cervical and radiation/chemo

[Beccnat]

Hi Louisa, I'm researching and working through the whole lymphedema spectre now as well. One thing I did do was find a physiotherapist who is accredited/ specialises in lymphedema 'Complete Decongestive Therapy' and I was assessed and fitted with compression stockings before I started my treatment. I have been wearing these off and on since getting home from the hospital on Wednesday. I have really noticed a difference and feel much better while wearing them. I have found that the research varies widely on the percentages of women affected by lymphedema following treatment for gynecological cancers , from 15%-30%. Chemoradiation and surgery seem to have similar risks for developing lymphedema. I will have the triple-whammy, having all three treatments! Also the onset is very unpredictable, ranging from within weeks of treatment to many years later. I've started already, even before the radiation. 😞 Useful articles: Beesley, V et al 2007, 'Lymphedema after cancer treatment: prevelence, correlates and supportive care needs', Cancer, vol. 109, no. 12, pp. 2607-2614. Bergmark, K et al 2006, 'Lymphedema and bladder-emptying difficulties after radical hysterectomy for early cervical cancer and among population controls', International Journal of Gynecological Cancer, vol. 16, pp. 1130-1139. Habermann, TM & Steensma, DP 2000, 'Lymphadenopathy', Mayo Clinic Proceedings, vol. 75, pp. 723-732. Ryan, M et al 2003, 'The experience of lower limb lymphedema for women after treatment for gynecological cancer', Oncology Nursing Forum, vol. 30, no. 3, pp. 417-423. 'Exercizes', viewed 28 November 2008, <> National Lymphedema Network 2008, 'Position statement of the National Lymphedema Network. Topic: Exercise', viewed 28 November 2008, <> I, too, am totally bewildered at the thought of no running or jogging. But yoga and swimming are included on the list of benefitial exercises, so all is not lost. Regards, Beccnat  

[#2]

Hi Beccnat, That is quite a story! Glad to hear you are recovering well from the surgery. Its really good to finally see others posting in this section. I have been on here since the forum began and most people tend to drop by for a message and never come back. I know its hard to talk about for some people but I find it helps me. I have had a few issues with lymphoedema. The trick is to catch it before it becomes a major problem. The stockings are good when there is no swelling and is a definete must for any air travel.Applying an antibiotic cream to any bites and not shaving your legs, I use the hair removal cream now. The one thing I have had to program myself to do is to keep the problem leg elevated as often as I can even if for just 5 minutes. For me falling down the stairs was pretty much it from that day on that ankle has been a problem, and unfortunatley once you have it, you have it. Also the heat is not good. Swimming is the best thing you can do and the deeper you are in the water the better. I go through a good lymphoedema clininc in Hornsby in Sydney. Having said all that; Most days my lymphoedema is only noticeable by me. I can feel the pressure, sometimes it is swollen and my hubby notices but usually late at night after Ive been on my feel all day. My Oncologist says its amazing it always effects the left leg in most patients, I say I think its because he's right handed! Hope to chat soon & take care. Butterfly

[louisa]

Thanks beccnat! I am chasing this information as we speak - i am sorry to hear your story, no not all reproductive cancers are slow growing, it seems most are but not all.  I wish you every sucess and every thing you need to win your battle, hang in there and remember the mantra, you are going to get through this.   I have decided to go with the radi/chemo option because cisplatin is also used for lung and bladder cancer so if there is anything lurking in the bladder still it should kill it , along with the cervical and uterus as well, they said there was an 80% chance they would get it all, but i dont want to have to have an op + this too, and its just too seductive that lymph node damage after radi/chemo is not usually as great as after the op, however i do understand that damage to the bladder/bowel could be greater than the op.  its just an all round awful decision, but im getting better at making it.

