Excessive bleeding

Hey Beth2

It is so shocking, its like ive punctured an artery sometimes with how it pours out. I'd say I'm glad it's just the cancer but what a weird thing to say ha. If it's fairly normal( as long as the quantity isn't too great) then thats reassuring, thank you for sharing your experience 

Sorry for hear about about long term side affects, Hope your OK? Are you now cancer free? Xxx

Hi Hollybean,

I started bleeding massively when I was diagnosed with Cc and prior of starting the treatment. Have you started your treatment yet? Back then the consultant prescribed me tranexamic acid to take them to stop or manage the bleeding before treatment. For me it worked fine and stopped the bleeding. Do you take them or any other medication?

xxx 

Hi Hollybean

I'm not doing too badly albeit the lymphoedema takes quite a bit of managing, thanks for asking.  I think I will be forever cautious about saying I'm cancer free so instead I say NED (no evidence of disease); I was recently discharged from my 5 year follow-up.  I hope all goes as well as possible for you.

Hi Beth2

I will also only say “no evidence of disease” because in truth that is all that can be said. Brilliant that you’ve been discharged after your 5 year follow up though! Cancer free is in my opinion quite a dangerous term because some people equate it with cure. 

I guess I’m lucky after recurrent cancer not to have lymphoedema, despite all my treatment and surgery. Small things to be thankful for I guess!

Sarah xx

Hi SarahH21

You may already know but I just wanted to mention that anyone whose cc treatment involves removal and/or radiotherapy of lymph nodes has a lifetime risk for lymphoedema. Most cc patients won't get lymphoedema but a significant minority do, albeit symptoms may not appear for many years. Early signs of lymphoedema typically include swelling/discomfort of the groin or lower abdomen or leg (often just one leg) or foot; it is a progressive disease and won't 'just get better'.  Early diagnosis and prompt treatment, ideally at a lymphoedema clinic, are important for a good long term outcome.  Many health professionals (including GPs and oncologists) are not well informed about lymphoedema so, going on personal experience, one may have to self advocate and push for a referral.

Besides Macmillan, good sources of information and support for lymphoedema include:

www.lymphoedema.org

www.lymphoedemaunited.com

Hope it's OK for me to give this unsolicited advice but lymphoedema has had quite an impact on me hence I'm driven to raise awareness. Thank you for all the support you give on this forum.

Hi Beth2

All advice is very useful to share with everyone, so thank you for this. Yes, I’m personally aware of the risk of lymphoedema but I’m sure others, especially new ladies, may not be so aware, so will appreciate your guidance. I think particularly the need for prompt investigation is critical in managing this, and I hope you’ll perhaps be able to share more advice on how you cope as it’s had such an impact on your own life. It’s definitely good to highlight what to look out for, so raising awareness is very useful for us all. Thank you.

Sarah xx

Hi Sarah21

I was very upset when I first realised I had lymphoedema but eventually I learned that the best way to cope was to accept and do the best I could to manage it.  I took on board all the professional advice, which is sometimes contradictory, and through trial and error found what worked for me - albeit I keep an open mind about trying new things. 

I have committed to what are generally accepted as the four cornerstones for managing lymphoedema, which are skin care, compression, exercise and manual lymphatic drainage (MLD) massage.

• Lymphoedema increases the risk for cellulitis so skin care is important to help prevent this. Last thing at night I moisturise the affected area with a perfume and parabens (aka hydroxybenzoate) free cream.  I treat any bites, cuts etc immediatley with antiseptic and keep the area covered if the skin is broken.
• Well fitting compression garments are important to stop the swelling getting worse.  My lymphoedema extends from my lower abdomen through one leg to my foot; my lymphoedema clinic nurse prescribes me with a made to measure thigh length stocking plus a toe 'glove' which I wear from when I get up until I go to bed whatever the weather.
• Regular exercise helps keep the lymphatic fluid moving.  I've always liked physical activity so this is easy for me to comply with; in fact I've had to cut back as intense exercise can cause my swelling to get worse.
• Lymphatic drainage massage helps to direct the excess lymph fluid in the affected area to an area where the lymph system is working normally.  My daily routine includes self lymphatic drainage (SLD) massage which a nurse at my lymphoedema clinic taught me how to do. 

