Womb cancer diagnosed

Hi HI my name is Mo I’m 63 was feeling well apart from sciatica and leg pain in bed at night had a croaky throat and sore throats occasionally but this was put down to my inhalers so I did have an X-ray on my hips and right knee but this was put down to being degenerative nothing serious, Dr also did blood test and I was low in B12, so had a course of tablets for this. Not long after this I noticed pink discharge was told to take urine sample in which came back with small amount of blood and repeat in 2 weeks Ingot straight onto the email to surgery and said don’t u think a lady of my age post menopausal and  bleeding should have further investigations, I had a phone call the next day for appt in the surgery Inwas examined by the prescribing nurse manager who was brilliant she examined me and said she could see pink discharge, discharge and soreness which I could feel.  The next step was referral to Gynaecologist before this appt happened I had a trans Vaginal examination in Ultrasound they told me my womb was thicker than they would like, also a blood test the Dr did was showing cancer markers were up.  When I had appt with gynaecologist the Dr did a hyteroscooy which she took biopsies ouch very painful think you should be given pain relief for this, the Dr then sat down with me and said it was cancer she could feel and see growths said it was quite bad but they could treat it, I said is that end of life TLC oh no she said we can treat it.  I was on my own my husband was in the reception waiting for me so he was brought to me as they were sorting out pre op for another biopsy as I would of bled too much.  As you can imagine this was devastating for all my family and friends I had my pre op assessment a few days later that went ok I had a letter for an appt for this over a month later I was so angry what was going to happen in between so I found out the number for the secretary of the consultant and my specialist nurse she managed to squeeze me into a clinic with the consultant he said they would be having an MDT meeting on the Monday and having a look at my biopsy results he more or less told me what the previous Dr had said so the nurse rang me on the Monday to say it was womb cancer they wanted to do the other biopsy to get more info and they booked me in for a CT scan and MRI I went for the CT scan the specialist nurse rang me with the results about a week later it was bad news they don’t like giving the info over the phone but I was prepared I had my husband and son his partner and their 2 dogs with me it had spread from the womb nodules in the pelvis under breast bone and multiple nodules in both my lungs we were all devastated thought this was the end so they weren’t giving me the MRI scan or the biopsy op as they weren’t operating just chemo and maybe hormone treatment it’s not curable just treatable as they call it palliative care the whole family are so devastated my husband is beside himself, I’ve been for my oncology appt and they have given me a fulL MOT assessment lungs kidneys all Ok no fluid in stomach I’d just had a chest infection over Xmas so was relieved my chest was ok my first appt is 14 th Jan think I had a cancellation I’m having 2 drugs in a drip every 3 weeks over 18; weeks so the fight is on I  a strong women so hoping I will be ok with it as if not there is only hormone treatment I’m sure I’ll be fine they told me all the effects it may have I’m sure you will all know who’s had this treatment. You won’t believe this but when I came back from the oncology I started with a urine infection had antibiotics off the Dr yesterday and this has started to improve so hope that will be it now until my chemo sorry for this long story but wanted to put it out there I’ve got a good support network so I  lucky there and I’m very positive so got my boxing gloves on ready to smash it in the face 

kind regards to I all 

Mo 

  • Hi Mo. I'm so sorry I wasn't around to welcome you when you posted this. I myself have recently started palliative chemo so I know exactly where you're coming from with the shock and devastation but like me, you're going to kick this thing in the ar**e. You're not alone in this!

    I haven't been about for the last couple of days, had my second chemo on 31/1 and it's on about day 8 (yesterday) the worst of the side effects hit me with sickness and diarrhoea. I'm having 6 cycles, the next on 21/1, then a short break whilst I have my CT scan to see how the tumours are reacting. If you read my bio you'll see I had a hysterectomy 18 months ago and had the all clear from the womb cancer but blooming thing has popped up all over.

    I'm sure the other ladies in this group, who are brilliantly supportive will be along to chat and offer a virtual hug.

    Fire away any questions you may have, someone's usually around to answer.

