Hi All

needing to vent..........feeling very stressed, worried, down today, I think the reality of everything is hitting home, starting to think all sorts and wondering if this ache or that ache or this itch or that itch is something to be concerned about. Feeling very stressed over my surgeries, mainly the removel of the lymph nodes, this seems like such a drastic surgery?? Wondering now if this is a secondary cancer or primary area, not yet had my smear done (about 10 months over due due to dealing with this issue) worrying over that now as I am wondering if there is a link between cervical cancers and vulvar cancers,  I have one of these am I likely to have the other?? having read some personal stories on the net (granted some were many years ago and science has come on leaps and bounds) but surgeries were similar and I feel even more desperate now...I have left a message for my assigned nurse to ring me as I need to ask all these questions so I hope she rings sooner rather than later...what a day to day is going to be!!

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 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 Shazza

Hope you're ok and coping with every day life as best you can, it sounds like your husband is a lot of support to you which is what you need , glad to hear you don't have to wait much longer for your op , I had both ops on the same day so at least it was all over and done with whereas you have to wait another month for your lymph node removal. I had about 10 weeks off work but I could have done with more time, so take whatever you are entitled to and make the most of the rest, I reduced my working week down to 4 days shortly after .

Did you not have an MRI scan after your diagnosis, i found this helped with reassuring me , the scan results went straight through to my surgeon who said he felt pretty confident that it had not spread any further although they can not be 100 % of course but it made me feel a bit better at the time. I can understand what you mean about every itch or twinge or pain, even now I am more aware of anything different going on in my body.

You are not being selfish at all in how you are feeling, it is perfectly natural, we know that there are a lot of people who are suffering a great deal more but this is happening to you and it's learning how to deal with it that's the hardest thing, and you will, in fact it sounds as though you are, I am glad you are getting a lot of support from other women and wish now that I had registered on this site when I was diagnosed .

I can understand you not wanting to tell your daughters at this stage especially when they have other things going on in their lives, why worry them needlessly, I sometimes think its harder  for those around you when they know as well .

Your nurse was right in saying that lymphodema might not happen to you , it doesn't happen to everyone and they don't know why, just wait and see what happens and face it if it happens , it's is the only way.

Take care xx

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

Hi Annabel

How are you feeling? I hope your surgery went as well as could be expected? Glad you feel well enough to visit us

I'm doing OK, up and down days, as to be expected I guess. Just want to get my surgery over and done with now, They said that I would be in for +- 4 days on the first surgery, not sure how long for the 2nd? (I think they mentioned about 4 days for that one too).

Please let me know how you are etc and thank you for thinking of me considering you should be resting!!! look forward to chatting and hope you are OK. xxx

Hi Poppy

Thank you, I plan to take my ipad lol.....hopefully we can chat whilst i am in hospital! Surgery is Tuesday, although I wish it were Monday, just want to get it all going now. Hope you are ok and thanks for your thoughts.

I have a question so please ladies if you can answer, much appreciated. Can SCC be present in more than one area of the vulva? I am not sure if it is my mind but I seem to be developing an itch elsewhere (up towards the clitoris) not painful urinating, skin appears fine but i am 'aware' of this sensation. (I am currently on my period so not sure if this has something to do with it?) comes and goes, not there 24/7, does not wake me up etc...panicking though

Sigh....

xxx

Hi shazza

Yes I am fine thank you. Sorry I got the day wrong, I wish it was Monday for you too, it will soon be here though and will soon be over with. Sorry I can't help you with your question, I honestly don't know but I think the mind can play tricks sometimes and until you have your op you will think and feel all sorts, it's only natural to feel like that, you visualise this horrible illness spreading everywhere but one of the pieces of information that I was givien was that this type of cancer is very slow growing, that was one consolation so please do try not to worry,and I know it's easier said than done but you need to try and stay as stress free as possible to help you, if you can ,phone your nurse for reassurance , that is why she is there. Will be thinking of your hubby as it will be very hard for him too, waiting.... I think I mentioned that my surgeon told me straight after my op that he didnt see any more signs of cancer although obviously biopsies were still done but it was very reassuring to hear that and I am sure it helped with my recovery .

I will be here to chat whenever you need to xx

Hi Poppy

I think I am slowly losing the plot LOL, Yes, I think it is quite possible that once your recieve the diagnosis you all of a sudeen feel sick and senses are heightened so everything is wrong all of a sudden!!  I did read somewhere that it is possible but a very small percentage of people diagnosed present with multiple scc. I will mention it to the surgeon though as there really is not much I can do about it now considering how close Tuesday is Hubby is coping well and I think he too just wants to get the surgery done and start the treatments. He is going to keep himself busy buy doing some DIY whilst I am out of the house so I am sure he will be able to relieve some stress when he knocks the walls down I will ask my surgeon prior to surgery to let me know after his opinion and how it went, scary thought if they find anything else though...but I will have to face it regardless. I wish I could put all you ladies in my overnight bag and take you with me LOL!!!!

Hope you are keeping well Poppy and managing to get your feet up! xxx 

Hi Poppy

I think I am slowly losing the plot LOL, Yes, I think it is quite possible that once your recieve the diagnosis you all of a sudeen feel sick and senses are heightened so everything is wrong all of a sudden!!  I did read somewhere that it is possible but a very small percentage of people diagnosed present with multiple scc. I will mention it to the surgeon though as there really is not much I can do about it now considering how close Tuesday is Hubby is coping well and I think he too just wants to get the surgery done and start the treatments. He is going to keep himself busy buy doing some DIY whilst I am out of the house so I am sure he will be able to relieve some stress when he knocks the walls down I will ask my surgeon prior to surgery to let me know after his opinion and how it went, scary thought if they find anything else though...but I will have to face it regardless. I wish I could put all you ladies in my overnight bag and take you with me LOL!!!!

Hope you are keeping well Poppy and managing to get your feet up! xxx