Awaiting ultrasound guided biopsy on possible rare knee cancer

hi

welcome to the online community, sorry you've had to come and find us

I'm not sure where to point you for the knee but the breast group is, unfortunately, pretty busy, you can hang out there and chat to a few people.

I just thought I'd say hi.  I had breast cancer in 2015. 

I need to pop out now but if you reply here I will see it.

hugs

Carolyn

xxx

Hello carolyn28

Thankyou so much for reading my first post and replying. I really appreciate it.i shall definitely find my way over to the breast group.i was quite taken back by the on call gp.she asked me how often I breast checked,I said every month after period.she said that was far too much and once every 6 months was sufficient,she said as the lumps were so small they wouldnt be able to get anything off them anyway so I needed to wait for them to grow. This really doesn't sit right with me,although I would like to think I would have to be pretty unlucky to have 2 different types of cancer at once if my knee is a sarcoma. I think it's the not knowing that doesn't help. I have anxiety which I tend to play down to the gp as they like to say everything is anxiety but at least with the knee and the breast lumps I know they are real,not in my mind. My mind wants to at night take me on a dark path of thinking I'm full of cancer.i had lots of blood tests back 6 weeks ago around the time of my colonoscopy(I lost a stone in such a short time)and I had a blood film as well.all these came back normal.i feel I need to go see the gp again,but my surgery is so short on time it's like what do I talk about.my hip pain I'm getting on waking,my back pain im getting on the same side which wakes me nightly as well,the essential tremors that only appeared recently and I have no follow up from that or the lumps in my breast which are still there but harder to feel(I have managed to put  a few pounds on so I'm guessing more breast tissue as they feel deeper but not smaller) I feel a bit of a twit going up to the gp with all this wrong after 38 years of being fine

Anyway thankyou for listening to me waffle on.i dont have anywhere I can be completely honest about how I'm feeling and fearing x

hi

I'm back   ? 

did you find the breast group? 

here's a link if not

https://community.macmillan.org.uk/cancer_types/breast-cancer/

Chaos, confusion and uncertainty, are at the root of all madness. We drive ourselves a bit bonkers with the 'what ifs'.

It's also that feeling of being a pest when in actual fact the government encourages us to get things checked quickly as everything is much more treatable when found early.

I was fine for years and then had to visit the GP, A&E, the eye clinic Moorfields A&E and an optometrist in the space of a few weeks as my eye had flared up. We never ever got to the bottom of what it was. In all seriousness the eye doc said 'could be a virus' which I found quite funny as I'd seen a meme about it, when doctors have no clue they say it might be a virus, therefore virus is latin for I haven't got a clue. 

The weird thing was none of the male doctors could see the problem, yet all of the females could, that was until I took a pic of it, then they saw it. One even offered eye surgery, a nip tuck, just to appease me.  In the end I got some ointment in Spain and it kept the symptoms at bay.

There's a lot of us the medical world knows very little about. Frankly, in my humble opinion, we're not designed to 'work out' on exercise machines and I'd have thought a repetitive strain injury of some type was more likely on your knee. Obviously the risk when we were hunter gatherers was more to do with being eaten or mauled so I'm not advocating that. I try to walk 6000 steps per day, most days I fail dismally. I also try to work out my top half to keep things mobile and supple. The weather is making a gym much more attractive but steel isn't as forgiving as grass. I'd tried a stepping machine but suddenly one day couldn't get up off the chair because of a back spasm, I stopped with the stepping machine and the problem cleared up.

I had a rocky road to diagnosis so I'm not going to try and calm you down completely, but try and keep it reasonable and do be persistent.

In 2012 I was called for my first routine mammogram and it was just reported as 'clear'. Then during 2013 and 2014 I just didn't feel right. My breasts have always been dense and lumpy, nothing felt any different. I had that eye problem. I also had a thorough gynae exam and colonoscopy.  All clear.  Then I saw a spot on my arm and thought 'cancer', I have no idea why I thought that, it was just a small blister type spot but after that I decided to call to get an appointment as it was almost 3 years since the mammogram. That took weeks for me to get around to it but the referral letter was dated 13th March and I didn't actually see anyone until May. 

There is a theory that we all have potentially cancerous cells but mostly our body deals with them and it's not actually a problem until they reach a certain density or form tumours. That would account for the fact I seemed to have whole body symptoms and yet the team said my cancer was contained in my breast. I'm still here, almost at the five year mark, but I've been told that unless I have specific symptoms they won't investigate further. Friends from Europe think our follow up care is poor and I'm inclined to agree.

