the sweats.
I sympathize so much with anyone who has to deal with this. There's no cure-all for it, just as their isn't one treatment that helps us all.
I miss cuddling with my husband without waking up in a puddle of water.
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Hi Tarheel,
It is a real blind spot in the stampede to address the possibility of recurrence or worsening cancer, and those who have the tiniest risk for that are the blindest of all in making their decisions about treatment and their future existence. Medical providers have such limited personal experience with cancer to be able to have a true concept of risk vs benefit for early stage cancer that it is very difficult for patients to develop a rational perspective before they find themselves enrolled in major cancer treatment -- some of them at their own insistance over the cautionary advice of a too-small group of practitioners who are less inclined to recommend heavy-duty treatments.
And that means there are generations who are making such extensive changes in their endocrine system, with no idea what the results are turning out to be for those of us who have been there and done that, or how little help is available out there to deal with it night after night after night. And that doesn't even take into account the patients who have more advanced cancer and are having it treated with heavy-duty treatments.
The total impact on costs and productivity is immense, not to mention the suffering involved.
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AlaskaAngel, I'm right behind you. You say it more eloquently than me. When I try, it sounds like I'm anti-chemo or anti-doctor. And I'm not.
Women with breast cancer are suffering, really suffering, because of the treatment, not just the disease.
Women who willingly and fearfully take drastic steps to over-treat early stage BC are not just wasting money, they could be compromising their body's ability to prevent a recurrence.
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Thanks, Michelle.I understand the mixed feelings people have about being open about the after-effects of difficult treatments, but as an adult I personally would have appreciated having the information to consider before choosing treatment, as part of the decision-making process.
We need a wider and more supportive viewpoint in addition to and as alternatives to western medicine for these problems that are brought on by western medicine.
Where is the evidence of wider awareness and compassion, especially when one considers what it is like to deal with both the misery of these problems due to treatment, and mets?
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