my story so far

Hello
On the 18th of May I found noticed that my left breast felt much firmer than my right breast. For about a month prior to this I had been experiencing shooting pains in the left breast but on checking nothing out of the ordinary was felt. When I got home I checked myself out, including looking at my breast in a mirror. When I held my left arm up I could see a dent/crease in the breast below the nipple. I immediately made an appointment at the doctors who said that she could feel the “firmness” - and she referred me to the breast clinic. Two days later I got the call from the hospital with a date. 26th of May, went to the clinic with my husband in tow. I asked him to wait outside because I was so sure it was nothing to be concerned about. The consultant did the examination, said he could feel something in my armpit aswell, then brought in an ultrasound machine and used that, printing off 4 images in total. Then he spoke to me, showed me the dark areas on the images and explained that I was looking at cancer. At this point I asked them to bring my husband in. The rest is a bit of a blur, they wanted me in as soon as possible for a biopsy but we were looking at a bank holiday weekend. They booked me in for a mammogram on Tuesday 31st May followed by core biopsy. Mammogram was painful but the biopsy was worse, they took three samples out of the breast using a biopsy gun, they then did a fine needle aspiration of my armpit. Then I went home. I was black and blue (still am)

This was just the start - I have felt like I am on a roller coaster but it just seems to be plummeting down very fast with no sign of an up ahead. The biopsy came back and the news was that I have an invasive lobular carcinoma. The fine needle aspiration of the armpit revealed nothing so I had to be booked in for a SNB (sentinel node biopsy) which was done just over a week ago under general anaesthetic. Results of that came back yesterday, out of 5 nodes removed all 5 tested positive. This week I had a full body bone scan on Monday and then CT scan of chest abdomen and Pelvis yesterday. I have heart scan booked for next Tuesday.

I saw the oncologist last Thursday and she talked about me having 8 cycles of chemo 4 x EC and 1 x something else (can’t remember), then a mastectomy and then rads. She said I was looking at a year of treatment.

I am petrified - all the news that has come back so far has been bad bad news. I am in pain from the surgery from last week, black and blue, needle marks on the back of my hands and crease of my arm. I am not sleeping much or eating much.

All I can think is what if it has spread, what if it is in my bones, in my organs. Am I dancing with death.

Is there anyone in here who has had a similar diagnosis to mine so far who has got through this or is going through this? I just need some hope where as at the moment I feel there isn’t much at all.

Soupertrouper, the waiting for results is the pits and if you look at other threads you’ll see that a lot of people consider it the worst time. Once you know what you’re dealing with and have your teatment plan in place it will get easier to cope with. You’ll be angry, confused, sad, snappy but once on the roller coaster you do eventually get to the good bits. I know it’s really really hard but try not do do ‘what if’. Try and see it as a year in your life that is going to be rubbish, but, but, you’re being treated and that’s far far better than the thing not being treated. Don’t google, ask questions, always try and have someone with you to talk things through afterwards as it’s hard to take it all in, and the help line here is brilliant. I’m sure someone in a similar situation to you will be along in a minute to help you.

Hi, Supertrouper and welcome to the forums-you will get loads of support on here. I was roughly where you are now in March last year. I was diagnosed with invasive ductal, multi-focal grade 3 with high grade DCIS plus 4 out of 10 lymph node positive. I agree, the core biopsy was hideous and I too was black & blue. I am also ER,PR neg. and HER pos. I had a left mastectomy in the April, which I recovered from really well, then 8xFEC which wasn’t that pleasant, but not as bad as I thought, manage to feel quite well 2 out of the 3 weeks between treatments.then 15 rounds of raiotherapy which wasn’t too bad. am now having 18 Herceptin ( I have my 10th next week). what I am trying to say is that you will get through what they throw at it and come out the other side. I now have a full head of curly hair (never had that before!!)and feel well most of the time which, I think, is as much as anybody can expect!
I also thought it had spread eveywhere and was so surprised when my scans came back clear that I didn’t believe my BC nurse.
I’m sure more ladies will be along soon

take care

Carol

Thanks for the replies - I have just rung my BCN to see if any results are back and the bone scan result is in. She said it was normal although it showed slight inflammation on right rib cage. Not sure what that means but she said it was a good result. So I am holding onto that thought. She also said it was normal to feel nauseous after the CT scan involving the injection. Will get out and about today and try and bring some normality back whilst I wait for the next results.4 down, 3 to go. Onwards and upwards.

