Hi shazza

I have not been on this site before but have followed it for the last 18 months when like yourself I was diagnosed with cancer of the vulva stage 1, on seeing your message I had to register to try and reassure you , knowing exactly how you are feeling at this time. On being diagnosed I had an MRI scan and then was referred to a Gyno surgeon who Operated three weeks later, I had a partial vulvectomy with removal of all my lymph nodes in both sides of my groin, they were sent of for a biopsy and to my relief they all came back clear although my surgeon told me after my op that he didnt see any sign of any cancer when he removed them which reassured me straight away. Op was pretty straight forward with 4 days in hosp, but I was off work for about 10 weeks , the healing process takes quite awhile, uncomfortable at first but not too bad, the lymph node removal I found was the most uncomfortable where the fluid took awhile to drain away, the best part was knowing that there was no cancer so anything else was easy to put up with, I was checked at the hospital every 3 months for the first year and now I am on the 4 monthly check, I have slight lymphodema due to the lymph node removal but I can cope with that , just knowing that it could have been so much worse, so many people on theses forums have such sad stories that I feel I am so lucky. Hope I have reassured you a bit and you can begin to to feel a bit more positive, it is quite a rare form of cancer and there is very little information , feel free to ask me anything if you wish to.

Take care

Hi Poppy

Thanks for your reply. I am glad to hear that things are going well for you and remain free of this awful disease. I am having very up and down days as you are right in saying that there is such little information out there, I feel as if I have been diagnosed and  this is the plan, which is great to some degree to have a plan but I am now having all of the doubts and concerns as to what will lie ahead. I know in my common sense mode that removing the nodes is a sensible approach but I can't help thinking that if they are clear I am still going to (possibly) have to live with things like lymphedema. I have been told that Lymphedema does not affect everyone?? but I guess I do not feel optimistic at the moment of me escaping that one either..lol...

I have been in touch with a number of ladies who have been through the above (and diagnosed at different stages) and it is positive and theraputic to know that they are all so far free of this disease to date so that has been a big help to me. I am thankful for being diagnosed (as much as I can be) at an early stage and I am trying to make this my centre of optimism. Thank you for taking the time to chat with me, it is really appreciated. How noticeable is your lymphedema? is this something that you have to deal with daily of are there tiggers? My nurse said that excercise plays a pro active role at managing this? I am entitles to 5 months sick (with pay) and 5 months at 1/2 pay so I need to try and get back into the swing of things as quickly as possible. I sit alot in my job (computer based) so wonder if this is going to contribute to me developing lymphedema? I have also read that swimming (due to chlorine) can trigger this? I swim and I guess this would be preferred way of excersising as it is gentle on the body.

soooo many things to consider...Thanks again Poppy and I hope we can chat some more x

Hi shazza

I remember feeling the same as you on diagnosis and up until the op itself, I stayed strong for my family as much as I could as everything seemed a bit surreal and I didn't allow myself to think about it too much and I carried on with my life as normal , well , as much as I could . Not having to wait too long for things to get moving helped as well so it all happened in a short space of time. I didn't really understand the consequences of having my lymph nodes removed only that they would stop any cancer spreading anywhere else, which of course is the only thing I was interested in at the the time, your information you have received is correct, not everyone develops this and it doesn't have to develop straight away, walking is good and although you have a sit down job as Long as you can get up and walk about that will help, I work in retail so I am on my feet too much I'm afraid, hot weather , hot baths, spas ,massages, Are all triggers , dont know about the chlorine in swimming pools , i was told that swimming was good for lymphodema , you have to be careful of bites from insects or getting sunburnt ,it all sound s a bit daunting i know but honestly you soon get used to the do's and don'ts as I said before mine is mild and is in the groin and part of my legs above the knee, no it isn't noticable as yet and I am hoping it will not get worse, I was referred to an outside clinic called the Helen Rollerson center  which specialised in this, I had to go for three weeks where I had my legs bandaged daily and they taught me  to do a manual draining massage, I do an exercise daily which takes about 5 mins and I wear support stockings which I get on prescription every 6 months . You said you are entitled to 5 months paid sick and 5 half pay well I would take all this time because I think it takes this long to get back to some sort of normality,mentally as well As physically . Hope this helps you and things move swiftly for you.

I am here to chat to if you need me x

Hi Poppy

Thanks for all the info, I am so glad to hear that your experiences with Lymphedema have so far been maneagable. My kids are 20,16 and 7 and the eldest two are doing exams so my husband and I have decided for now not to tell them. Pros and cons to this decision though, hard when I need to vent but by the same token, kick up the *ss to get on with it! My family all live abroad and again I have decided not to mention anything as yet especially as my Mom who is elderly has lost 2 sisters to cancer in the last 4 months. I just can't bear the thought of telling her that I have this awful disease..I would dearly love to so that I have the support but just can't..

I want to look further into clinical trials in relation to the sentinel node removal option however I must let common sense prevail. Common sense is telling me to have the lymph nodes removed as this is my best outcome overall however my head is thinking about my kids and what sort of impact lymphedema could potentially have on them. We love holidaying abroad in warmer climates, my son only this morning asked me when we are going on holiday again   decisions, decisions, decisions. How old were you Poppy when you were diagnosed? Some questions I have is in relation to the lymph node removal, when you returned home after your surgery, did you have tubes in place still and how did you cope with this? How long do they remain in for? With the MLD where does this fluid drain to?

Thanks so much Poppy for taking the time to chat, it means an awful lot.

