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I flashed my boobs to three women I barely know today. Actually, it was less of a flash and more of mid-term exposure. Sometimes I wonder if I have no dignity left or if an automatic behaviour kicks in; be matter of fact and ‘get on with it’. The women (a care assistant, chemo nurse and clinical trial doctor) were all female, super nice and respectful. That helped. It’s funny, I notice I slip into, ‘put them at their ease mode’ even though it’s my boobs that are on display, being covered in sticky pads and wired up for an ECG. I suppose it’s a way of making myself feel better. Happy medical team, more willingness to look after me, happy patient, me.
Hmmm…as happy as you can be after another day of hospital appointments: early morning blood test, five hours on the chemo ward, loads of waiting for drugs that should have been ready, sky high blood pressure, racing heart (hence ECG), and chemo. To top it off, boobs were touched up, not once, but three times, while there was a struggle to get the ECG set up and working properly. The ECG that usually takes 5 minutes, took over 30 minutes and then, of course, I had to wait for it to be ‘signed off’ and for my blood pressure to come down, before I could escape. Happy me.
Anyway…my boobs are back under wraps so this blog is again going to focus on Menopause. Men, the decisions women must make about whether to put up with symptoms, how to find and interpret information about how to manage symptoms and decide what symptom management solution to choose, can be a full-blown, time consuming project. It’s rarely straight forward. They may need your help and similarly, you may need theirs, if Andropause (Andro) impacts you. Both Meno and Andro are especially tough, if you are living with cancer or the possibility of cancer recurrence (see Menopause Part 1).
This is my menopause discovery and decision story with hope that it shares useful sources of information and pearls of wisdom. I am no menopause expert. I have done a lot of leg work which I hope saves you and your significant others, time, and leads to your discovery of rapid, helpful, tailored solutions that work for you and the women in your life. My discovery includes growing ‘Meno’ communities offering understanding, support and a safe place to talk – hurrah! Men, women, please do use this and my previous blog on Menopause, pass them on to your male and female friends and partners. Ask any questions you have.
Women, please seek help, don’t put up with symptoms unless it is your conscious, measured choice to do so. Don’t lose your life to Meno – yes – sadly – it appears, one woman may have experienced severe distress related to Meno, treatment, depression and difficulties with treatment1 (Caution – it is a Daily Mail report, though her diaries appear to have provided an insight into the woman’s pain and distress).
Remember, Meno symptoms are often super challenging. They includie mood swings, hot flushes, night sweats, brain fog, short term memory loss, difficulty in finding words and stringing sentences together, fatigue, bone loss, low libido and vaginal dryness. Others I didn’t mention that are also frustrating and challenge identity for many women, are the replacement of our luscious hair with a greying, coarser version (if chemo or living with alopecia hasn’t stripped us of hair already) and the addition of tummy fat (due to a loss of estrogen, see article).
By the way, I should have said in the last post (and for those that don’t know) estrogen (also spelt oestrogen) refers to any of a group of steroid hormones which promote the development and maintenance of female characteristics of the body.2
The arrival of tummy fat for women who have always exercised or been lucky enough to have slim tummies can be super distressing (though I don’t know one woman, whatever shape, loved or loathed, that welcomes tummy fat!!). Add to that, Meno hormone changes can increase sweet cravings – oh joy, another challenge, especially when trying to keep sugar on the down low to prevent cancer. There is good news; menopause symptom management solutions appear to positively impact tummy fat! At the very least solutions make it easier to exercise without feeling we will set the whole place on fire or internally combust. Still, for some, supplements or hormone therapy won’t be the right path and an estrogen-loss based belly, may prove difficult to budge.
The Universe aligned to bring me different sources of Menopause information right when I needed them. I know this has not been the case for many women; they have found it hard to find any information beyond their GP’s knowledge and the common offer of Hormone Replacement therapy (HRT). Often, HRT, has only been offered if the women have been listened to, heard and had their symptoms taken seriously.