Sending you a hug Supertrouper,
We can all completely understand where your head is, my head was ‘mashed’ mid-march and I too had the ultimate horrid thoughts of spread, terminality - did a lot of crying and snotting everywhere one night and the wait for the scans and results is utterly agonising.

I was quite fortunate that I saw my surgeon before my last scan, he told me he would do the suregery in 4 days time if the last scans were clear and would be the preference of the oncologist too, so I told him that if it was clear I wanted to go ahead with mastectomy first and not have chemo first (as originally planned), because if it wasn’t I’m sure I’d have gone down a different route - but not sure.

Had verbal results 4 hours after scan, with written report the next day so that surgery went ahead, 3 days later - bit of a whirlwind but you can only relax and settle your mind once you have all the info - I felt as if everytime I went for a scan, test or whatever, the goalpost changed and couldn’t keep my head on top of it all. It is much easier now that I have all of the info and I’m a bit further down my journey, but is easier to deal with now 12 weeks on.

I wish you all the best with the scans and the results, try to keep busy (which is easier said than done) and if gets a bit too much, come back on here and share your thoughts

Bev x

Hi supertrouper and welcome to the BCC forums

In addition to the support/information you have here please feel free to call our helpliners where you can talk your concerns through in confidence, the lines are open 9-5 weekdays and 9-2 Sat on 0808 800 6000.

You may find our newly diagnosed resource pack useful too, here’s the link with more information:

breastcancercare.org.uk/healthcare-professionals/publications/diagnosed-with-breast-cancer/*/changeTemplate/PublicationDisplay/publicationId/82/

Take care
Lucy

I posted this reply to another thread, but am repeating it because you may find it helpful.
I think at the heart of this thread, is the question how does someone cope/live with the fear and dread of big C hanging over them. While I don’t have the answer to that, I do believe it is necessary to distinguish between positive fear (i.e, the instinct that alerts us to danger and makes us take action), and negative fear (i.e, fear of the unknown, or things we cannot change, which achieves nothing other than to make us feel helpless and worried). For example, as someone with stage 4 metastatic cancer, I don’t have the fear of the unknown, because I know I have cancer, and therefore don’t have the worry of whether it has gone, or will come back. Neither do I fear the fact that I have the big D hanging over me, because it’s something I cannot change (and lets face it, every human being has to live with the knowledge that they will die at some stage). Obviously, like everyone else, I would like to live for as long as possible - and that means having the best medical treatment. Unfortunately, the simple fact is that the treatment for metastatic cancer in Britain is very mixed, but as it’s something I can influence, I think fear is a positive response.
Sorry to waffle on, but hope this may help a little, to sort through your emotions.

Hi Supertrouper

I’m one year on! and planning to go back to work in two weeks…

I was diagnosed June last year, had chemo first (4 EC then 4 Taxotere), surgery then rads - and yes it is a long slow road but do-able.

Take each day as it comes, find someone to share with or start a new thread for people at your stage and you will be able to travel the road together and hold cyber hands, where you can share laughter, tips and tears. Positive thinking works - and stay away from google. Ask whatever questions you want, no matter how ‘trivial’ they may seem - they’ll always be someone somewhere who’s been there before.

Save your post or favourite threads into your profile under saved discussions and that way you can go straight to them when you log in; saves time sifting through later on.

I wish you well, and as you say onwards and upwards - keep posting, talking and sharing!

