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 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.

Angry lady 

is there anywhere I could find recent information on study’s about tamoxifen would love to read actual study’s . 
thsnk you love Lara xxx 

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.

Hi Lara. I am trying to find out where the original studies are, whether they are accessible for free online (not behind a paywall) and whether they are suitable for a 'layperson' to read / whether they are full of medical jargon.

I will report back if I have any success.

A couple of articles I have found interesting are:

A previous study where people with a family history of breast cancer did not consider taking Tamoxifen for preventative purposes as they did not consider the side effects to be acceptable:

www.independent.co.uk/.../women-breast-cancer-drugs-nhs-side-effects-tamoxifen-prevention-pill-a8318461.html

And a study about why hormone blockers don't work for everyone (I don't recall any of the doctors mentioning this):

www.independent.co.uk/.../women-breast-cancer-drugs-nhs-side-effects-tamoxifen-prevention-pill-a8318461.html

I would also like to find out more about the studies which have shown Tamoxifen increases the risk of endometrial cancer.

As I say I will report back when / if I find out more. I just think all the information and studies need to be more readily accessible.

And with the correct link for the second article:

https://www.imperial.ac.uk/news/177133/breast-cancer-drugs-stop-working-when/

A study about why hormone blockers don't work for everyone (I don't recall any of the doctors mentioning this).

Hi ProfBaw Thank you very much for sharing your experiences. There are always limits to any of us communicating our experiences as each type of breast cancer is very different and specific so thank you for sharing.

Angry lady 

thank you so much for sending these across much appreciated keep in touch xx love Lara xx 

Hello angry lady . I see your point entirely and of course it’s your right to refuse treatment if you wish , however I would like to put my side across . I had Bc 18 years ago , grade one , no lymph node involvement so had a lumpectomy & radio . At the time it wasn’t deemed necessary for me to go on Tamoxifen as it was only a grade one . I was so relieved at the time as I didn’t want the side effects , weight gain etc . Fast forward 18 years and then had a local recurrence , resulting in mastectomy and DIEP . Current practice would be to have offered me Tamoxifen first time round ….. maybe it would have prevented recurrence ?? Who knows for sure? So as much as I hate taking Letrozole , I will carry on taking it . I wish you all the best . 

Hello angry lady . I see your point entirely and of course it’s your right to refuse treatment if you wish , however I would like to put my side across . I had Bc 18 years ago , grade one , no lymph node involvement so had a lumpectomy & radio . At the time it wasn’t deemed necessary for me to go on Tamoxifen as it was only a grade one . I was so relieved at the time as I didn’t want the side effects , weight gain etc . Fast forward 18 years and then had a local recurrence , resulting in mastectomy and DIEP . Current practice would be to have offered me Tamoxifen first time round ….. maybe it would have prevented recurrence ?? Who knows for sure? So as much as I hate taking Letrozole , I will carry on taking it . I wish you all the best .