Newly diagnosed and totally fed up :(

[LCM7]

Hi everyone, I’ve been using the jo’s website and forum for a wee while now and it has honestly helped me so much. I just wanted to share my story, and I think maybe just get everything out and clear my head? I’m a bit fed up today .

So I’m 28, a registered nurse, I have no children and I have been diagnosed with squamous cell carcinoma from hpv.

My story is quite long and I’ve had such a horrible few years, but if you do bear with me I’ll really appreciate it, thanks so much.

In 2019- abnormal cells detected in my smear, attended colposcopy, cells removed with cold coagulation. Next smear I had was clear, the next minor changes, then major changes were found at the end of 2021. Because of covid there was a delay in between the last 2.

Jan 19th- attended colposcopy and had loop diathermy/lletz and biopsies sent. During this I had a bit of a traumatic experience, quite a bit of proceedural bleeding. Finally got it stopped with a lot of pressure, cauterising and paste applied but I was really not doing too great after it. I’m a nurse as I said and I’m not squeamish, but when its you it’s different and there was blood everywhere and the pain was unbelievable. The anaesthetic inj was wearing off before I even left as well due to the time it took. That drive home was horrendous I felt every single bump in the road.

10th of Feb (19 days ago)- phone call from my consultant who confirmed, what I kind of already expected, I do have cervical cancer and she wasn’t able to get clear margins from my biopsy despite taking a larger area.

Past couple of weeks have been an emotional rollercoaster, but I’ve mostly held it together… until I was sitting on a wee chair outside the MRI room this morning. I was on my own and a wave of emotion just hit me and I started getting teary, no matter how hard I tried I could not get those tears to stop!!! The MRI lasted about 45 mins and they added contrast and buscopan, it wasn’t pleasant but glad I’ve finally had it, the wait until today has been the worst. MDT meeting is tomorrow and hopefully have a result and treatment plan by the end of the week.

Anyway… the advice I’d really like is with regards to pain and bleeding. Has anyone else been in so much pain with this? Past few months I have been constantly bleeding and waves of pain I have is unreal, I struggle to function clearly most days with the pain and the pain relief (dihydrocodeine, buscopan, paracetamol). I’ve also been bleeding for months, I’ve been on so many interventional medications to stop this (tranexamic acid, mefenamic acid, norethisterone) but when stopped I bleed so heavy again with a lot of clotting. Ended up in hospital at the weekend passing clots the size of my palm (no over-exageration, honestly that’s how big they were).

For years I’ve been dealing with horrible periods (pain with heavy, irregular and prolonged bleeding). I’ve had queries of endometriosis/pcos however these were ruled out in Oct 2020 with an investigative laparoscopy. Only findings at that point being a distended bowel (inflamed bowel from suspected IBS).

I don’t know if this is just my worry head on or my nursing head, I’m not sure, but I’m now just thinking the absolute worst. I’m thinking I have a more advanced spread/stage. I just have a feeling something has been missed over the years, or because things have been delayed due to the pandemic. Surely they would have saw something during my lap in 2020 if it was there?

Has anyone had similar symptoms as bad as this? What has the staging or treatment plan been?

Even if there are no answers from anyone thanks so much anyway if you got to the end of this essay lol.

[Jazza]

Hi LCM7 and welcome

I’m so sorry you’ve been having such a tough time over the past few years.

I was diagnosed in 2017 after not having had a smear test for about 12 years. I first became aware there was a problem when I had an abnormal vaginal discharge which I ignored for several months. This was followed by moderate to heavy bleeding sometimes with clots and occasionally somewhat projectile - no pain in my case but it was scarey enough on one occasion for me to go to A&E in a state of panic. I was eventually diagnosed with stage 2A1 squamous cell cc and had a radical hysterectomy followed by chemo-radiotherapy. I’m nearly 5 years beyond completion of treatment and NED (no evidence of disease) so far.

So my symptoms were not as pronounced as yours but that is not to say that your diagnosis will be as bad as you fear. Everyone is different and I’m not an expert but I believe how the cancer is growing and what nerves it happens be pressing on means one may have pain where another won’t, albeit their chances for a cure may be similar

I’ve done quite a lot of networking over the past 5 years and I did meet a lady whose bleeding was so severe she ended up in A&E and needed a blood transfusion - I don’t know if she had pain This was after some considerable time of visting the doctor and being fobbed off. I met this lady before Covid and haven’t had a chance to catch up but the point is she had been treated to cure so there is much to hope for despite profound symptoms.

As you say it certainly is an emotional rollercoaster; it feels a bit better when you know what your facing and there is a treatment plan in place.

Hope this helps a bit? There’s lots of us here with a range of experiences to share. Feel free to vent and ask questions whenever you need.

x

[LCM7]

Thanks so much for your reply @Jazza, I wasn’t sure anyone would take the time to read it all never mind reply lol. Everyone on here seems so supportive and nice .

