Any advice would be greatly appreciated

Hi OceanDrive how you are feeling is completely normal and how we all feel no matter what type of cancer scare we are having investigated.  The waiting part is absolute torture and the worst thing about the whole process.  Even finding out you have cancer isn't as bad as the wait for a lot of us.

Unfortunately all you can do is try and keep as busy and distracted as possible.  Also continue to keep an eye on the size of the lump and any further changes.  It seems like you will be able to feel it for yourself if it grows significantly in that wait period and if it does go back to your Gp as that might make them bump you up the wait list.

The only way they can tell if the lump you have is benign or not is to do more tests.  With breast cancer one of the tests is a biopsy to remove a sample of the area and check it for cancer.  I would imagine they would do simillar for any suspected cancer so given they haven't said anything to you about taking a biopsy it probably means they are not particulary worried about it at this point in time and just need to keep an eye on it.

I'm sorry you are going through this.  Wishing you all the best and really hope it turns out to be nothing to worry about.

Hi GodWillingthank you for taking time out of your day to offer me some advice. Yes I think you’ve hit the nail on the head there, the waiting is definitely really hard to deal with and I need to try and keep myself occupied. I certainly know I feel mentally worse when I just sit around and get sucked into Dr Google, yet still I find myself doing it so I need to make a conscious effort to not do that. 

I think I’ve become so hyper vigilant to any sign of the lump changing or growing that it has completely consumed me. I’m literally checking it multiple times per day to ensure I don’t miss anything. The fact you said if the lump grows ‘significantly’ highlights to me that I am probably over-checking and that I don’t need to be monitoring it as obsessively as I have been! 

Part of me is relieved that they haven’t immediately looked at the scan and thought ‘this is likely cancer, we need a biopsy to confirm’. However, the other part of me is terrified that because they haven’t given me a firm diagnosis that something is being potentially missed or misdiagnosed due to how rare sarcoma is, and that the delay until my next scan could be the difference between treatable and untreatable. I know I need to put my trust in the doctors but fear definitely wreaks havoc on your ability to think rationally! 

I had been a bit nervous about posting on here when I haven’t actually got a cancer diagnosis as I felt some guilt that I was asking advice from people who are actually dealing with this devastating disease. So, I just want to say thank you so much for your kind words and making me feel welcome here. I truly appreciate it. I’ve read your bio and am absolutely delighted to hear that you will be cancer free after treatment! Sending love your way x

Hi OceanDrive, so sorry you’ve found your way here. Lumps are common but rarely sarcoma. Unfortunately most GPs will have had little to do with sarcoma, so it might help if you explained how stressed the uncertainty was making you and also explain that you have read the Sarcoma UK diagnostic toolkit for GPs (https://sarcoma.org.uk/file/2921/download?token=pWKRObVT) and that some of your symptoms match what is in that document, hence your concerns. Specifically mention the advice in the document: “Refer for urgent appointment (within 2 weeks) to a sarcoma specialist centre if scan suggests soft tissue sarcoma or if findings are uncertain and clinical concern remains” 
If you get fobbed off, ask for an assurance that the lump is definitely not sarcoma. If you can’t get that assurance you need to ask for another opinion. As GodWilling points out above, further tests are the only way to be sure what the lump actually is. But please don’t wait for 12 weeks. Good luck. 

Hi Shackleton, i appreciate your advice and well wishes. Thank you so much for sending me the link to the diagnostic toolkit for GP’s. I haven’t seen that before and it has really helped me to find a few things out. I’m not sure whether I’m allowed to name hospitals or specifics on here so I’ll keep it vague. From looking at the link I can see that the hospital I had my ultrasound scan at is one of the specialist sarcoma centres! I’ve looked at my report from my scan and the sonographer said she discussed the images with a musculoskeletal radiographer. I’ve searched the radiographer’s name on the hospital website and his name comes up as part of the sarcoma team. I’m assuming that must be a really positive sign, or at least I’m hoping so? Obviously being part of a sarcoma team will mean he knows what he is looking for and hopefully he wouldn’t have sent me away for 12 weeks if he had any concern it was sarcoma? I do feel a bit better now knowing he is from the sarcoma team. I just wish he’d been able to give me a firm diagnosis because without it your mind jumps to worst case scenario! I kind of don’t know what to do now though - do I just wait for the 12 week rescan since he is part of the sarcoma team or do I still go back to the GP and push to be seen quicker since no definite diagnosis was given? I’d love to hear your opinion on what you would do in this situation, but no pressure! 

