Has anyone refused tamoxifen and also what’s the statistics if you do refuse? Like for some, chemo only gives an extra 2% for example on survival and reoccurrence and they refuse but I haven’t been told anything about tamoxifen ?
I was 8/8 ER+ so am only too happy to take Tamoxifen, wouldn’t be able to live with the knowledge I wasn’t doing all I could to prevent reacurrance, it’s fine and I have no major issues with it, have never asked about the percentage protection , was told I must take it so I do! Xx Jo
Hi
I’ve just had DCIS diagnosis, rt mx and DIEP and have just been asked to take it but haven’t been given my pathology results just suggested to take it for 5 years as a adjunctive… At the moment I am in the not going to take it mind frame until they give me more information that shows me that it will be of benefit in my particular situation. I also had my sentinel nodes all clear prior to mx and reconstruction. Keep us posted with what you choose to do, and I’ll likewise. X
Also mx pathology showed no invasion or micro invasions from the DCIS.
The “what if’s” are varied, unknown, and individualized. As many have said, you have to make the decision that is right for you. I expressed serious concern about Tamoxifen as it was prescribed by my oncologist but agreed to try it and see if I experienced side effects. I was also prescribed Gabapentin to help with sleep and the interruption of hot flashes. After three months, I had to stop both drugs.The side effects were unbearable, and my body and brain were suffering terribly: urinary incontinence, vaginal dryness, impotence, spotting, suicidal thoughts every day, hot flashes (of course), difficulty sleeping, difficulty retrieving words and remembering ideas, blurred vision in the morning, slow reflexes in the morning (so unable to drive – Gabapentin), repeated eye infections, bladder infection, joint pain.
Have been carefully tapering off Gabapentin in small increments (down to the last 100 mg over the next two weeks) but stopped Tamoxifen four weeks ago, altogether. Many syptoms have abated, although tapering from Gabapentin also brings its own challenges. I had an oncoptype score of “0,” had a unilateral mastectomy for stage 1, grade 2, three tumors, no lymph node involvement, no reconstruction. At 60 years old, I am comfortable with taking no additional drugs and will evaluate the next set of decisions if they become necessary in the future. In my case, my body gave me an ultimatum and I listened. A physician offered surgery to remove ovaries and uterus and I declined.
I have had people threaten with statistics and studies, and I have read insistent paragraphs from people who are 100% certain that the decision to not take Tamoxifen is a death sentence. On the one hand, I don’t believe that to be true. I am intrigued by attitudes toward Tamoxifen in various countries around the world, by the connection between research funding and drug company sponsorship, by studies that stop suddenly before they have run their course, and by the types of prevention that people choose to study. On the other hand, I know myself well enough to know that I will not second guess this choice. Do what is right for you and surround yourself with people who support your decision, your choice, and your unique knowledge of what is right for you.
Hi Cara, probably best to ask your onc or bcn on the stats as it will vary depending on your er status. If you feel able to, entering your diagnosis into ‘nhs predict,’ might give an idea on this. In my case I get the benefit over 10 rather than 5 years.
As I’m er+ 6/8, I’m happy to take tamox. & fortunately, I’m one of the many who has been fine on it so far.
As Charys says, obviously it’s up to you, but if it is recommended, you will only find out if it’s ok by taking it. Inevitably, those having problems will tend to post in forums, which can be anxiety provoking if it is to be part of your treatment plan.