What you have said makes so much sense about the position and nerves. Honestly I have gained so much more information on here than what I have from my Drs. I think when they hear what my job is they just assume I know what to expect, but gynecology is such a vast and specialised subject and I specialise in a completely different area. I totally sympathise with your friend also because I’ve felt the exact same the past few years- fobbed off. That feeling like no one is listening or doing anything to help is such a vulnerable and frustrating position to be in.

But it is really uplifting to hear that you both also had the bad bleeding and your staging and treatment has been positive. I’m really pleased for you about the NED! That’s fantastic news!

Thanks so much again you have really helped a lot x

[Leahlouise]

Hello my lovely sorry you have found yourself in the club no one wants to be in. I can’t answer your question in terms of pain relief and symptoms, but I wanted to pop by and share my story with you and hope to help. I document a lot of my story over on Instagram where i have shared pretty much everything of my journey with cervical cancer.

I’m not 32 but at 25 at my first smear I had HPV And low level cell changes they believed would go away on their own. I don’t believe they ever did I am currently awaiting my invasive smear review to get answers about this.

I began experiencing abnormal bleeds during sex in June 2020, these were so out of the ordinary for me I knew instantly it was CC I had numerous examinations abs was told I had a cervical ectropion I didn’t it was my cancer! I even had a ct scan and internal and external ultrasound which all missed my cancer so I totally empathise with your feelings of being fobbed off,

In April of 2021 I developed sepsis due to a serious pelvic infection and abscesses on my ovaries! By this point I was wild and yelling to every doctor who saw me during my two week stay that I new I had CC They all told me I was wrong. One then agrees to send me for an examination of my womb as he believed this was the cause of my bleeding. However at this appointment ( I don’t know for certain as it’s not been confirmed yet) they didn’t carry out the hysteoscopy but instead took a biopsy none of this was explained to me at the time but I like you bled out heavily I could feel it running down my legs and feet and a consultant was called, no one told me anything at this point. It was then 4 weeks later in June 2021 I was diagnosed with cervical cancer.

Now I assumed due to delay in diagnosis and the symptoms I would have to have advanced cancer I convinced myself it was in my whole body my diagnosis was stage 2b the cancer had just started abs only slightly to creep into tissue.

My treatment plan has been a little longer than the standard and I had 18 weeks of chemo before starting the usual 25 rounds of radiotherapy chemo and brachy, so I am currently waiting for my 12 week scans after finishing treatment to see how I responded.

Sending you love and well wishes at this difficult time xxxx

[Shammy716]

Hi!

I just wanted to share my story too with you.
July 2021. I have been on the mini pill for quite some time, on and off Id say 8 years is… Ive always had my smears on time and was due one 10 days after I took ill. I hadnt had a period for a long time. I thought this was the pill and my weight. I started with what felt like a burning pressure type pain in my lower tummy. I saw my GP who reffered me for a scan with Gynae but suspected IBS.
I was slightly unsure so i booked a private scan on July 13th. She saw what she thought was a fluid filled cyst.
22nd July the pain became worse. It floored me it was like a continuous contraction. I was 999 to hospital. That started the ball rolling. A week long hospital stay and pain so severe I was on Morphine, IV paracetamol, codiene etc. I had cervical stenosis. I was then diagnosed with cervical cancer. The tumour was causing it. I would bleed badly after those painful episodes with lots of clots,almost like grit.Subsequent MRIs etc showed i was stage 2b adenocarcinoma and it had just started to move into surrounding tissue. My lymphnodes were clear. October- November i had 5 weeks chemo, 28 radio and 3 brachytherapy. I had my 3 month post treatment MRI last Weds but havent been contacted yet about the outcome. Adenocarcinomas are tricky little sods and can be stubborn so Im preparing myself to be told its not completely gone. Plus i can feel the odd twinges from where I know the tumour is.
I do know I can be cured and many ladies here have been.

[Dar8]

Hello Dear,

I am so sorry you are going through this. I wanted to reply as I had horrible pain and bleeding. I bled every day for six months prior to treatment - worsening to the point, like you, that no medication helped. I started with livable pain that we thought was due to fibroids, but over the six months prior to treatment it worsened to the point where walking and sitting were extremely painful, car rides and daily activities would set it off, sleep was difficult and pain management was a huge issue - nothing seemed to work. I was just recalling yesterday going for an ultrasound to check on my kidneys and tearing up. I had a full blown cry with a kind technician and couldn’t stop. I rarely cry in public, I just felt so unwell and scared - I had been staged at 3bii with lymph node involvement and was terrified that all of the waiting for treatment would lead to more spread of the cancer.

