New here, new to cancer

I want to thank you ALL again... I cannot believe how wonderful this community is! We went to Wrexham yesterday for my PET scan so hopefully they’ll have the results for the team meeting on Monday to settle on a treatment plan. Still in a lot of pain, but just met with the MacMillan nurses who subsequently met with my GP for something other than morphine which was making me really useless, fuzzy, and nauseous ... and doing nothing for the pain. Anyway, the doc agreed and I’ve just been handed Oxycodone and lidocaine cream… fingers crossed!!! I hate feeling this way ️

That’s great news, once you have a plan you will feel more in control and I really hope the medication works xx

This is another step forward Wavedancer , hopefully not long now before you have a treatment plan in place. I’m also pleased that you’ve been offered some alternative pain medication, I hope it proves more effective than the morphine. 

Nicola

Hi Wavedancer,

A bit late but like the others want to say a big welcome to the forum. I’m sorry to hear of your diagnosis and your surgeon’s words must have left you in shock and reeling.  I’m so glad you have found this forum though as such a wealth of sound advice and support from lovely wise people who have gone through, going through or like you about to start treatment.

 I finished chemo radiation in November but well remember the awful months pre diagnosis and then the shock of diagnosis and waiting for a plan. It’s a frightening time.

 I am so glad that you have been able to obtain some alternative pain relief and really hope that it gives you some respite. Sounds like you have been really suffering.

 I can see that the other forum members have given great advice. Don’t hesitate to reach out about absolutely anything or just to vent. 

I hope you get your plan very soon.

Big hug xx

I found when I was being diagnosed that the attitude of staff could really lift or deflate me even though the diagnosis and treatment were the same.  I got through by repeatedly telling myself it was simply a tumour which I was going to be having treatment for. Tried not to go down the rabbit hole as I knew the mindf*** that would be!

I bought one that used this photo, but it's really hard... not memory foam at all. Unfortunately, I'll have to return it.

UPDATE: I finally met with my oncologist 2 days ago, and we have a plan. 28 days (6 weeks) of Radiotherapy bookended with Chemo. The MacMillan nurses have been brilliant (and FAST!) trying to sort my pain. The PET scan also lit up two areas in my breasts, so I had an ultrasound and four biopsies taken yesterday. I'm praying it's not a recurrence of the cancer I had 40 years ago, but they are thinking it may just be pockets of silicone my body has been fighting since a rupture and those implants removed 20 years ago. Fingers crossed, that's all that's going on there. I'm now on 20mg Long-release Oxycodone morning and night with 7.5mg Oxy liquid breakthrough 2-4 hourly. We're going to try something for nerve pain over the weekend, though, as the tumour is protruding and is essentially an open wound. I'm praying that "normal" will come again, but meanwhile, I sit and write and think about all the things that I don't have the energy to do... but WILL DO someday!

Hello Wavedancer.

I’ve just been reading through your post. So happy to hear you have a plan at last - also very sorry to read that you’ve been in such dreadful pain and fingers crossed that what you’ll try over the weekend will give relief. Hoping the scare in the breast area will be the silicone.

When I was waiting for my very recent diagnosis (and it was an extremely long wait of over 4 years!) since I found a tiny pea sized lump which they told me wouldn’t change - but now is sadly well over 4cm, they also found ‘lit-up’ lymphs nearby in my abdomen. That was a shock. I too had breast cancer 25 years ago and luckily had my implant replaced only a few months ago - at least it didn’t rupture in the middle of this cancer treatment!

I’ll be starting my Chemoradiothereapy on Tuesday for 5 wks, followed by a break, then Chemotherapy in 4 cycles to bring me up to Sept - as far as I know. Perhaps surgery afterwards. The lump is midway up in my rectovaginal septum and has become more prominent under my cervix. Because it was so tiny in 2020, it’s only now this past year that I am beginning to experience some pain. I wish they’d taken me seriously all 3 times I approached the hospital since then … 2021, 2023, 2024. After a PET scan, then biopsy in Jan, I was only diagnosed Feb 2025.

This forum is wonderful. It inspires positivity! Take care & sending you many hugs. x

Oh my dear, I am so sorry you have been in limbo for so very long! How horrible for you! I think because I can be pretty proactive (aka bitch) that things moved a bit quicker for me... that along with the fact that one of my GPs misdiagnosed it as haemorrhoids last summer, and he's feeling a bit guilty, so now nothing is too much to ask of him.

We'll be in this together, you and I, timing-wise... please stay in touch

Yes Wavedancer (btw your name is beautiful - it makes me want to paint a picture!) I see your biopsy was just a week after mine on 23rd Jan.

Limbo is a horrid landscape. Through all this nightmare I have thought of myself as proactive - I wouldn’t let it go - and one consultant even told me I was imagining it! I even went privately to colorectal too and was bounced back into the NHS but the CT scan and Colonoscopy showed nothing untoward. I also went privately to a Gynae but in retrospect he gave what i now know wouldn’ve been a disastrously wrong diagnosis (that the lump was vascular).

Someone in 2021 had diagnosed it as a calcified deposit - a phlebolith - and everyone else ran with that until late last year. I was refused a biopsy twice by Gynae. I am mystified as to how that septum, which divides the vagina from the rectum can be so much of a dilemma between two hospital departments! They yo-yo’ed me between them and the colorectal department just didn’t want to know about me and ended up being rude and dismissive. Now they're hugely apologetic that I have ‘rectal cancer’ - in my vagina! 

It was only when a medic colleague listening to my husband relating the story at his work, suggested I ask for a PET scan that I asked Gynae for one and they eventually did it in December. I also discovered that A PET had been suggested by the MRI radiographer way back in 2020 - but never performed!  And I can count at least 6 blatant mistakes over those intervening 4 years.

It has been so stressful and I only started to sleep properly when I was diagnosed this year. Sounds crazy I know, but I was so relieved to know after all that time. But because I wasn’t in pain all this time, and it was so small, for so long, they thought little of it. 

We’ll get through this. Do let’s stay in touch x