I started out on this MMmM project (my new term for Multiple Myeloma and managing Menopause symptoms) by asking my medical team. Like nutrition, gynaecology is not their world. They are haemo-oncologists and don’t, and can’t, know about everything. This is despite my expectation, wish, hope, that they would be fonts of all knowledge about any factor that might impact my cancer, treatment and living well with both. The oncologists had very little information about Menopause and symptom management. What they did have, was solely about HRT, did not consider alternatives and seemed out of date. They did not have any specific info about Myeloma and Menopause. I suppose on reflection, this should not have been surprising; Myeloma is still rare in women (it is predominantly associated with males of black populations in their 70s).
One was pro use of HRT and the other thought HRT would be a bad idea. It would probably have been more apt to call this standoff, My Meno Brexit; one oncologist is English, the other European, and no agreement has been reached! This difference has ended up being the lasting concern that has made final decisions difficult.
The female oncologist suggested HRT may be a good idea due to its bone protection properties. The male oncologist was concerned that given the procedures such as stem cell transplant and additional chemotherapy I would be likely to need in the future, the addition of HRT could exacerbate the risk of secondary cancers turning up.
With this haemo-oncology, MyMenoBrexit standoff as the second layer in my context to making a menopause decision (the first being, wanting to find out what was a cancer or chemo symptom versus a menopause symptom) I sought more information on the pros and cons of HRT and alternative options (if there were any).
This and the next post are a brief synopsis of the wealth of information I gathered. Although, it may feel a wee bit long in places, I have also tried to make it comprehensive enough to be useful. If a natural, totally non-medical approach is your thing I recommend selecting and listening to the online videos of interviews with experts without medical training or with a holistic approach (link at bottom of the blog). I listened to most of the interviews and was predominantly interested in experts who talked about research, evidence and their years of experience helping women manage menopause successfully. This is what I found out…
There are a lot of misinterpreted research studies, obsolete data and unhelpful myths out in the world about HRT. For many women, especially women who start taking HRT earlier (before 50) and stay on it for a short period (4-5 years) HRT appears to have many more positives than negatives going for it. It has few side effects and is not linked to getting cancer any more than being overweight, a smoker or drinking too much alcohol increases the risk of cancer, well breast cancer anyway.3 Here is a helpful graphic below showing this.
However, it is very important each woman weighs up the risks for herself, talks with her GP, Gynaecologist and medical team (if being supported for cancer or other illness) before starting HRT.
For now, I really like Dr Louise Newson’s summary of HRT and the primary care women’s health forum useful graphic.4 Check out both here – dispelling HRT myths.
If you are interested in the academic, research reports, here is a link to The British Menopause Society & Women’s Health Concern 2016 recommendations on hormone replacement therapy in menopausal women.5 I find this report helpful because it summarises HRT research outcomes, risks and benefits relating to:
The article also discusses pros and cons of different methods of taking HRT, pharmacological alternatives to HRT including Selective Serotonin Reuptake Inhibitors (SSRIs, often referred to in the media as anti-depressants) and doesn’t ignore the evidence for phytoestrogen solutions. Phytoestrogen refers to a substance found in certain plants which can produce effects like that of the hormone oestrogen when ingested into the body.2
I must let you know there has been some controversy about the recommendations for HRT and the National Institute of Clinical Excellence (NICE) guidelines (2015)3. Some researchers and clinicians including oncologists have claimed the safety of the latest types of HRT have been exaggerated. However, this criticism is also controversial and has been challenged! Another standoff; there are quite a few kicking about in this world of Menopause!
I’m sure you can imagine that the last thing I want to do, after undergoing treatment for Multiple Myeloma, is to then be diagnosed with breast cancer or any other cancer for that matter. Worse, if I discovered that a decision that I had made, such as to take HRT, contributed to the likelihood of me being diagnosed with breast cancer and… I hadn’t taken time to learn about the risks or weigh them up beforehand, I suspect I would become angry with myself, feel sorry for myself, be disappointed and ultimately very, very sad.
