Uterine Serous Carcinoma

GBear, how is your cancer now? I too have an underlying health condition- a neurological movement disorder and I get injections to stop the twitching and movement in upper back, neck and face. The iections take 2 weeks to cick in and wear off 2 weeks before I get them every 3 months so the timing of the op is critical in recovery not to be twitching. Next injections are 31st October.

Hi PicNik, certainly in need of good timing for you. My cancer was fully removed with a total hysterectomy which was super, thanks for asking, I have a renal issue that’s complicated things and I have a weird heart condition that my heart rate can suddenly plummet, they will not let me drive now until they know the cause so i am mega frustrated but they don’t have a explanation for it yet but it’s possible that its the renal problem but cardiologist thinks it’s possible neurological, but of course things have ended up extra complicated, because I haven’t appeared to have been referred and Gp is waiting on urologist when i see him which should be next week but it’s been cancelled. So now feel so much in limbo, I have already reported occasional blood spots and pain and i am preventative antibiotics at the moment because I get recurring infections. I had a bad flare up with pain in my back and nerve pain in my arms and legs i was dropping stuff and struggling with sleep so super tired. I went though a stage of restless legs, again their not sure of the reason i have been told it’s possible that the tumour in my spine which I know is active from a bone scan i had , but it’s possible that it’s irritating the spine  or it’s because I have cervical sponglitis. I have had mentioned the possibility of fibromyalgia but honestly I really haven’t a clue and telephone consultations are ok but I found it difficult to explain things and obviously you can’t show them things. My gynae oncology team aren’t happy about my renal appointment keep being cancelled most likely due to covid  but i am totally fed up having to constantly talk to the wall and chase everyone. But at least I have managed some good sleep the last couple of nights which has been bliss.

so i can certainly understand to a certain point about your neurological problem, because I don’t think anyone truly knows unless you’re going through it or gone though it, it must be very frustrating for you to have this extra worry, your totally correct your certainly don’t want to be twitching during your recovery from your op.What have your gynae said about it all and your neurologist? I hope they can work together to come up with the best solution for you. 

Sending you a big hug 

Oh no, I am so sorry that you have all these issues and instead of treating you as a whole body, you have been split into parts with no connectivity between specialists. It's no wonder you can't sle, apart from the discomfort, it's so worrying and frustrating for you. Have you tried Pals at your hospital? Forgive me if I asked you this before, it could have been someone else I mentioned it to.ou have such a lot to deal with, keep strong and vent all you like. Sending you a hug x

I have contacted PALs PicNik and that's such a great thing in these hospitals, all I have been told is that their investigating although they probably now worrying over the suddenly increasing covid-19 cases as we have been added to the local lockdown not that I am surprised. There is a lot of denial and belief among people who don't realise the damage or dont care and there all in the pub and in some cafe and restaurant all on top of each other. Apparently I heard that someone went on a pub crawl in Bolton and had covid-19 and spreading it from pub to pub and they think that's the cause there for local lockdown but here where I live they have put in new regulations to stop people from visiting friends and other families households because they feel this is what's causing the spread. But you can go to the pub! Although they have you have to only go with members of your households and support bubble ( how many will abuse that) The problem we all now face is the fact that hospitals are going back to being concerned about covid-19 and asking people to ring 111 first rather then going straight to A&E and you think how many are going to get worse and not go, you have cancer patients again in some situations facing delay or worrying about delays and treatment cancelled its no wonder anyone with other health issues are being forgotten about and of course the extra stress this causes and this so has to change, I am pretty passionate on that. I know in your case its because they really need to treat you as a whole, like you said for me and your quite correct about that. I get that, and I understand what your saying, its important that our medical teams talk to each other to ensure we get treated as a whole. Like you say you have to have injections which don't seem much fun to have on a regular basis but again if it helps you and this is important for your while wellbeing fantastic. But of cause what we don't know is if your op date being close to the time of your next injection then it could effect your recovery if they can't do it for any reason. I am no expert but would like to think that you should be able to get your injection and be able to fully focus on your recovery from your op. But of course its so close to your op that it may not be as effective so its important to know when your op will be so it can be scheduled around your injection. I suppose these are questions to ask your CNS and maybe they can coordinate things for you. You certainly don't need that extra worry on yourself. You already have so much to deal with. For me I've got used to it and maybe too excepting of it of the fact that its a complex case. What's annoying is if its some thing simple which could of been sorted a long time a go and has been dragged out, its then became unnecessary. I know when I was eventually diagnosed with cancer that took some getting

