Weight Gain | Herceptin

We get lots of herceptin related comments and questions - here's another:

Does herceptin cause weight gain?

One of our readers left a comment in the box to the right saying that she had "put on loads of weight while on herceptin treatment" and wondered if there was a direct connection? I can't say this happened to me - eyelashes and feeling cold were my biggest bug bears ... but what about you?

If you've have (or are having) herceptin treatments then did it cause you to gain weight?

Leave your comments below so that others can share in all of our experiences.

Treatment For Tiredness Due To Herceptin

This is a question posted by one of our readers using the box to the right of this page. We'll feature more of these questions as posts on the site ... and we NEED your feedback to help find answers.

One of the many things we've discovered on our breast cancer journey is that while doctors and specialists have many of the answers - they don't know everything. There's a huge store of knowledge out there amongst the "rest of us."

So - is there a treatment for tiredness due to herceptin?

Many women who need herceptin treatment report feeling fatigued or flu like on the day of treatment or on the day after. Feeling cold deep inside is also quite frequent.

But what's the best treatment for this kind of herceptin fatigue?
Just old fashioned resting up seems to help. Other's turn to caffeine or vitamin supplements.

What's worked for you?  Please share your experiences.

Breast Cancer Awareness Month

Hard to believe it's October again isn't it.

Here in Scotland it's getting colder and wetter and the leaves are starting to drop - not that it hasn't been like that most of the last three or four months of course. Gordon's just back from a trip camping on the Island of Berneray in the Western Isles and still hasn't really warmed up again nearly five days later.

Anyway - the reason for this post is that October is of course Breast Cancer Awareness Month. Please be involved. Join in a coffee morning. Do something to raise some funds. Be a bit silly. Wear pink to work. Just celebrate the fact that you are alive and healthy.

Go live life like you mean it - start today.

Marjory

Berneray - Western Isles

Shoulder Pain And Breast Cancer

Pain around the shoulder is common after breast cancer treatments.

The surgery often causes muscle tightness, lymph node removal can trigger nerve pains, cording is common after mastectomy and radiation treatments often result in frozen shoulder and other related problems.

A new article in the Nursing Times journal highlights the need for a proper review of the kind of shoulder exercises that might work best for women who have had breast cancer treatment. They looked at almost ten years worth of published research. Three reviewers critically appraised the studies and categorised them according to the amount of evidence they generated. Only the best studies were included.

They found that both early and delayed exercise had no effect on the occurrence of lymphoedema, although starting exercise training and physiotherapy quickly after surgery was most effective in avoiding shoulder motion deterioration.

If you've developed a frozen shoulder or neck and shoulder pain after breast cancer treatments then you might find Gordon's ebook helpful.

You can download a copy here.

Breast Cancer Insurance - An Update

A few weeks ago I posted an article about a company providing breast cancer travel insurance and mentioned that it had been set up by Fiona MacRae

I received this message from Fiona by email today:

 I am contacting you because I notice on your web site that you mention me and that I created a travel insurance product called Insurepink. I wanted to let you know that I now left the company who own the Insurepink brand and therefore have nothing to do with Insurepink anymore. All is not lost however, myself along with the Underwriter who underwrote the Insurepink product have developed Insurancewith.com, which again is based on my experiences of trying to find travel insurance after my breast cancer diagnosis, but expanding it to cover all types of cancer, not just breast cancer. I would be grateful if you could make clear on your site that I am no longer involved with Insurepink and if possible a link to my new company http://www.insurancewith.com/. 

No problem Fiona
Happy to put the record straight. I love the fact that you work so hard to help sort this out for people.

Marjory.

Breast Cancer Survivor - Sites And Blogs By Survivors of Breast Cancer

I'm never sure if it's just a weird coincidence - or if it's something about the experience and breast cancer journey that triggers this - but there are an awful lot of women who, like me, are driven to write about their experiences online.

Breast cancer survivor blogs and sites are becoming more and more common and they cover a fascinating range in their scope, their style and their intent.

Our site here is a mix of (hopefully) useful factual breast cancer information from Gordon and personal reflection or supportive thoughts from me. Some other blogs take a similar approach, others come at it from a different angle.