If on the other hand, I become informed as best as I can at the time (i.e. now), weigh up the pros and cons, decide to take HRT and I still get diagnosed with breast or any other cancer, I would have to say I had done my best, it was not my fault. I’d attribute my new diagnosis to be being rather bloody unlucky at that point and hopefully summon some energy to discuss and embrace a treatment plan.
I recognise that some women (and men) would rather embrace a plan recommended by a specialist or medical team, without questioning it or researching alternatives. Exercising faith that the right thing for them has been chosen and placing full trust in the people who spend time being the specialists in these areas, is one way of making decisions. No one method of deciding what is right for me, for us, for your significant women, is better than another; it’s about what works for each of us individually.
With my current diagnosis of Multiple Myeloma, I am more at risk of other cancers6 (particularly AML and MDS) so I was interested in the criticisms of both the report’s recommendations about HRT and the NICE guidelines.
Among several criticisms, on a key concern, one side says ‘up to 7000 extra cases of breast cancer within ten years’ would result from women taking HRT while the other side (also seemingly experienced researchers and clinicians) back up the Women’s Health Concern report. They argue that of 1000, 50-year old women in the UK, 23 would be expected to be diagnosed with breast cancer before they reach 60; however, if 1000, 50-year old women took combined HRT for 5 years, 28 would be expected to be diagnosed with breast cancer before 60 (an increase of five per 1000) and that taking estrogen alone is associated with even lower or no change in risk.7, 8
The Breast Cancer Now website have some very useful graphs that make risks easier to put in context. They are based on data from the Breakthrough Generations Study that aims to find out what causes breast cancer (supported by Breakthrough Breast Cancer and The Institute of Cancer Research). The graphs show that using combined HRT for fewer than five years leads to about seven extra women out of 1,000 to develop breast cancer between the ages of 50 and 54. 9,10
I have included a link to Breast Cancer Now, a link to a study about ‘the true size of the increased risk‘ and links to the write up of the controversy issued in Post Reproductive Health for you to make up your own mind. I recommend reading all of it as you will see how the critiques were also critiqued!
Final note on this…while the stats talked about here relate to women, hormones and HRT please remember men are diagnosed with breast cancer and can experience challenges with hormones also.
Surprise! (ok, not really). There is very little research available, particularly involving well powered studies (with enough participants for meaningful conclusions to be drawn) exploring the impact of taking HRT on the risk of Myeloma or Myeloma relapse. That might explain why the haemo-oncology team were struggling! One study with a summary of associations between reproductive factors and Myeloma (open about the caveats / limitations of their data), concluded that there is no significant role for reproductive factors or HRT related hormones in causing Myeloma. So, if I was going to set my store by this study, I would assume HRT is unlikely to make my Myeloma worse or cause a relapse.11,12
At the end of the day we need to ask ourselves;
Whether you have or have had cancer or not; Will the benefits of relief from Menopause symptoms outweigh the risks of developing breast or other cancers?
Plants, horses, bioidentical hormones and HRT delivery mechanisms
I love horses, they are beautiful…and I simply don’t fancy any of their hormones inside me, thanks. Years ago, ‘bad’ synthetic hormones seemed to be all you could get when it came to HRT. Pills manufactured in a lab, based on hormones extracted from horses’ urine were given to women to help with Meno symptoms. I hope GPs no longer prescribe such versions as apparently, the body finds it easier to break down plant based hormones.
These days, the reputation of bioidentical hormones (manmade hormones originating from plant oestrogens that are chemically identical to those the human body produces13) is becoming more positive, even ‘good’. For some people, anything that goes near a lab is ‘unnatural’. For others, a plant based hormone, structurally identical to those in humans, is natural enough.
The other thing to think about is the form in which to take HRT. A pill can be easy and easily tolerated by many. Although, a pill does mean the liver needs to get involved and process it. For those of us who for whatever reason need to be especially kind to our liver and not give it anything else to directly process/worry about (for instance as they continue with chemotherapy) a gel or patch delivery mode may be better. In summary, if I decide to go with HRT, I will be asking for a good plant based bio identical hormone delivered via gel or a patch.
