Hello angry lady 

 have been on tamoxifen for 1 year had it’s ups and downs but in general ok , I agree you should not be bullied in to taking these it has to be your choice .

I feel that I’m taking them helps me think I’m doing something I have no idea if it’s going to work as it’s no guarantee.

it’s good you posted here as lots of ladies could be thinking the same 

I wish you all the very best lovely xxx 

Hello Angrylady,

A very warm welcome to our forum.

I am so sorry to hear that you have had a second cancer and that this time it has spread to 6 lymph nodes. I agree that it is horrible to be bullied into submission to have a particular treatment. I have had 2 bouts of stage 1, breast cancer in the same breast, within a year of one another. Fortunately, there was no lymph node involvement either time. I too had a bad experience and refused to have radiotherapy, because I had discovered a lump in my other breast, which my surgeon refused to investigate. My argument was that there was no point in treating one breast, whilst ignoring the other.

By the time I got a second opinion and got my other breast investigated, it was 11 months after my first surgery. I went and spoke to two eminent researchers in radiotherapy. One was of the opinion that I might as well have it, whereas the other was dead set against this. He told me that if I hadn't had radiotherapy within 3 months of surgery, it was pointless.

Whilst I can sympathise with doctors, who are trying to do their best for so many over wrought individuals, by saving their lives, there is a lot that some doctors have to learn about public relations. I won't go into my experience here, but suffice it to say that my treatment at that first hospital was abominable. I eventually moved to another surgeon, in a different hospital and you've no idea the difference this made. We really do need to have faith in our care team for our treatments to be effective. I know that there are a lot of rumours and some truths about all cancer treatments. Many of these are historical, although some do still exist. Care teams need to be able to convince their patients to trust in their expertise in such matters or to discuss the advantages and disadvantages of various treatments before reaching a mutual consensus on the best way forward. 

I do wonder if, my new cancer was due to not having radiotherapy, although I was also told that Tamoxifen hadn't worked for me. When I had a double mastectomy the following year, I changed to Letrozole for 6½ years. I had a number of side-effects from this, but I am still here 14 years on and would do the same again if I had to.

I am sure that you too, must wonder whether you would have had a recurrence, if you had taken Tamoxifen? The sad thing is that we shall never know for sure, one way or the other. Sadly, there are no guarantees with any cancer treatment, despite ongoing research. I lost my mum to secondary breast cancer and can testify to the fact that diagnosis, treatments and after care, have all advanced dramatically in the past 26 years.

I sincerely hope that you won't have any further recurrences and I wish you all the very best for the return to your career in the New Year.

Kind regards,

Jolamine xx

About the medication, anyone deemed as in sound mind has the right to refuse or accept any treatment they wish to. Even life saving treatment. Can't force anything down someone's throat or on an operating table. Kids, that tends to fall under the carers, but sometimes that can be overruled by the treating doctors through the courts. But an adult, yeah, 100% on them what they do or don't want to do.

As for this comment, "The only proper prevention is a mastectomy". That is not true at all. Everything we were told and all the updated research from reputable sites now say this isn't true. There will always be breast tissue left behind on the chest wall. There's even updated data suggesting lumpectomies have similar outcomes for those who have had cancer. All a mastectomy does is lessen the chances. After all, less tissue, fewer places for the cancer to take hold. Before all this, we too thought mastectomies were the be all and end all, but the truth is, they simply aren't.

Jolamine, I responded to your comment in error. It was intended for the author of this post. Apologies.

Hi Profbaw,

No problem at all.

Regards,

Jolamine 

Hi laraj

Many thanks for your reply. It is great to hear that your experience has been overall positive and thank you for sharing.

I am pleased you found my post to be useful.

Take care xxx

Hi Jolamine

Just to confirm the lymph node spread was only to one out of 6 lymph nodes.

Thank you for sharing your experiences. I did have radiotherapy the first time I had breast cancer and obviously it didn't work as I had a recurrence.

I am sorry to hear that your concerns were not taken seriously. I 100% agree with you that 'there is a lot that some doctors have to learn about public relations', and that 'Care teams need to be able to convince their patients to trust in their expertise in such matters or to discuss the advantages and disadvantages of various treatments before reaching a mutual consensus on the best way forward.' I could not have put it better myself.

The key part for me from the NHS web page www.nhs.uk/.../ is 'your decision must not be due to pressure by healthcare professionals, friends or family.'

You have done so well to change your treatment team and get yourself into a better position. Well done for standing up for yourself. The first time I had breast cancer I had to change both the breast care nurse and the surgeon as they were so awful to deal with.

The side effects of one Tamoxifen tablet were just too excessive for me. My severe eczema is something that I have worked with Dermatology for many years to get under control and I cannot live in misery for years just for something which is not a guarantee. I have a mortgage and bills to pay and I don't want to have to sell my house and live in poverty!!! This is just my position though.

I feel that the surgery I have had is enough as the lymph node removal removes the means of transmission and I have had a mastectomy.

Thank you so much for your post. It is great to hear from you. Thank you again for posting.

Hi ProfBaw. Thank you for your clarification in relation to mastectomies.

Why then is a double mastectomy immediately recommended for people with the BRCA gene positive for prevention purposes if it is not that effective?

Are you aware of any recent research on the hormone blocker tablets which covers:

1) How many people take them and have no side effects.
2) How many people have minor tolerable side effects which don’t affect their quality of life and mental health.
3) How many have serious side effects which ruin their quality of life and mental health
4) How many people have a recurrence of breast cancer while taking the hormone blocker tablets.
5) Were any controls done during previous studies to confirm that the tablets really did make the difference as opposed to the person going into menopause naturally.
6) Were hormone levels monitored regularly during previous studies to confirm that the tablets were making a difference.

In this day and age , an educated person I would expect better levels of information and statistics to be readily available from a recent study, and for research to be carried out every 3 to 5 years on this.

I really feel that better treatments for breast cancer urgently need to be looked at. I did see the treatments delightfully referred to as ‘cut, poison, burn’ (surgery, chemo / tablets), radiotherapy) in one article.

Hiya, i have no idea about the hormone treatments, so I can't comment on that.

My comment regarding mastectomies was me parroting what we were told by the oncologist, and the breast surgeon. We also did a lot of our own research because my wife was initially down for a mastectomy as she had quite extensive spread. However, because she had a full response to the chemo (no detectible cancer was found on scans or during the op), this was downgraded to a lumpcectompy. Because of how locally extensive the cancer was prior, and always being told it would be a macectomy, we were worried her treatment plan had suddenly changed. That it wasn't going to fully do the job. But it was explained in detail that macectomies and lumpcectomies for most women have the same outcomes.

To be clear, my wife did not have the BRCA gene, so that is something that obviously needs a different approach. I just didn't want any women coming on here, who went through what we went through, reading their lumpcectomy wasn't as future proof as getting the entire breast taken off (or both), then worrying themselves silly that they had recieved some sort of half hearted treatment. But yeah, in your case I can't dispute that was the best thing for you and maybe others with that gene.