Here are a few of our favourites - if you know of others then please leave a comment below.

Jan Hasak has a wonderful site devoted to patient advocacy, lymphedema and living live fully as a breast cancer survivor.

Ann Silberman from Sacramento shows the quirky humour approach taken by many in her site called Breast Cancer? But Doctor ... I hate Pink !

Jeanette has supported thousands of women over many years on her wonderful Two Hands ... site - exploring her own breast cancer treatment experiences (and there have been lots of them ...) with humor and real insight. Sylvie Fortin does the same over at Breast Cancer Victory - exploring her feelings and giving helpful advice.

No doubt as you read this you know of others - maybe you write your own - maybe you're starting out on the big cancer roller coaster yourself and wondering about blogging or writing to help get you through?

Sites like ours and all those mentioned above do make a big difference and over the years I've had hundreds of emails and comments from grateful readers. If you're writing then keep it up - more power to your elbow. If you plan to start then please do - it's very worthwhile, both to yourself and to those who read your posts.

PS: Just noticed that this is our 100th post to this blog site. Wow, who would have thought it when the journey started and we first wrote four years ago - next target ... 200 of course.

Love and good health to all

Marjory

Breast Cancer Travel Insurance

Getting travel insurance after breast cancer is sometimes difficult - as is getting any kind of insurance after breast cancer of course. Trying to find decent life asurance, PHI or work related policies and even simple travel health insurance can result in hours and hours spent on the phone or searching online.

One of our readers posted this as a question and it's a great one.
We'd love your help to build up a suggestion list for companies who can provide good quality and reasonable price breast cancer travel insurance policies.

There will be variation between countries of course, we realize that but please share whatever information you have on the subject.

In the UK we particularly like InsurePink - a company created by a breast cancer survivor and dedicated to providing a good service to those who have come through the breast cancer ordeal and want to get back to a normal life again. The founder of Insure Pink - Fiona Macrae persuaded Equity Insurance to help support the project and the plan is to cut premiums by around 50% for breast cancer survivors who want to travel.

Have you tried their policies?

How did it go? Please leave a comment

FEC chemotherapy | CEF chemo treatment

What is FEC or CEF chemotherapy?

This question was submitted to us using the box in the right margin of the page - if you have a question then you can ask it just by typing it in. We'll try to answer it for you or for others to share.

FEC and CEF are the initials of three different chemotherapy drugs which are commonly used in breast cancer.

The drugs are:

• Cyclophosphamide
• Epirubicin
• Fluorouracil

In the UK the abbreviation is normally written as CEF - in the USA it seems more common to write it as FEC. The treatment is the same in both countries.

Chemotherapy drugs in breast cancer are often given in combinations or "cocktails" - the evidence seems  to be that this gives a more powerful effect and a more effective treatment.

Have you had experiences of this kind of chemotherapy too? Leave a comment below and share with others.

Mastectomy Bra - Choices .... Choices ?

Ok - here's a plea for your help - please leave a comment and contribute if you can. You'll be able to offer great support and help to others reading this.

Having written several times about my own difficulty finding a decent post mastectomy bra, I get frequent emails asking for advice about what to do. I remember only too clearly the trauma I felt - and the despair at times - when searching for something to wear.

When I first started looking for mastectomy bras the only ones that seemed to be available were like something my mother would wear .... no offense mum ! Not having a big bust to start with I'd always been able to wear T shirt type bras - but the only mastectomy ones on offer were (as my daughter called them) "over the shoulder boulder holders." Far from making me feel feminine and pretty they just made me feel frumpy and made the whole experience all the worse for that.

Most mastectomy bras are pocketed on both sides but there are some companies who make them without pockets - useless!! The prosthesis just seemed to have a mind of its own and moved around everywhere. Not a good look.

I never really did get the balance right. I found a bra that worked well for me - but didn't like how it looked. I found one that I liked the look of but couldn't get comfortable with it.

If you are looking online the Nicola Jane range is very practical and the bras work well - however, mastecomy bras are much more expensive than normal bras and again I found them rather old fashioned.

