Dear Snugglecat,

I’m sorry you’ve had such a negative experience with both your GP and at the hospital. I’ve been lucky enough to have been treated with real empathy and kindness by everyone that I’ve encountered, and I know it makes such a difference.

I was like you- absolutely terrified about the results, but actually knowing (I now have a diagnosis) is better than the worrying about what might be. I have a lump that neither my GP nor I could feel, so mine was a shock to me, as yours is. 

I really hope you get some good news on Wednesday, but if the news is not so good, you will at least find out how what the treatment plan is, and you will be able to look foreword rather than constantly worrying about how bad it might be. Keep checking in here- you will get lots of support and we all have different experiences, but the chances are that someone will be in exactly the same position as you.

Good luck for Wednesday- try to keep yourself busy and distracted by something else in the meantime. Xx

Thank you for your kind words.

I received a diagnosis today....the worst.

I've been diagnosed with inflammatory breast cancer, the rarest and worst type and fastest growing cancer. Apparently it can develop in days and weeks. My symptom (dull whole breast pain) started only a matter of weeks before I visited my GP. I didn't have any of the classic symptoms at that time.

I'm waiting for an urgent  CT scan to identify if it's spread to other parts of my body. The ultra sound scan last week showed it doesn't appear to have spread to my lymph nodes yet but I'm told this needs to be confirmed by the CT scan. 

It's impossible to develope a treatment plan at the moment but I was told if it hasn't spread it is likely to consist of chemotherapy with additional medication to help stop it spreading followed by a mastectomy then radiotherapy and all this will take approximately one year to complete. Reconstruction surgery may follow at a later date. 

I've been assigned a cancer nurse called Lucy who I met today and have an appointment with tomorrow morning to recap what the consultant said today and provide a further opportunity for me to ask questions. She seems nice. The consultant I spoke to today was lovely but I fear she wasn't telling me the full story.

I'm in a state of disbelief due to the rapid development of the disease and lack of initial symptoms except for pain. The only way I'm dealing with this just now is to pretend it isn't happening to me. My husband is devastated and so are the two friends who I've told. 

Other than the constant breast pain I feel fine just a bit tired but I also have Rhematoid Arthritis so the tiredness is likely due to that so I'm choosing not to tell my daughters still or anyone else until I know the prognosis and  treatment plan. No point in worrying anyone else and I don't want them treating me differently and fear they might if they know.

My younger daughter is busy planning for the arrival of my first grandchild and I found it hard to hold myself together when she talked about the things we'll be able to do together in the future earlier this evening.

Although I was expecting a cancer diagnosis I could never have imagined a few weeks ago how much my world was about to be turned upside down. Outwardly I'm presenting as positive and coping but inside I feel angry and potentially cheated out of a life that I thought I would have for many years to come.

Hi,

Thank for your kind reply. I'm so grateful someone such as you who has a better understanding of my situation is out there to listen to me and provide an encouraging response.

I went to see my nurse this morning accompanied by my husband. I thought it was going to be a waste of time but she was wonderful and kind and listened to my fears. She went over everything that was said the previous day at my consultant appointment but in greater detail explaining how treatments would or could be given if appropriate and their side effects and timescales. 

She informed me about the services local neighbourhood chaities provide to support with transport to and from appointments should I need it and provision of wigs and beauty treatments etcetera available free at my local hospital. 

I listened intently and asked lots of questions. There was so much to take in. We ended up talking for two hours or more. 

She put a positive vibe on the treatment providing a cure, this of course depends on the results of my CT scan, and we briefly discussed my thoughts about treatment if the results show the cancer has spread. I hardly dare contemplate that scenario.

We laughed together and I cried a lot. She was much more positive about my future than I dared to be. Due to me living close to the hospital and currently being on a career break she recommended I contact the CT Scanning Service to inform them I'm available to attend at very short notice should they get a cancellation to speed up the process and enable treatment to start sooner as able despite my referral being classed as urgent anyway. I left my appointment feeling far more knowledgeable and comforted than I arrived. More importantly it provided my husband with a clearer insight about what lies ahead and why we need to change or delay our plans.

When home I phoned the CT Unit who very disappointingly hadn't received my referral so I phoned my nurse who agreed to sort it out and told me to phone them tomorrow, which I intend doing. 

The unknown is torturous and the sooner I receive my results the sooner I can start telling people about my illness but I intend holding off until I really have to.

Today has been like being on a rollercoaster ride. One minute I've felt very positive, the next crying my eyes out and struggling to hide my sorrow from my husband. More baby talk with my daughter this evening hasn't helped.

I'm usually such a positive person who just gets on with life but all this is beyond my control and comprehension and the pain in my breast is excrutiating at times making me feel much worse despite me looking really well.

All my plans and aspirations are on hold and even if feasible to do, the treatment is going to be so long and drawn out. And not wanting to appear vain, I find the thought of losing my beautiful long shiny hair and eye lashes really daunting having never seen myself bald before but know it will be more than worth it if it saves my life. Luckily I'll still have eyebrows because they're tattooed on. 

I'm meeting the two friends I've told already for a meal tomorrow teatime and looking forward to that but I'm sure there'll be lots of tears from all of us. That will provide my husband with an opportunity to meet his friends and escape this awful situation we've found ourselves in without him feeling guilty about leaving me on my own which he does when he goes out to work. 

As soon as I get my scan results and have a treatment plan I'll provide an update and hopefully look forward to hearing from you again. 

Please accept my grateful regards for your support.xx

Hi Snugglecat,

I’m really pleased that your appointment with the nurse was useful, and that she was lovely and supportive. It makes such a difference as they have the time to be able to explain everything and answer your questions.

It was a surprised to hear how many different services are available to us, free. Definitely make use of what they have to offer- it might make quite a difference to the months ahead. 

I hope you’ve had some success in getting an appointment for your CT scan. You’re absolutely right about the waiting for results etc- it’s horrible, and your mind runs riot in the meantime, wondering what’s going to happen. A diagnosis can be really hard to take, but the unknown usually feels so much worse, 

Regarding your hair and potentially losing it as a result of chemo, it would be strange if you didn’t fear it. Our hair is such a big part of our appearance, so it’s very difficult to contemplate being without it. I’m currently in a very lucky position, as it appears that I won’t need chemo, however before I knew this, I started to do some internet research about wigs. I think you may be surprised at the variety and quality of those available- I’d already picked one out that looked very much like my own hair. I have friends who have lost their hair due to chemo, who just went with it, and wore other head coverings when they went out, but otherwise nothing. 

I hope you had a pleasant time with your friends this afternoon- it must have been a real mixture of emotions I would imagine. I’m sure they will be a big source of support for you, You will also be surprised at how supportive everyone else will also be once you tell them. I’ve had to tell a lot of people due to my work commitments, and I feel better for it. I didn’t like keeping to have to cancel work due to hospital appointments, but now people know why they are more understanding instead of thinking that I’m unreliable,

I hope you soon get more answers. Keep checking in xx

Hi Lara,

Am I right in thinking you paid private for your care?

If so do you mind answering a few questions about costs, care, etc.

This is something I'm considering since my diagnosis of the very rare and fast progressive inflammatory breast cancer last week and need for quick treatment.

Regards 

Snugglecat.