Need a breather? I do. Coming up in part 3; Alternatives to HRT, including ‘Take nothing’, Isoflavones and Phytoestrogens. I will find an easy to understand description of what these are all about. Before I go, a small bit about Tinnitus and an important bit about a fabulous group of women.
HRT may help prevent tinnitus! I wouldn’t know what to do with myself if I decided to take HRT and it ended up positively impacting my tinnitus. I’d probably become evangelical about the stuff! More about this here (or ‘ear’!) 14
Last month, I managed to get away from hospital life for a few days and hang out with a fabulous bunch of straight talking, fun loving, wise, wonderfully womanly women. They are diverse: their ages, pasts, lives, loves, and losses. They laugh a lot, are bound together by long standing, friendship and family, and friendship within family. When they talk over the top of each other (yet still hear everything), squabble, give each other a hard time – the depth of love, caring, empathy, loyalty and commitment to being there for each other is still palpable. It was a safe place to talk about health, a safe place to talk about menopause and a fab space to ignore both topics for a while. A tonic. You know who you are. Thank you.
Please do pass the link to this blog on, like the PsychingOutCancer facebook page, ask any questions you have and do let me know….
Symptoms, updates on HRT safety, antidepressants
1 Daily Mail reporting as it might be, her diaries provided an insight into the woman’s pain and distress http://www.dailymail.co.uk/news/article-5900653/Woman-hanged-struggling-cope-menopause.html
4Myths about HRT and info on Menopause generally – Dr Louise Newson https://menopausedoctor.co.uk/news/world-menopause-day-dispelling-hrt-myths/
Some of the interviews with menopause experts.
Katie Phillips (facilitator of week of My Menopause – interviews with menopause experts)
2 English Oxford Living Dictionary (July, 2018).
Definition of estrogen. https://en.oxforddictionaries.com/definition/us/estrogen
Definition of phytoestrogen. https://en.oxforddictionaries.com/definition/phytoestrogen
3 NICE Menopause guidelines here https://www.nice.org.uk/guidance/ng23
5 The British Menopause Society & Women’s Health Concern 2016 recommendations on hormone replacement therapy in menopausal women http://journals.sagepub.com/doi/pdf/10.1177/2053369116680501
1 Post Reproductive Health http://journals.sagepub.com/doi/full/10.1177/2053369116629288 (second part of paper with numbers may require payment unfortunately re war of words and numbers – reference below)
Increased risk – true size – Jones, M. E. et al. (2016). Menopausal hormone therapy and breast cancer: what is the true size of the increased risk? Br. J. Cancer, 115, 607–615 https://www.ncbi.nlm.nih.gov/pubmed/27467055
7 Brown, S. (2016). NICE menopause guidelines: A war of words and a war of numbers. Post Reprod Health. 22(1):11-2.
8 Daily mail report referenced in S Brown’s NICE menopause guidelines: A war of words and a war of numbers. New HRT advice is biased and misleading
9 Breast Cancer Now – HRT and Breast cancer risk
10 Breast Cancer Now – HRT and Breast cancer risk – underestimated? http://breastcancernow.org/news-and-blogs/news/effect-of-combined-hrt-on-breast-cancer-risk-likely-to-have-been-underestimated
Second Cancers After Multiple Myeloma
11Reporoductive factors and Multiple Myeloma http://cebp.aacrjournals.org/content/cebp/early/2015/12/29/1055-9965.EPI-15-0953.full.pdf
12 Italian Study https://www.ncbi.nlm.nih.gov/pubmed/15554564 (note this study wasn’t corroborated by other, though smaller studies)
Hormone replacement therapy decreases the risk of tinnitus
Cat_dog – Paul J Everett_standdown (Flickr and Creative commons_public use)
Horse (Prince) – me
Swaggy – Christin-Hume
House – Cindy Tang – 25654
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.