Hi shazza

So glad that I have been of some help to you, when I was diagnosed I used to follow this site hoping to find someone that had the same cancer as myself, as it is a rare form of cancer there wasn't anyone who related to mine at all  that is why when I saw your thread I felt I had to register so I could try and help you through this if I could, there are so many different emotions you go through and I think we handle each one differently, I was 56 when I was diagnosed, divorced too, my kids are all grown up with families of their own but they were a great support for me, I can understand you not wanting to tell your family or your children although in saying that if your eldest is a girl (you never said) i would make her aware of this type of cancer . I think once you start telling relatives you tend to spend a lot of emotional time trying to reassure them and forget about yourself.

I think regarding the lymph node removal it is the best  and safest course of action to take but you understand that, lymphodema is a lot better  option than what could happen and you just learn to adapt your life , as I said previously I didn't realise the impact it would have on my life until after the op, I did have it explained to me beforehand but to be honest my nurse made it sound quite minor so I didn't really digest it, there were times afterwards that I did get quite angry about it because i felt I hadn't been given the choice even though I know what choice I would have made.

Have you got a date for your op yet ?  And Have u got a lyphodema clinic in your hosp, most hospitals have a nurse that deals with this condition and will probably come and see you before you leave the hospital and explain it all to you, the Macmillan cancer site has a section on lymphodema that is quite helpful too. Perhaps you could  have holidays in a slightly cooler climate than what you have now, there is always ways round things, it's just coming to terms with it.

No I didn't have my drains in when I came home although I think they should have been left in for a few days more as I had a build up of fluid round the incisions which became quite uncomfortable but different surgeons use different tecniques . They were in for 4 days. As soon as they were removed I was able to come home but I have read on different sites that some people do come home with them still in and if that's the case I should imagine a district nurse would have to come in daily to check them. With mld, the type of massage which is a very light touch is worked from under the arm down to the groin which opens up the channels for the fluid to drain up to the lymph nodes under the arms , it's quite interesting how it works, funny how we don't realise the workings of our bodies until something nasty happens to us.

Take care and I am here to chat whenever you need to x

Hi Poppy

Hope your are well. My eldest two are girls and until now I have always been very honest with them especially over sex, stds, getting tested, getting smears, etc etc etc - Both girls had the hpv jab. I do plan on telling them but just not now as they are both sitting exams and I really want them to focus on this. Your family must of been a lifeline for you, so glad that you had that suuport. My husband is very supportive so I am thankful for that. I spoke to my Mac nurse today and told her my concerns over the Lymphedema and she says I am thinking too far ahead as it is not a dead cert that I will be affected by it. She understands my concerns and tried to be reassuring. I am under Liverpool Womans and they do have a lymphedema nurse who I will meet with prior to 2nd surgery. My Mac nurse assured me that they play a active role in teaching / supporting woman in this area so as to avoid this complication. My excision and flaps (so glamorous lol) is scheduled for 22/1 and lymph nodes a month later 19/2. My surgeon seemed like a really nice guy and quite honest in saying the best / sensible thing to do is to remove the nodes so that they can check them and be sure that we have caught it in time, I will go ahead and have this done, it's the right decision and as you say this is a small price to pay in comparison to not having it done.

I had to pretty much ask all my questions over today as my head is so bogged down, I'm looking for reassurance I guess that everything is going to be ok I know my diagnosis (so far) is considered early (1B) and I am thankful for that, I just have no idea as to what signs I should be looking out for as to whether this is the only affected area, are there other areas that are infected, is it likely that I have this somewhere else on my vulva etc or in my body, every time I have an itch or pain I'm thinking the worst ... I am doing my best to educate myself on this scc but I think sometimes you read so much more into it and it all becomes to scary and too much to handle. I am trying to not read up on the internet. So many ladies have taken the time to respond and I am so greatful for each and every one of these ladies, yourself included, as you all just remind me that you have all been there and are still here. I feel incredibly selfish for feeling how I do as I always try to remind myself that there is always someone going through worse than I am. You are so right in saying how little we know our own bodies, I never used to self examine below until this started!! how naive..

Poppy how long before you were able to return to work after your surgery?

Thanks again for taking the time to write Poppy, it really is very kind of you and I am learning from yours and others experiences as I go along, this forum is becoming my life line.. take care xxx

Hi Poppy

Hope you are keeping well Poppy. I am trying to cope, last night was not a good night, I just cried and cried in bed, feel a little better today, I have my pap smear to look forward to ....I am not sure why I did not have a MRI?? I did have a chest x-ray and 3 lots of blood tests, ECG and pre op prep (MRSA, finger jab etc). I am trying to not think about things too much, went into work yesterday, going in thursday and part friday to tie up some loose ends etc, I am finding it hard to stay focused but it is a welcome distraction of sorts...

I did ask about having the two procedures together and although it can be done they wanted to do them as separate procedures? frustrating, as it dramatically increases my physical recovery times. I just have to trust their judgement and decision.

I have discussed options with my HR team and I will cross that road when I get there, I am fortunate in that I have a very supportive manager and that is some comfort.

Stay well Poppy and thanks for writing, this site has been a blessing for me, it is so nice to chat to you all and I do look forward to catching up with everyone

Take care and chat soon xx

Hi shazza

Just want to say I will be thinking of you on Monday when you go in for your op, do let us know how you are when you are able to, hopefully your stay will not be too long in hospital, it is a lot better recovery when you are at home and make the most of having someone look after you. You deserve it after everything you Are going through.

Speak soon, take care xx

Hi Shazza,

It's Annabel here. Just letting you know that I am thinking of you and will be mentally holding your hand through your op. I can't belief that I am a week post op now. Time fly as they say. How long are you expecting to be in hospital, do you know? Let us know how you are when you get home. Best wishes Shazza.

Annabel. xxxxx