Hi
I’ve been lurking for a week or so.
I’ve been diagnosed with a cancerous tumour (high grade).
At the start of March I noticed a lump protruding from my inner thigh. My friend, a physio and my husband felt it and agreed if felt odd. However I do strength training and a few days before had done a particular heavy class so assumed it was a muscle injury. However I contacted the GP and they deemed it non urgent and I had to make an appointment. I was due to go skiing a few days later so had the appointment when I got back. The lump was painless and skied fine. I saw a nurse practitioner who agreed it was likely muscle or a haematoma but referred me for an ultrasound . I waited three weeks for this (seems she didn’t put me on the 2 week pathway). Ultrasound detected a mass and I had an MRI a few days later . Two days after the MRI had a call from a specialist sarcoma nurse who asked me to go in. I saw them and a plastics consultant who specialised in sarcoma and they explained it was highly suspicious. The mass was 9.5cm and is in my sartorius muscle injury hm leg. Said I would definitely need surgery and very likely radiotherapy to shrink it. He said he would likely remove the muscle too as actually you can manage without it. I had a biopsy 2 weeks ago and on Friday when I expected to get the official diagnosis all they have been able to tell me is it’s a high grade tumour and have ruled out melanoma and carcinoma but are still waiting for the sarcoma results . Thing is she then mentioned blood cancer too (or the ruling out of it). I literally collapsed to the floor at this. I had started to get my head around sarcoma - the treatment (radiotherapy and surgery) and at no point have they mentioned they are ruling out other cancers. I know logically that makes sense but I felt sure they thought it was sarcoma .
I now have to wait until next Friday when they report on the biopsy results again and have the wider MDT meeting. I have no other symptoms and am physically well but of course Google has told me that in rare cases blood cancer can be a mass like a tumour. The nurse said if it’s comes back as sarcoma I will probably start treatment the week after. I’m just so lost.
I’m an absolute mess . I’m a mum and wife and lead a very active wife. My boys are only 13 and 11 . My head is spiralling all the time and I can’t think of anything but the worse possible scenario. I have an incredible support network around me ; my husband , friends and family but this is consuming me . I’m absolutely terrified and even looking at my boys and husband makes me fill up. I don’t know how I can do this.
I’m living in a nightmare and right now I don’t know what to do.
please any words of wisdom of advice as I fear I’m going to make myself ill.
Hi Butterflycake and a very warm welcome to the Macmillan Community but I am so sorry to hear about your ongoing diagnosis.
I know from experience having been on my cancer journey for 26 years…… actually 26 years to the with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable)….. blood cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot be it patients or family members.
There is a significant difference between sarcoma and blood cancers. Blood cancers alone have a number of different types with Lymphoma alone having 60 different types.
The main diagnostic tool for many types of blood cancer is biopsy especially in Lymphoma……so let’s look for you to get a clear answer soon.
The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms)………… so once you have a clear diagnosis you can have a look through this link Cancer Specific Groups where you will find all our dedicated cancer support groups listed.
These groups are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from members who are navigating the exact same journey.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you want to chat more.
….. I will add in way of some encouragement……
I was diagnosed in 1999 age 43 with my first type of NHL when our daughters were 14 and 18……. but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 back in Nov last year and I am coming up to 10.5 years since my last treatment.
I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done ((hugs))
Blood cancers can often be diagnosed on the back of investigations looking at other medical issues….. especially if there are unexplained growth areas.
As much as it would be logical that blood cancers would show up in a blood test…. but for say Lymphomas….. they just don’t show up…… only a biopsy can diagnose.
In Non Hodgkin’s Lymphomas (NHLs) there are slow growing Low-Grade NHLs and fast growing High-Grade NHLs…… I have had both and both were very treatable.
Lets look for answer soon.