Hi OceanDrive, it’s a huge relief that you were referred to a sarcoma specialist centre for the ultrasound, you’re on the right track. And you’re also right that you wouldn’t have been sent away for 12 weeks if there was any suspicion that your lump was a sarcoma. It sounds as if the second ultrasound is a “belts and braces” approach. Don’t forget that the vast majority of lumps and bumps are nothing to worry about - it is highly unlikely that your lump is a sarcoma. However, you are in the best position to notice any change in your lump and you need to keep monitoring it ahead of your next scan. If you see (feel) any change in the lump, or notice any increase in size, you need to contact your GP. Ultimately a diagnosis can be arrived at very quickly by a biopsy if there are any sinister changes. I’m afraid the waiting for appointments and results is a pretty awful experience but there are very few shortcuts. You have my sympathy! 
Good luck and please let us know how things go. 

An update - I managed to get an earlier ultrasound last Friday and I got a phone call from the GP today saying the ultrasound shows the lesion is about 1cm wider than the previous ultrasound. Because of this he said he is referring me to the sarcoma clinic on a 2 week referral where he thinks the next step is likely to be an MRI. Part of me is relieved to be getting closer to getting a definitive diagnosis one way or another. The other part of me is obviously terrified that it has shown signs of getting bigger. I’ve read that sarcoma is quite fast growing so I’m just trying to reassure myself that 1cm doesn’t sound like a large amount of growth in 7 weeks so the chances are unlikely it is sarcoma but I have no idea if that is true or not! 

So I’ve had a call from the hospital this morning to go in for an appointment tomorrow morning to see the consultant and have an ultrasound with biopsy. Feeling quite anxious now! 

Hi OceanDrive, good luck tomorrow! It would be unnatural if you weren’t anxious! Well done for accelerating the process. I’m afraid it’s always awful having to wait for the next appointment, next set of results etc. but the good news is that you have got things moving and have a clear way forwards, which is infinitely better than the uncertainty that you have been going through.  

Good luck, hang in there and let us know how it goes when you can. 

Thank you for your well wishes Shackleton. Much appreciated!

I’ve had my biopsy. Never had a needle in my bum before so that was a new experience. Both the consultant and the radiographer said they weren’t overly concerned and that appearances overall point more to it being benign. They said it could be a lipoma that has been traumatised, but since traumatic fat can mimic cancer on an ultrasound then a biopsy is needed to tell us exactly what it is and to make sure nothing will be missed. I have an appointment with the consultant next Friday to go over my results and next steps. 

I feel mentally drained after everything but I’m cautiously optimistic for the results. I hope I’m not jinxing anything by saying that! I know there is still a chance of it being cancer as biopsy is the only way to know for sure what the lump is but when sarcoma experts are saying they are not overly concerned then it does relieve a little of the worry! I’m going to try and put it out of my mind for the next week though and hope for good news when I go back. 

Things sound positive for you. I hope you get good news very soon.

I went to see my consultant on Tuesday regarding the CT scans I had two weeks ago. Although I was getting more anxious waiting I thought it would be clear and I wouldn't have to go again for another two and a half months for the next scans. Unfortunately there was an area which didn't look normal but they are hoping it's scar tissue. I now have to go for an MRI on the 17th November and see my consultant on the 30th November. I want to get off this nightmare roundabout!