So ... again ... can you help with this for others?

If you've found a good bra post mastectomy then please leave a comment below. If you know of a good supplier or a good comfy option then get in touch.

More on this subject later.

Marjory

Breast tenderness - a symptom to worry about?

Should you worry about breast tenderness?

Marjory and I often get email requests for advice or information - and the subject of tender lumps or tenderness in the breast comes up often. So - what would you do?

Firstly, I think there's an issue about the definition of the word. Tenderness for you might be pain for someone else - or might not even register as discomfort for another woman. None of us are the same in how our body reacts to pain or pain related symptoms. I remember having a sore shoulder after my mastectomy and wondering if all women found it this painful or if it was just me?

Secondly, is the symptom constant and ongoing or intermittent and only present for part of the day or for a part of each week or month?

But let me say again what I've said many times on this site. If you're worried about any breast related symptom then go see a doctor and have a check over. Don't rely on sites like this for information. Yes, we can try to help and educate but if you're worried you need to see someone medical for an examination.

So - back to the topic of tenderness in the breast or breasts. What does it mean?

Usually the problem relates to hormone changes - seen for example in early pregnancy or as a side effect of contraceptive medications like the pill or contraceptive injections and implants. The new Implanon contraceptive often causes breast tenderness and discomfort. Other non hormone medications can also trigger this symptom but this is much less frequent.

Some women feel their breasts tender every menstrual cycle as they get near the time of their period. This can sometimes be a part of what's sometimes called the "Pre Menstrual Syndrome" or PMS.

Older women also sometimes experience sore or aching breasts as they enter the menopause. The fluctuating levels of hormones can trigger significant discomfort.

Less frequent causes of tenderness in the breasts might include Hormone Replacement Therapy treatment, previous injury to the area, fluid retention relating to other diseases and conditions, large cyst formation - and rarely it can relate to a high regular alcohol intake.

Can breast cancer cause tender breasts?
The answer to this is yes - it can .... but it doesn't usually do so.
Most breast cancer lumps are painless but some forms of breast cancer (like inflammatory breast cancer for example) can cause widespread discomfort, tenderness, soreness or pain.

So - what's my message? You guessed it - if in doubt then go get a check over ...... Please ?

Posted by Gordon - please leave your comments below.

This too will pass ....

What is it that keeps you going as you struggle with the breast cancer experience?

What get's you through when things seem overwhelmingly bleak?

We've put the first verse of the poem Invictus top right of this page - now made famous by the recent Matt Damon and Morgan Freeman film of course - but around as source of inspiration and courage to many for more than a hundred years. The words are great and if you don't know the poem you can read it and more about it here. William Henley didn't have cancer but he did suffer from tuberculosis in the bone and spent much of his life struggling to cope after having his leg amputated below the knee.

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

There must be many other poems that reach into our lives and lift us up when we need it most.

Maybe for you it's a song - or a film? Or a book? Or a photograph .....?

For Marjory and I it's a pair of simple rings. We went out together and bought them about a week after the diagnosis was confirmed. They're engraved on the inner side of the band with the words

"This too will pass"

When things get tough we take them off and look at those words, and we remember how we felt and what our fears for the future were on the day we bought them.

No matter how dark the night is that covers you, there is and will always be light at the end of the tunnel. You just need to have faith that the bleak spell will pass and that the sun will shine again.

What do you do to keep your head "bloody, but unbowed"

Share your own experiences below. Reading how others cope is a great source of strength and comfort.

Be well

G and M

Flap breast reconstruction

Flap breast reconstruction involves taking skin, fatty tissue and sometimes a thin layer of muscle from elsewhere on the body and moving it to the area on the chest wall where the original breast was removed.

In Marjory's case she waited a long time after the original mastectomy operation before she decided to go ahead with a flap breast reconstruction procedure. This was partly because she wasn't fully sure that reconstruction was the right thing for her as an individual - and partly because she had undergone fairly extensive radiotherapy treatment and wanted all that to settle down before any further operation.