    Sending welcoming hugs, Barb xx

    I'm a community champion

    Womb cancer forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

  • Thanks Barb so lovely to hear from someone who’s going through the same traumatic experience but so sorry too have my first chemo 14th Jan Carbiplatin and pacitaxel one after the other how were u a after your first one did the effects kick in straight away sickness tiredness any pins and needles in feet and hands not sure whether u are having the same chemo and how long were u there for. I have to go for covid text on Tuesday and self isolate until the I go n the Friday.  Thanks so much for the support 

    hugs back to you too xx

  • Hi Mo. yes I'm on the same treatment Paclitaxel and Carboplatin. The day following I felt on top of the world but that was due to being pumped up with steroids, antihistamine and anti-nausea. Slight side effects kicked in on day 3 which was the pins and needles in the fingers due to peripheral neuropathy, the following day my feet were a bit sore. Day 8 was the worst on both occasions with diarrhoea and vomiting, then, once purged, feel a bit better. The pins and needles persisted all the time and it's important to tell the nurses about it. I now find typing difficult, another reason I'm not about quite so much.

    It was a long day, arrived at 09.00, was weighed, height taken, bloods results checked and a chat about what to expect then signed paperwork. The canula was put in and steroids, antihistamine and anti nausea given. Takes about half an hour then a half hour wait then Paclitaxel given over about 3 hours, saline wash through then Carboplatin given over an hour. Final saline wash through and good to go with a 3 day supply of steroids and anti-sickness pills. I left about 15.30 so just over 6 hours.

    Take something to occupy you, kindle, tablet sudoku etc. You're supplied with tea, coffee and lunch and looked after very well!

    As you'll have your blood test usually the same day as your covid swab, I'd recommend you call the chemo suite that afternoon to make sure the results are through (or the next day). When I last went on 31/1 my blood results taken on 29/1 weren't available so I had to have more taken that morning. Sometimes the lab can take up to 2 hours to process so it's an idea to call and check, otherwise a wait before you start as they won't do anything until they have them. On occasion I've read elsewhere if the bloods flag something like an infection up they can't continue that day and will delay.

    I also started a daily journal and put everything in it, temperature, weight, constipation, diarrhoea, tablets taken whether I had an appetite or not. Helps when you go for each cycle as they'll ask about all these things.

    BTW food tasted like cardboard days 6 - 11 so spice things up!

    Hugs, Barb xx

    I'm a community champion

    Womb cancer forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

  • Hi Barb

    Thanks for all the info, I have my covid test on Tues and to go for bloods on the day or 2 days before my chemo which is Fri so that will mean bloods done Weds or Thurs, I’m supposed to self isolate then after Tues so they’ve done that a bit wrong as how can I self isolate if I have to go for bloods but my Daughter in law is a practice nurse so she said she would do them for me which will be a bit better than going to the hospital I still seem to have this urine infection thought it was improving but then seemed worse then started wondering  is it infection or the cancer with everything been near that end where the cancer is so I will be ringing Drs tomorrow got 2 days left antibiotics she said if it wasn’t improving to ring her back as she wanted to get it sorted before my chemo I’m taking cystocalm as well and bought some cranberry juice yesterday so here’s hoping. I was just wondering if you have started losing your hair yet as they told me I would and that there is a wig shop my hairdresser was asking when it may occur so she can come to the house when needed so I thought you or someone else might know or is everyone different I have very thick hair too.  I read yr history that must of been so devastating for you for if to return, Hoping yr ok lovely hearing from you.

    Sending hugs back

    Mo xxxx

  • Hi Mo

    I started to lose my hair exactly 14 days after the first treatment. I was prepared for it but confess it was a big shock. Especially when I washed my hair in the sink which has one of those drainer thingies. When I scooped it out the sink I really blubbed. I'd already had my hair, which was shoulder length and thick, cut short but, thinking about I should've asked my hairdresser who comes to my house, to shave it off completely.

    They should give you details of your £100 wig voucher when you go with the rest of your paperwork. They gave me details of 4 places fairly local to where I live. If you live in Scotland or Ireland it's free. If I had a bit more energy I'd lobby my MP to get it for free!

    I also now drink Green ginger and lemon grass cordial which helps the nausea.

    I'm finding day 8 after treatment is the worst and TBH if that's the worst it can throw at me it's not a problem. I'm now on day 10 and only peripheral neuropathy in my fingers bother me. 