In addition to the above maintaining a healthy body weight is important.

Everyone's different and some people only ever get mild lymphoedema which can be controlled fairly easily but others, like myself, may get swelling which progresses quite quickly and will need to do more to control it.

The Lymphoedema Support Network (LSN)  has been a great source of information and support for me over the past 5+ years and I will mention that they have recently published a book: https://www.lymphoedema.org/product/lsn-book-your-lymphoedema-taking-back-control/    I haven't read the book but I think it is very likely  the sort of 'go to' guide I would have liked to have had to hand when my lymphoedema first started, if not before.

Hope this helps a bit?  Happy to answer any questions.

P.S. I won't get any personal gain by advocating the LSN book

Thanks so much for sharing this Beth2. It’s really very helpful. 

May I ask what the first symptoms were for you please? Was it swelling or did you have pain with the swelling? Who did you go to to be referred to the specialist clinic? I think this is a topic that isn’t  talked about enough, and certainly during my time in treatment it was never once mentioned. Not was it mentioned prior to or after my surgery.

Once again it seems like this is another aspect of this disease that we need to be proactive about for ourselves if we suspect it is happening to us. 

I think your advice is invaluable for the group.

Sarah xx

Hi SarahH21

I agree very strongly that lymphoedema isn't talked about enough nor, generally, is there good support for it.  My route to getting specialist help could be reasonably be described as a circuitous obstacle course!

I did a lot of reading when I was first diagnosed with my cancer and I was aware of the risk for lymphoedema even before my treatment started.  I questioned my oncology team about it on several occasions but mostly got unhelpful comments like 'you're slim so you won't get it' or 'oh just wear cycling shorts'. A more enlightened oncologist told me that one of the staff at the hospital cancer centre knew about lymphoedema and I received some skin care advice and Lymphoedema Support Network (LSN) leaflets from them, which was a fairly good start.

I first suspected I had lymphoedema at the end May 2017, about 2 weeks after I'd completed all my treatment. The first signs included a slight swelling and a feeling of tightness/achey pain in my right groin plus a bit of swelling in my upper/inner right thigh and right side lower abdomen - it felt a bit like I'd pulled a muscle in my groin.  I mentioned it to my oncology team who said it was probably post op swelling but my gut instinct, and what I'd read about lymphoedema, told me differently.  When I asked other members of the oncology team where I could help from I got a vague response about NHS lymphoedema services being difficult to access. I was also given a name for a private MLD (manual lymphatic drainage) therapist in my area who I managed to contact only to discover she had retired!

I then went to a GP who diagnosed me with a pulled muscle, despite me insisting it wasn't possible and suggesting it was lymphoedema.  I got an appointment with another GP who luckily was more helpful;  measured me - found there was a difference in the the circumference of my thighs and duly referred me to the local lymphoedema clinic.  I then had to wait 3-4 months for an appointment with the clinic which is one of the reasons not to delay seeking help.

It wasn't a good situation in 2017 and I suspect it hasn't improved much since, although I was pleased to discover that a Macmillan clinical nurse specialist, who recently joined my oncology team, has been taking an interest in lymphoedema. But it seems there aren't any national standards or guidelines for lymphoedema and I think it's still often down to the patient being aware and self advocating.

Again I'm happy to answer any questions.

Thanks once more Beth2 for this helpful information. It seems astonishing that there is so little knowledge amongst the medical profession about this, and that it’s so difficult to get the right help. One of my friends suffers too and is a huge advocate of early specialist intervention: she has basically told me the same things as you have talked about here in terms of getting help early and being shown how to manage it correctly.

May I ask how much the urinary retention impacts on your life? You say you need to self catheterise sometimes, and again this is not something that’s often discussed anywhere as a potential long term complication. Obviously I’ve lost my bladder so it’s not something that affects me, but if you’re happy to talk about it I think that’s something else very helpful for the group. 

Sarah xx