I first went to my GP in July 2016 because I was concerned that I was getting irregular bleeding, he was great and sent me under the two week protocol for scans. I had an ultrasound done and two small fibroids were seen but the nurse practisinor was concerned about an area on one side of the womb and advised I got a smear test done and that she would get s Doctor to review it. The smear test came back clear and the Doctor when I saw them said that there was nothing to worry about just a couple of small fibroids and put me on the pill. Skip a few months I wasn't feeling better and was losing weight had fatigue, the gp I then saw thought it could be that the pill I was on didn't suit me. Then in March 2017 I collapsed in pain and my GP sent me to hospital. In which I was made to feel that I was wasting their time as I only have a couple of small fibroids and they had now got the pain under control but would ask for a gynae consult. The gynaecologist couldn't be bothered to see me and I was told they would see me as an out patient again I explain the weight loss the fatigue the pain. I got told I would have a hysterscopy done so they could look at the fibroids more closely and how the mirena  coil could help someone like me, about 7 weeks go by and I am climbing the walls and asking why I hadn't received my appointment. When I did have it I couldn't tolerate the pain so they had to then organise it done by anesthetic this was two weeks later, the Doctor that did it was more or less in tears as he explained that he couldn't fit the coil because my womb was not in great shape and that there was a suspicious mass there and he had taken extra biopsy in different areas and said to ask for additional pain relief which I didn't get because the nurses on the ward said I didn't need them. So went hone in agony. Skip to about 8days later I get told I have cancer and the consultant I was under didn't even want to tell me, she got someone else to do it. So my trust in the medical profession had been completely destroyed. My oncologist is fantastic and has restored some faith and one of the GP who was new when I was battleing to get my hysterscopy done who also also pretty sure I had renal issues too is also one I have any trust in. Its takes a long time to put your trust in someone but when its been destroyed its difficult to get it back. So that was my nightmare getting diagnosed. I got so much support here on the online community when I joined after my op, being able to talk to those who get it and its a reason I now volunteer for Macmillan and try to help others to share with them do they don't feel alone and I know it helps to share because we are all different all different experience and that combined knowledge helps so many feel well you know what its not just me. I have learnt so much too from others, and my passion for arts and crafts came from my time at the hospice when I needed that extra support to deal with everything. I still do my art I started a thread here, the womb girls arts and crafts because I passionatly believe it really helps peoples welbing.

Fingers crossed for you and a big hug

Oh my, what a story, I really feel for you and totally understand the trust issue.  Volunteering and helping others I really do believe helps us too.  I'm hopeless at arts and crafts but I meditate a lot, practice Buddhism, walk and cycle and enjoy jigsaws.  I teach meditation at our local centre and volunteer in their gift shop, I've made many friends there too.  Something I won't be able to do after the op for a while is cycle which is my passion- I lead rides for HSBC Breeze to get more women on bikes and into fitness and socialising.  I am trying to keep positive but this waiting game and risk of time causing a spread is a real mind screwer, I'm lucky I have a very level headed partner.  I do hope you get sorted with all your problems soon, they can't not give life saving treatment just because there is a risk of covid - my surgeon told me that if I got covid in hospital or in recovery at home I would die but what choice do we have? ~Die or die?

I'm going to compile some medical notes today and speak to my cancer nurse this week and also pass them on to the medical secretary, they will still prioritise the most serious cases and that is only right but they need the right and complete information in order to do that.

I pray that Covid dies down but with so many people disregarding it's threat it seems unlikely. Keep busy and "go to bed with a mind of love", Buddhas advice. xx

Hi PicNik,

Glad you saw the consultant & I hope things are now a bit clearer. I understand the waiting is torture & just wanting to get it over & done with but also keep in mind that you were told "Could Be" & that the list for surgery changes all the time, so it may not actually be that long.

I know many awful things go through a persons mind at this time, Is it growing ? Is it spreading ? Why have I got that twinge ? It really is a rollercoaster ride, the only thing I can advise is to try & take it one day at a time, which is not easy I know this is when baby steps are needed. I tried to keep myself occupied whilst I was waiting for mine doing extra jobs indoors, catching up with people & things in general & also eating healthily so I was in good shape for surgery as recovery is better when you are in good health.

It's perfectly normal to worry & be stressed right now but you WILL get through this we are all here to help in anyway we can, even if you just want to let off steam.

Sending Love & Hugs 

Thankyou Just65 for all your reassurance, all of you are a great source  of information and support. I'm going on a long cycle today with a friend, I always forget my worries on the bike also doing some very special meditations over the next 4 days. I'm trying to keep positive in between major wobbles. I did read something about cancer spreading more during sleep-do you think this a a myth? Sending you a great hug for your wise words

I just can't believe your consultant said that to you PicNik Hope you enjoy your bike ride, good to get in the fresh air and it does help to calm our mind. 

Hi PicNik,it's been awhile since I was on here,saw your post and as I had the same diagnosis back in2017 thought I would reply.

Time wise in my case I put off reporting my symptoms as my husband had just embarked on a course of radiotherapy and I felt that was enough to deal with.This was August.I eventually got my act together and had my operation in December 2017.Good news no further treatment needed.

Had a couple of checkups and then placed on the self referral pathway.Its coming up to three yrs.had a couple of blips that turned out fine.With a bit of luck you may just need the op.

Wishing you a speedy recovery after your surgery,nothing to worry about I was home the next day.

The ladies on here will be a great help too you.

Love,Stargazy

Hi Stargazy, thankyou for responding, I'm so pleased to hear that you are fine after postponing your own treatment selflessly for your husbands sake. It helps to have all these positive outcomes givn to me., makes me less panicky. I hope your hubby pulled through too️ love will cure the world xx