[louisa]

here goes.  ..... my mri came back, and i have been told that operation is no longer possible for me.  even though i had just about decided on radi/chemo i feel upset that my choice has been taken from me even though i know its good because i no longer have to make a rotton choicei just feel so bad i just want to run away, i dont want any operation and i dont want any radi/chemo they want to put it in and out, i want to run run runand im afraid i will

[#5]

Hi Louisa, Sorry to hear you are feeling the stress although its understandable, give yourself a break. Its totally okay and quite normal to feel overwhelmed by everything. So they have said no surgery and they want to just do the chemo/radio?  I know how you feel about just wanting to run, but you can instead stay & fight; you will get through the treatments. I remember days like that where I just couldnt face it and I just wanted to pretend it wasnt happening but I can look back now and understand it for what it was,  shock and the stress of it all. Please post back and let us know how you are doing today. Keep your chin up..

[louisa]

still not so good i just want my body the way it is and my right to a natural menopause in my own time and to carry on with my life i am just finishing my fine art degree and should be out starting my career off or doing my dip ed to teach like everyone else but i barly scraped through this term with this crappy cancer malarky and now there is no direction but hospitals and poisons. i am an abuse survivor and have always been a fighter ruled by my own determination but i cant seem to find any for this

[Beccnat]

Louisa, I am so with you on this. It's scary and painful and there are no guarantees. It sucks! Just be thankful you didn't go the surgical route only to find out you need CT/RT as well. And with Cisplatin you probably won't lose your hair! We can do this. Beccnat

[#8]

I know what you mean, it is crap...there are better words but none that I can use on here. And the menopause thing I can relate. I was in the midst of having a family fit and otherwise healthy  then at at the ripe old age of 31 went into menopause. Yehaa, I couldnt believe it my surgeon had tagged my ovaries up high into my abdomen during the surgery in the hope that the radiation wouldnt get them but no luck. But it is no sure thing that you will go into menopause. Cisplatin can sometimes cause menopause symptoms to come for the short term but these symptoms do ususally go, its the radiation thats the problem. After grappling with the prospect of menopause, which nobody seemed to understand, I just decided that I could look at it for what it is. My hormones dont define me as a woman or mother and it can be a positive change in life if you just let it be. But you should really just wait and see what happens with you. If might not be as bad as you think, but I can totally understand your fear. Your main goal now is to get well. Try not to think about the side effects too much just acknowledge that you might get some of them down the track and that you can deal with it if or when it happens. Like beccnat says ..... You can do this.

[louisa]

thank you i know what you say is true.  There is no not going into menopause for me though, because they said that after the radi/chemo they will do intrnal radiation and they will aim it at my cervis uterus and ovaries, they will actually aim it there.  i dont think theres going to be any comming out of that.  i know that the oncologist i have now is very good to me he has gone to another hospital to set up the last part, the internal radi so i can have it all under aenesthetic (they wont at this hospital, they wake you up after they put the rods up) because of my background i just didnt want to be further traumatised by being awake while i get killed on yhe inside again.

[Beccnat]

Louisa, I was really scared about early surgical menopause (I'm 45). So far it hasn't been too bad. The first hot flash (that I can remember) happened 8 days after the surgery. I honestly thought I was having a heart attack. My heartbeat became very erratic and I began to sweat profusely. I was just about to have a panic attack (having lots of those since my dx) but suddenly tweaked that it was probably a hot flash. Did some controlled breathing to calm myself down, had a cool glass of water and managed to get back to sleep. I had 2 more that night. Still having between 6-12 hot flashes a day, but they honestly aren't bothering me that much. I know they are interrupting my REM sleep, but since I'm on sick leave atm, I can have naps during the day. I'm investigating using SSRI antidepressants, which are supposed to provide relief from the hot flashes as well as helping with the anxiety and depression. I think I'd prefer that to HRT. I'm not in any rush though, I'd like to wait and see if I can manage without. Here's a couple of links I found useful: http://www.jeanhailes.org.au/images/stories/Education/Documents/info/2005early_menopause.pdf http://www.jeanhailes.org.au/images/stories/Education/Documents/info/2006earlymeno_wellbeing.pdf Cheers, Beccnat