TAMOXIFEN

englishrose2905

i was diagnosed with bc in june 2014.. had snb taking 3 nodes all clear.. i had a mastectomy due to the cancer which was grade1 stage1 but also a benign tumor sat next to the cancer. i opted for mastectomy so all margind would be complete .. i was then put on tamoxifen for 5 years as premenapausal but side effects are very much worrying me and the risk of other cancers is greatly worrying me,

there has to b more than me worrying about these tablets so wanted to put a post up to see if any ladies were trying an alternative to tamoxifen that isnt going to give me other cancers to worry about..i have been taking the tamoxifen 20mg dose for 2 weeks now and have to say ime not happy about spending 5 years on them.. surely there must be some natural remedies or alternative to these tablets..

can anyone offer up some advice please

tracy

Momine

I think you should discuss this with your doc. With such a small, low-grade, node-negative cancer, your risk of recurrence must be quite low to begin with. Have  the doctor spell out exactly how high your risk is and exactly how much risk reduction you gain from the tamox. Then explain your concerns and have the doc help you make a reasonable decision. 

How is your weight? Do you exercise?

Anonymous

Englishrose/Tracy:

We have a very similar diagnosis, and I also had a difficult time with Tamoxifen. 9.5 years ago, at age 46, I was dx with 1.8 cm stage 1, grade 2, ER+, PR+ tumor.  I had a mastectomy and they found another cancerous tumor next to it.  I was 46.  I was told to have 4 rounds of ACT chemo, but I quit after one dose because I'd begun to do my own research and had the same concerns you have about Tamoxifen.  I was sent to another oncologist, who I liked much better.  She said the anti-hormonal meds were more important (in my own story) than the chemo anyway. I had an excellent prognosis either way.  I recall hearing up to 95% chance of having no reoccurrence even without all these toxic meds. 

For some reason, I did stay on the Tamoxifen--though it was tough. Everyone has different reactions.  My onc called it "not a very friendly" medicine.  She'd have had harsher words if she'd been on it!  I do find I "settled into it" a bit after a few months. But I fought side effects the entire time I was on it.  For me, bone pain and hot flashes for years were the most annoying, but there were others. Taking a holiday from treatment for a few weeks/month did not help (when I finally went off treatment completely it took about 6 months for all the effects to stop).

When blood tests showed I'd actually gone through menopause sometime during this treatment (I didn't know because only one chemo treatment stopped my period and it never started up again, though I initially wasn't menopausal)--my doc switched me to Aromasin.  I was so excited to have another medicine instead of Tamoxifen.  The Aromasin had its own side effects, some different and some similar to Tamoxifen. But it was never QUITE as hard as Tamoxifen.  I will say that I did stop treatment probably 4 months before my 5 years were up. I have no prescription coverage and had to pay $400 out of pocket per month for this medicine and I just couldn't do it anymore. 

So - good luck to you in your decision.  Pay attention to your hormone receptors--you must be "positive," which is why you'd be on this medicine.  And we're lucky to be in that group because the treatments are why it has better prognoses than hormone receptor negative tumors. 

inga6060

Ok, so I will be the only one to actually answer your question.  Yes,, there are alternatives.  You will see entire topics on a product called DIM.  There is also one called brevail.  Love this one.  All it is, flax.  Personal experience.  Years ago, when I drank coffee, it would make my breasts hurt.  I would take one brevail.  Gone no breast pain.  wish I would have stayed on it, probably wouldn't be in this mess.  Also,  if you look up natural aromatase inhibitors, like wow, bunch.  Grapeseed extract, resveratrol, pomegranite, etc.  I personally take genistein, because it showed up on blood work, that it killed the cancer in me.  I can't tell you what to do.  but you have options.  Best wishes.  Follow your own path.

englishrose2905

My weight is 8 St 7 lb. .and ime 5 ft 4 inch in height.. The numbers on my letter when leaving surgery are er 100...pr 96...ki67 4%....her2+..... which mean absolutely nothing to me and we're not explained..right breast invasive ductal carcinoma grade 1 8.5mm. ...0/3 sentinel lymph nodes....ime quite active as have a 5 and 13 years old so I see that ad regular excersise.. I gave up smoking in may 2014...and use ecig...tamoxifen has been prescribed for 2_3 years as aparently I am pre-menopausal.. which I didn't know that either til my local surgery offered me my surgeons letter lol.. Not wanting to spend any u necessary time on tamoxifen as they can lead to further problems.. so looking for alternative but not wanting to put myself in any risk of further cancers.. can anyone make sence of that please or advise me .. thanku in advance xx

Momine

Englishrose,

Your weight is great. I am sure you run around a lot, but try to take a 20-minute walk every day, just for you.

I really think you need to insist that the doctor explain things to you. The doctor should tell you what the recurrence risk is with and without the tamoxifen. The doctor should also explain what each of the items on the report mean. I can tell you that the low Ki-67 number is considered a positive though.

macb04

I quit tamoxifen about a month ago. I took it for about a year. From the first pill I felt really conflicted about taking it. I had lobular and there is very little research about tamoxifen/lobular,  but the two studies applicable to tamoxifen and lobular said that "for a certain subset of lobular bc patients" tamoxifen can greatly increase the risk of a more aggressive new cancer.  Too too scary. Also it was wreaking what little peace of mind I would occasionally have with the wildly miserable mood swings, rages and terrors that were getting worse.  I am feeling better able to cope lately.  Not great, still cry sometimes,  just not as bad.

Take whole bunch of stuff, flax ground fresh daily 1tbsp, melatonin,  vit d3, b complex, DIM/Indole3c, get IV vit c. Will be trying more and more ketogenic diet. Am doing intermittent fasting diet daily.Astragulus too. Exercise daily as well.

motheroffoursons

Inga, you wrote, "I personally take genistein, because it showed up on blood work, that it killed the cancer in me."   Can you tell me what this blood work was that showed the cancer was killed?