Dee x

Thanks everyone - I now have the date for the start of Chemo June 27th. Going to go take a look at the starting chemo in June thread so see whats what. Felt a bit better today as I could drive. Not supposed to for another couple of days but my car is easy to drive and I didn’t go far. How naughty of me!

Hi Supertrouper,

Can empathise with so much of what you have said. I was diagnosed with DCIS and an invasive cancer in my left breast with axillary node involvement last Thursday after my first routine mammo, call back, biopsies etc. I’m down for MX and clearance on 5th July. Have CT and bone scan this Friday, so dependant on what they find I may or may not need the works - chemo etc.

Like you, I find my mind runs away with itself; every ache that I feel in my muscles or bones means the cancer has spread - those kind of thoughts. I find myself ignoring the whole left side of my body and I can’t bear to touch my breast or under my arm - like if I disturb it, it will make it worse. (Reading that, I can see how crazy that sounds!)

I find that reading other posts on this site from women who are further down the line, whether their situation is good or not so good, is enormously encouraging.

Lemongrove, I found your post really helpful and that, along with others has given me a sense of perspective on my own situation.

I will die at some point in my life but I’m not going to die from cancer tomorrow.

Hang on in there. Use the incredible knowledge and support that is available in these forums, from your family, friends, healthcare professionals etc. Don’t suffer in silence.

Good luck with the rest of your results.

Laurie x

Hiya Supertrouper,
Your story and timings are all about the same as mine , I have invasive lobulat with a 10cm tumour. I am getting 6 rounds of fec then mastectomy and rads. I am due the next chemo next week . My scans all came back clear. its a sneaky cancer that seems to just appear !! I got a clear mammogram and scan 14 months ago . i am 45 .
I felt just the same as you , but reading all the supportive post on here and speaking to friends and family has helped me. I am a stubborn bitch and i refuse to let this commpletely change my life. I am at work this week and the routine that i am familiar with has really gave me a boost . I even came in last night and gave myself a number 2 with the clippers and it felt quite liberating !!! If you take control before the cancer makes you do things as you have no option it hemotionally is normal, i have felt every emotion and cried buckets at times. This sight is proof that it is possible to beat this …AND WE WILL !!!
You take care and keep talking

Lorna x

Thanks everyone, I do feel much better tonight after reading all your lovely responses to my post. I know I am not alone and I am determined to become one of the Kick Ass bitches determined to beat this. I liked someone’s story where she said she stopped being a sad frightened person attached to cancer and became this strong person determined to beat the C**p out of it.

CT scan results are back and normal! Good news.

Hair gets cut much shorter at the weekend. Wig has been picked. Scarves and caps at the ready. Chemo starts on Monday. I am as ready as I will ever be.

Fortnight in Spain got swapped for a weekend in Dorset with my brother and his wife. I have a very supportive OH and family. In some respects I am very very lucky.

Absolutely fab news supertrouper you must be so relieved and the very best of luck with the chemo part of your journey, the May and June chemo thread ladies are very supportive and help to keep my sanity in check most days and some are only just a bit ahead of you and can support you with ups and downs, pushes and pulls, ins and outs, prods and pokes etc
Bev x

Hi, Spoupertrooper, really good news re the scans-onward and upward!!!

Carol x

Dear Supertrouper

I just wanted to say “hello” and to offer you my support. It may help you to know I had invasive lobular breast cancer with 15 positive lymph nodes. The positive lymph node situation still upsets me because I was four years misdiagnosed and I could have been diagnosed so much earlier. I don’t think I need to mention how I felt and to what my thoughts were like at the time. I lost the whole of 2005 - I think my treatment plan was much the same as yours. However, I am still here and doing very well. Life is good. You will conquer. Although the tunnel seems long and dark at the moment, light will appear and you will get through to the other end. Try to take one day at a time and don’t be too sore on yourself. Pamper yourself - you are No. 1.

Wishing you well with your treatment.

Jeannie