ann x
Thanks for the replies everyone. I have 5 days to go til my last chemo, hallelujah! Then I’m having a bilateral mastectomy, I should be meeting with my oncologist to discuss tamoxifen before this and I’ll ask then how er positive my cancer was. I still don’t want to take it ? x
OMG Charys that sounds awful!! I was absolutely fine on Tamox for 3-4 months then suddenly noticed my parting was getting wider & wider. I have found the hair loss element of chemo REALLY hard, so completely panicked & stopped taking it. Onc said take half for 4-6 weeks & then go back up. I have never managed to get the dose back up, as my hair follicles seem to be almost immediately affected at 20mg. I am not a vain person, but would have no quality of life if I went bald … I wouldn’t be me any more. The onc has really been trying to persuade me to get back to 20mg at least every other day, because that’s the dose most of the research has used. That said, all research uses drug company funding & I read there has never been a study to identify the MINIMUM effective dose. Drug Comps are not interested in finding out, but if they had to take it themselves, I bet they would test it. I have read I3C is more potent than Tamox on breast receptors anyway, but you would need to eat an awful lot of broccoli to get enough. I read broccoli seed sprouts have 20x as much I3C in as broccoli, so I am supplementing my 10mg with loads of those in my smoothies & eating cauliflower, broccoli, kale & watercress as often as poss. I am going to try to increase again towards the end of the year when my Herceptin stops, as that can cause hair thinning too, but if it doesn’t work for me, there is quite a lot of research showing low dose tamoxifen is just as effective, if you google it, so don’t let the fact you are unable to take the full dose play on your mind. Big hugs xx
Poor you! Forgot the IBS issue, maybe eating a load of broccoli etc might not be the right route for you. It doesn’t seem to give me any issues (by that I mean farting LOL?). The broccoli seed sprouts are the easiest on the intestinal system, so maybe try those. I get mine from the health food shop ready sprouted, but you can sprout your own on a window sill in a couple of days. I3C is Indole-3-carbinol & a lot of research is being done into it, which shows it can be more effective than tamoxifen in blocking breast receptor sites (90% v 60%) & can convert the bad bit of oestrogen (oestradiol) to a safer version & neutralise harmful by-products. The issue is how much cruciate veg you would have to eat to get the full effect, so they are currently trying to distil the active elements, I3C & something called DIM, into a pill. If you PM me your e-mail I’ll send you the info.
i’m not saying anyone who is getting on with Tamox OK should stop, but it could just help peace of mind for those that can’t take the full dose.
There are also a lot of what they call ‘scholarly articles’ on the net about low dose tamoxifen being as effective. They gave various doses to preop ladies then analysed their tumours after their ops to see how effective 1mg, 5mg & 10mg was. Definitely shows reduction in the relevant markers, so some is better than none, even if you can only manage 1mg (good luck trying to chop the Tamox that small). My onc did admit they do prescribe 10mg to some people who have bad SEs, but still keen for me to go back up. BBxx
Hi there,
I’m new on here so please bear with me. It’s so interesting reading these posts but also scary! I had a bilateral mastectomy in early September this year but don’t have to have any further treatment apart form 20mg tamoxifen for 10 years. I do count my blessings for that, but like so many of you say, I’m worried about the Tam side effects and I’m seriously considering not taking it. I’ve only just been put on it this week. My oncotype result stated that with Tam I’d have a 10% chance of a distant recurrence over 10 years, or a 20% chance without it.
Can you please explain what 13C is to do with brocolli and green veg? I believe in eating as much green veg as possible in Nutribullets and am wondering if this has been my saviour regarding having been lymph node negative. I had stage 2 tumours in both breasts with a particularly big one on right.
I’m so sorry to read that some of you are having such a bad experience of Tam. My oncologist told me to give it a try, but then it would be reviewd later to see how well I’m tolerating it. because there are alternatives?
Thanks for all the posts. It’s so interesting and supportive having a forum like this.
Susie xxx
hi susie
The list of side effects can look alarming, but it does not mean you will get them, or if you do that it is not manageable. Many women tolerate tamox well with little or no side effects & inevitably, you only know by trying it. if problems with side effects arise, then you will deal with it.
take care, ann x
Hi Susie, I would go with your oncologists advice and give them a go, I’ve been taking them for 18 months and have no problems at all, extreme side effects are rare and the majority are just fine on them , I’m not a huge believer in what we eat or drink having anything to do with us getting cancer but I do try to be as healthy as possible!! Xx Jo
Well last night I finally decided to start my tamoxifen and so far today I feel fine. Here’s to the next 10 years!