    Hugs, Barb

    I'm a community champion

    Womb cancer forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

  • Hi Barb

    Thanks for that it's really helpful I’ve informed my hairdresser who is going to come to my house when it happens my hair is already short  I’ll get some of those cordials in ready.  Going to my sons for Sunday dinner soon he’s happy go lucky like me so should have a lovely time bonus they have downstairs loo there too, as still going frequently.  

    Hugs go back to you

    Mo xx

  • Hi again Barb 

    i did get more antibiotics and sent a sample sample in Monday but the results aren’t back yet so wasn’t sure until today I’d it would be going ahead but I am improving all the time on these sites antibiotics so after speaking to my CNS the chemo dept and then they contacted the consultant it was her decision because I’m ok my bloods were ok and my covid test she’s allowing it to go ahead I’ve had a really anxious couple of days not knowing I did so much phoning around sending emails yesterday to get these results it was the straw that broke the camels back but I’m over it now back ready to fight again so I’ll be there 12.30 tomorrow.  Got my code breaker books ready iPad for games and books to read so I should pass the time away I know some of the nurses are still there from when I had Bowel cancer 9 years ago the nurse who rang today said she gave me my 4th round of chemo so will be nice to see them again, hope yr ok after your last treatment. 

    Sending hugs to you 

    Mo xxx

  • Hi Barb

    I went for my chemo Fri, they tested urine too and that was clear.  Paxlitacil given first they said it was over an hour I said oh I thought this was over 3 hours they said only if you have an allergic reaction so guess what I had an allergic reaction pains in back chest and stomach, all ok though they gave me hydrocortisone and flushed the drip then carried on with it I couldn’t have the other chemo carboplatin as I didn’t have appt until 12.30 and it would of been too late there was no Dr if I had a reaction to the next one. Was ok when I got home didn’t sleep much rested Sat, not much sleep Sat either think it’s the steroids, then Sunday started with pains in my pelvic area and underneath like in muscles in vagina went for a little walk to see if that may help but that night it was real bad so I rang triage nurse who advised heat pads and ring 111 for stronger pain killers if didn’t settle, and not to worry they would sort it all out in the treatment unit  I managed through the night I had frequency of urine too but thought that may have been all the fluids from the drip, I was back in chemo next day worrying I may not be able to have chemo mentioned everything but the nurse said they hadn’t heard anything like that before checked my temp was ok and I had it done told me to mention the symptoms to Gynaecologist and Dr.  When I got home I rang the Dr he said for me to have another urine test red cap one the next day to make sure it wasn’t back, also gave me co-codramol not the strongest in case made me more constipated and some gastro tablets. Things have eased I’m glad to say finally but just wondered if you had experienced anything like it no other symptoms as yet and still waiting for urine test results.

    kind regards 

    Mo 

  • Hi . Oh, that's a bummer to not get it all over in one day, hopefully next time it'll be better.

    I think the amount of chemo they give you depends on your weight (I'm 75 kgs) and also the spread of the tumours. I've lesions on my spleen and liver and masses in my peritoneum, above my vaginal cuff and up against my bowel. I didn't have any allergic reactions to anything and I think the Paclitaxel was 2.5 litres which would take about 3 hours, then the Carboplatin was a litre I think. Thankfully I didn't suffer any pains.

    I felt good the next day I think due to the steroids and antihistamine and anti-nausea drugs given.

    I had no aches or pains but had co-codamol for pain. This didn't work and did cause constipation so I'm now on oral morphine. At one time I was on 3 x 2.5ml spoonfuls and 1x5ml at night but the last few nights I've just had the 1x5ml spoonful which is making me pray the treatments working and the tumours are shrinking. I've a CT scan next Thursday so all will revealed shortly after that.

    I've my next chemo tomorrow so will report how it goes. Big hugs, Barb xx

    I'm a community champion

    Womb cancer forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

  • Hi Mrs BJH

    My urine sample was ok as I say was feeling a bit better but still back and too  to pass urine then the laxido laxatives started but not much coming out then got like bad colicky pains in my Bowel and vagina region had to start my pain killers and ibuprofen and heat pads again so a bit rough this morning with me having bowel cancer 9 years ago I’m wondering if that’s why as it was re sectioned just hoping for a day it all settles maybe I should ask about the morphine instead thanks for answering me it does help hope all goes ok with yr scan and yr next chemo how dues the morphine affect you xx

    Kind regards

    Mo