The circulating tumour cells test or liquid biopsy technology is available but not in the UK, yet, it's being trialled. Greece has it. That tells us whether cancer cells are present and in what quantities but what, if any, treatment will be offered will depend on what type of cells they are. 

Our standard diagnostic tests aren't very good at tiny anomaly's so there may well be a bit of watching and waiting, I inadvertently waited 3 years. Our treatment plans also don't activate until we're sure what we're treating and the risks versus the benefits are weighed up. 

What are you going to do to avoid fretting whilst you wait? I suppose you could do your arms in the gym? Box sets? Bake off practice?

Allow yourself a small amount of time each day to ponder and chase for tests and results  but then focus on work or family or hobbies. 

I use this forum as my 'pondering time' as I do feel it helps to share the load and unburden ourselves, only those who've faced it know what it really feels like. 

hugs

Carolyn

xx

Hi carolyn28

Thankyou for your message.i never even knew about the tests other countries have,but what you have said echoes 2 of my friends who had bowel cancer,the after tests to see if it's back they say it doesn't feel enough,blood tests dont always show cancer,and their diagnosis took ages..why?..because both were under 30 and in their gp words were:your too young to have bowel cancer".both also say it takes longer than it should to diagnose but once diagnosed then it moves quicker

I'm trying to stay distracted by watching telly(found a new series called limetown on fb)reading and drawing. It is very hard to stop myself being pulled down the dark rabbit hole and staying there, anxiety and what ifs rot your brain,the what if its cancer,what if its spread.i know I'm not the only person thinking this,and I know that worrying wont change the outcome but it's hard.i know the gp has to be honest,but when he said 2 radiologist have no idea what this lump is in your knee and it's either benign or a rare cancer that scared me,because if it's rare then that would explain why both didnt know what it was.

Your story has touched me,I take my hat off to you and how brave you are and appreciate you telling me your story and for making time to tell it.i felt a bit of a fraud coming here posting my fears and what's happening as I am not diagnosed and hopefully I wont be but you have made me feel very welcome

Massive hugs to you 

Jo

Hi carolyn28 

I just wanted to let you know I have my ultrasound guided biopsy on fri afternoon,so they have pushed me through pretty quick !. In ok...ish,the allowing myself 10 mins to ponder and panic actually helps!. I just feel so tired and I have odd aches and pains,I'm trying to think it's not connected but we will see. I need to go back to the gp as I'm taking zapain for the pains and need more meds. Plus I still have the breast lump so I need to push and see a diff doctor about that

I hope your doing ok and I will keep this post updated 

Hugs jo

Hi,

I had my biopsy yesterday. 1 specialist 1 radiologist and 1 nurse. The mass is now 2cm so is growing and fully solid.its growing they are pretty sure on my sciatic nerve. We got 3 samples and I will know the results within 7 to 10 days. This is causing pain in the back of my leg and wear and tear at the front is causing the kneecap pain. Regardless of the results it has to be removed and I will update here as soon as I know

Hope your doing ok :) 

hi

there's no easy way through this, you have to have the tests, then you have to wait for the results 

I haven't drawn anything for ages, I remember when the kids were small I used to treat myself and the kids would presume the drawing pads and pencils were for them, get quite excited and I couldn't bring myself to disappoint them.

Funnily enough, when I was going through all this back in 2015, they got me a colouring book.

Did they discuss the procedure for removing the lump?

Carolyn

xx

Hi carolyn28 

The specialist said that depending on whether it was malignant or benign would determine how they will go about removing it, I'm assuming that means if its nasty it needs clear margins etc? I can only go by what my vet said when my dog had a mast cell tumor in his back right leg(uncanny now I have a lump in the back of my left leg)

I shall speak to my gp over the wewr and tear in the knee cap,at least now I know what's causing the front of my knee pain and stiffness and what's causing the sciatica pain in the back

I love to colour,it really calms me,my kids are 14 and 12 and they tend to borrow my pencils but they do give them back...sometimes ...

Jo

Hi carolyn28 

Just wanted to let you know what's happening. 1st biopsy inconclusive,2nd came back today as a very rare sarcoma cancer

I see the surgeon next fri. I'm terrified but feel better now I know what is happening 

Hope your ok