One of the concerns some surgeons have about doing breast flap reconstruction at the time of the original mastectomy is that radiotherapy can make the new flap contract or shrink - spoiling the desired cosmetic result. If you don't need radiotherapy then going ahead immediately might be a good option for you - but even then it might make your recovery period more prolonged and could leave you more at risk of short term seroma problems.

The word "flap" is used because the surgeon will take some skin, fatty tissue and muscle from another part of your body but will keep it attached to its blood supply. This "flap" can be taken from your back over your shoulder blade or it can be from your tummy area just below the umbilicus.

You can read a good article about breast reconstruction after mastectomy here.

Breast cancer blogs

People write blogs about breast cancer for all sorts of reasons.

For us it was part desire to reach out to others and offer support, part a kind of need to write in the hope of making some sense of it all. Others write blogs to keep friends and family up to date, some write for political reasons - and some are just purely personal explorations of what it means to deal with breast cancer in today's complex world.

We've got a list of our own favorite breast cancer blog sites to the right of this page - but you'll find another good list here.

It's easy to set up and publish a blog .... but not always easy to keep it all active and up to date because life has a habit of getting in the way at times ! If you're going through a breast cancer journey - either personally or in your family, then you should give some serious thought to doing a bit of blogging about it. What started off as just a journal for us has provided support to thousands of others all over the world.

Go get started - let us know what you're up to and we'll give your blog a mention on the site.

Good luck - and enjoy

G & M

Bitter melon fruit and breast cancer

Stories about fruit, plants and cancer seem to come around every week or so don't they? Bitter melon extract is the latest one of interest ....

Bitter melon is not really a melon at all - more like a gourd and sometimes called the wild cucumber. It's a strange and knobbly looking thing.

However, true to form, scientists have looked at it's so called healing powers and found key ingredients of the bitter melon fruit interfered with chemical pathways involved in cancer growth - well, in the laboratory at least. They also think it can help lower blood pressure.

The research suggested that the melon fruit extract turned off signals telling the breast cancer cells to divide and switched on signals encouraging them to commit suicide. Experts told Cancer Research journal more trials were needed. Well (said with a wry smile) - they always do don' t they.

Now - don't get me wrong, I'm not being a huge cynic about this. There could after all be something in it - but we really do have a long way to go on this one.

Even the study author is pouring cold water on the stance that some press reports are taking. Although promising as an anti-cancer agent, trials in animals and then humans are still needed and there is of course absolutely no proof whatsoever that eating the fruit has any effect once it's digested. It's a big step from using an extract on raw cells in a test tube, to eating it in our diet and expecting a benefit.

Thousands of plant extracts seem to be able to influence cancer cells in the lab but only a very few make it through research into actual use for patients.

For the moment it seems better to focus on getting the message across about things we know to be true. Drinking less alcohol, being more physically active and keeping a healthy weight can all reduce the risk of breast cancer - and these are solid hard facts, not speculation.

Makes you think - doesn't it.

Gordon

Four years on ...

Well - here we are.

It's nearly four years since Marjory was diagnosed with breast cancer and all in all it's been quite a journey. We're sorry if the blog posts here became intermittent and the trail went a little cold but hey ... normal life intervened :-)

We both feel we wanted to get this site going again, not because of any new problems - but in response to your many requests for updates. So the old place has had a lick of paint with a new site layout and there'll be a new drive to bring you up to date information and support.

The last four years have been an adventure all ways up really.

Marjory's about to celebrate her 45th birthday - and it's four years now since diagnosis. Touch wood - all's well.

She's had experience of just about everything breast cancer can throw at her:

Mastectomy, chemotherapy, radiotherapy, more chemotherapy, herceptin, zoladex, oophorectomy, arimidex, letrozole and then bilateral TRAM reconstruction with a second mastecomy just for good measure - I guess that's what you might call "throwing the book at it"

Anyways - it's good to get to know you all again.

Please keep on visiting - and keep on leaving your comments.

If you'd like to share your experiences or to ask a question that us or others could help you with then go right ahead and leave a comment here.

Be well - and be happy

Gordon

Oh - should have said - that's Anna in the picture with her favourite of the labradoodle puppies we were (ahem) blessed with just before Christmas last year. We had seven .... made for a busy holiday season ........ :-)