I wanted to reply to give you some hope - regardless of what your staging ends up being - the treatments for Cervical cancer can be very effective. Halfway through my treatment (chemorads and brachytherapy) the bleeding stopped and hasn’t come back. (My treatment started December 9). The terrible pain also lessened - I could sit in the car, at the kitchen table and walk. Treatment was hard for me, but it noticeably improved my symptoms very quickly. I went from barely being able to walk 200m because of the pain to a 5km river valley (hilly) hike today. There are so many success stories on this page at all stages.

I am so sorry you are going through this. You aren’t alone and there is so much hope.

[LCM7]

Hi @Leahlouise, thanks for the warm welcome and for sharing your story. Hearing other people’s stories makes me feel not so alone in it all.

I’ve been writing some posts on facebook about my journey so far also and the importance of smears and pushing people to go. I got my biopsies and lletz treatment done on ‘cervical cancer prevention week’ so I took it as my calling to raise awareness that this can happen to anyone (even when you’re only in your 20’s).

I’m so sorry to hear you had such a rough time with Drs listening to you also. I believe we know our own bodies, and when we are crying out for help and telling people something is wrong they should be listening.

Oh wow that bleeding though it’s horrendous isn’t it , and because the proceedures are mostly done without complication and you’re meant to be in and out I think that’s what was most alarming for me too. At that point I kind of just knew I had cancer and I could sence the concern in the room from the consultant and the nurse despite their best efforts.

You’ve had a long journey so far also @Leahlouise but I’m happy you have completed your treatment and I hope they will be your last! All the best with your scans, please keep us updated on the result x

[LCM7]

Hi @Shammy716 , thanks so so much for sharing!

Your experience seems similar to mine with regards to that contraction feeling then the clots. I’ve read up a little on the cervical stenosis also, I’m sorry that you’ve had to go through that as well as the diagnosis.

I really hope your MRI shows the best news and those twinges are just left over symptoms from your treatment x

[LCM7]

Your reply has been emotional for me to read this morning @Dar8. It has filled me with so much hope because it is so comparable with my own.

Yep, the pain comes on unbearable at times with even the 60mg dihydro not even touching it. I use heat packs and I even bought my own tens machine to try and relieve it. I felt great last Friday and Saturday, needed no meds or anything and had so much energy so I went to a wedding on the Saturday. I danced and had so much fun but by the early hours of the Sunday morning I woke up covered in blood and in agony. The pain and the bleeding is completely debilitating now, hence why I’m so fed up .

At this point I’m fully expecting to have lymph node involvement because of the pain as it radiates in my pelvic area, front and back, and also down my thighs as well. I’ve had some bowel and bladder issues regarding spasms etc also. In my head that’s the case so anything less will just be a relief lol.

I’m a totally different person than I was a couple of years ago, I used to enjoy fitness, jogging and hillwalking. In 2019 I was climbing Ben Lomond and Ben Vorlich for fun, now I can barely walk up the stairs I’m so fatigued. I feel “lazy” and I’ve put on so much weight. Feeling lazy and fat and having to spend a fortune on new clothes isn’t fun and it isn’t me, another reason I’m fed up .

I’m sorry to hear about your staging it must have been really scary. I’m so overjoyed that your treatment has been affective though and it had such a positive impact on your daily living from even halfway through! You seem to have bounced back amazingly and so fast! I can’t wait to get out walking again!
If you don’t mind me asking @Dar8, when did your treatment finish? Do you have a scheduled follow up yet? x

[Dar8]

@LCM7 - I don’t mind sharing at all - I finished treatment January 18 of this year. I spent the two weeks following pretty much in bed, then started to slowly recover over the two weeks after that. Before brachytherapy, imaging was done which showed the tumour and lymph node involvement was shrinking, but still there. My three month MRI and results are booked for April 14 and 21, so I am part of the hopeful, anxious group who are waiting for those results.

Finding out my diagnosis was very scary, but in a strange way it was a relief. I knew something else was wrong besides fibroids and that no one could blow off cancer in the same way.

Hearing my staging was really scary. I am really glad it was put to me this way. “You are staged at 3b with lymph node involvement but it is curable and we are treating to cure.”

Like you, I was a very active person prior to becoming ill and had some big plans for this summer that I was training for. As I started recovering, I experienced grief for my “healthy self” - It’s a daily process to accept where I am and what I can do now. It’s very conflicting to feel so grateful to be feeling better, but so sad that I am going to have to do all of that work all over again to hopefully get back to the same level. Appreciating each day helps - something I think we all learn to do through this whole journey - in our own ways.

Sending you nothing but good vibes! I am here anytime if you have questions or for support - as are so many others.

[Nadia]

My thoughts and prayers are with you! You seem to be a lovely person and I have a very strong feeling everything with you will go pretty well. Best wishes from me!

[Ajj]

Hi sorry to hear this and your so young!
I was given 12 mths June 2021 after a very quick aggressive growing HG ESSarcomba was found different to yours. No one local to me would operate as success rate of making it through op was too low! I am /was a very healthy slightly over weight 54 year old with No Medical problems other than reoccurring polyps and fibroids!.
Finally got a Specialist in Sarcomas to operate made it threw on 12th August now post op of 7 months I’m having chemo and radiation for three small tumours so far seems to be slowing them down. My advice is get a few opinions and don’t give in seek a Specialist if you can doesn’t mean you have to pay mines all been done on nhs in England good luck help is at hand in many ways don’t suffer in silince take care xx

[LCM7]

Thanks very much that’s so sweet @Nadia! I see you’re new to the group also, so welcome

[LCM7]

Hi @Ajj .

Oh my gosh I can’t even imagine what you must be going through! I’m so happy for you that they were able to operate though and things are looking a lot more promising I hope?

I know, it certainly wasn’t something I was expecting at 28 so raising awareness is really important for me just now, I’ve been sharing my story a bit and encouraging people book overdue smears etc. Just doing what I can I guess.

Thanks very much sharing and for your advice x

[LCM7]

Sorry I haven’t posted with any update guys…
those who have read my essay, well here’s another one lol!

As yous know I had my MRI last Tuesday (1st March). I was told by my cancer nurse specialist (CNS) that it would go to the MDT meeting the day after on the Wednesday and she would ring me for an update after this. So, I had been trying to call my CNS all week and I’d left messages and everything to get some info about time frames etc to arrange a meeting and I got no answer.

I finally got a call from the other CNS on Friday afternoon. This was after I called the gynecology ward to basically complain about lack in communication and feeling totally unsupported. I really hate that I felt I had to complain about her cause I know the pressures obv they must be under as well, BUT I had basically just been left to deal with everything on my own from them following the phone call diagnosis 3 weeks prev. Also, I had asked her to make referrals for me for financial info etc and she hadn’t done this either. I found out she was on annual leave all of last week, so why she had said she would call me when she knew she would be off is beyond me. I had been stressing for days thinking ‘this is it, this is the week, finally!’.

So yeah, by this point I felt quite angry. Then I was told it infact didn’t even go to MDT and I was absolutely gutted about having to wait another week then to find out. Apparently the MRI report wasn’t completed in time by the radiologist. I feel someone should have called me and told me tho. Anyway, the CNS I spoke to at that point was a lot more supportive. She asked all the relevant questions you’d expect about how I’m feeling about it all, about fertility, my pain, my daily living etc and arranged a meeting for me, my partner and herself to speak with my temp consultant (mines is also on annual leave just now as well). This is now TOMORROW after the MDT meeting. I’ve asked this CNS to now take over my care as I feel a lot more supported and bonded to her so hopefully things will be a little better now.

Also, side note… I found a lump in my breast . My GP said she thought it felt like hormonal changes due to the amount of medications I’ve been taking to stop my bleeding along with the fact I still have my coil in. However, done an urgent referral to the breast clinic to have me checked over to rule out anything suspicious and ease my mind. I had my appt this evening and the consultant had a feel and I had an ultrasound of the lump and everything is fine. The excess worry is over thank goodness. The consultant and radiologist both agreed that it was glandular (fibroadenoma) secondary to the hormonal overdrive and nothing to worry about.

Honestly I feel like it’s one thing after another just now but just really really glad I finally get some answers tomorrow.

P.s. HAPPY INTERNATIONAL WOMANS DAY to all you wonderful ladies, I hope everyone is well and holding on in there strong and fighting xxx

[Dar8]

I will be thinking of you tomorrow and sending all,of the good vibes that I have!

[Andrea138]

Good luck for tomorrow. I had my MRI last week as well, no idea when mdt meeting is though and haven’t been assigned a cancer nurse or anything yet so tearing my hair out now.
Let us know how u get on. X

[LCM7]

Hey guys, so I’ve been given stage 3C. It’s a 5cm tumour which has spread to the parametrium and at least 1 lymph node in my pelvis. I have a PET scan booked for 28th to see if there’s any more lymph node involvement as the MRI wasn’t as clear as they’d hoped either. No vaginal, bladder/ureter or rectal involvement it seems though so at least that’s something. Treatment right now is going to be chemo-radiotherapy then they’ll review again after that before deciding if I need surgical treatment. I’m seeing my oncologist on Tuesday to go over dates and durations etc.

It has been a pretty up and down 11 days since getting my MRI results and staging. Me and my partner went away for the weekend and just had so much fun and laughed the full time away. But then it was back home to reality and to physical and emotional pain and fatigue. Because we don’t have any children we’ve had to have the horrible conversations about fertility and whether we wanted to go ahead with egg retrieval. Life is just seeming very unfair at the minute and getting me really down.

[Nw56natalie]

LCM7 - just wanted to send you a big hug x

[LCM7]

Thank you @Nw56natalie x