My story - so far!

Hi there,

I’ve been on the site since I first found Larry Lump in July, and went to the clinic on 1st August. Had the usual examination, mammogram and they took six core biopsies. I was told to come back on the friday to see the surgeon, but that it didn’t look hopeful. I saw the surgeon and he broke the news that yes, I had lobular BC and that it was quite aggressive, the treatment plan would be for total mastectomy, chemotherapy, rads and either herceptin or hormone treatment, probably hormone but we would know after surgery. Before going any further though I was to have bone and CT scans.

On the 17th I was told that my scans were clear, huge relief, and the was given the choice as to which order to do the treatment. My surgeon suggested the Neo Tango trial and the chemo first route seemed good to me. Apart from anything it would give me time to save up for nighties etc! I was rejected for the trial after more core biopsies - Larry wasn’t quite big enough! But, after discussion with my oncologist we decided to go ahead with chemo anyway.
I was started on six cycles TAC, with a check ultrasound scheduled for half way. After three treatments my onc called a halt to TAC as it was just a little too drastic for me, and would restart me on FEC after a two week ‘holiday’. In the meantime Larry and I went for the ultrasound - and we discovered Larry had shrunk to a third of the original size! Excellent news.

I had my first FEC on friday, then yesterday went to have an ultrasound guided marker to be fitted. I was also going to see my surgeon as it had been suggested that because of my BMI I wouldn’t be considered for reconstruction (it hasn’t changed since August) and I needed to know what my options could be and the possible affect on my prognosis. I’ve been working through the ramifications of being loppy without Larry - being an E cup that wasn’t something I wanted at all - plus i thought it might put strain on my back. I also wanted to know the risks if I requested a lumpectomy or WLE instead of the mastectomy. The final ‘solution’ would be to balance it up by having a double mastectomy. The idea of a prosthesis was appalling to me, I have never liked wearing a bra and much prefer a crop top. The thought of being trapped in a straight jacket for the next 30 years just was not a good thought at all. So, I was ready to discuss all this with my surgeon.

First thing that happened was the doctor wanted to use the better, more powerful scanner in radiology - so we had to wait for a window - that took 2 hours, but we got it. However hard she tried, she just could not find any trace of Larry Lump anywhere, so no marker could be fitted. When I then saw my surgeon he explained I’d rather thrown him into a dilemma - with two chemos yet to do, he could see no justification for surgery on the breast. He wants me to have an MRI scan to double check, but apart from debating how many lymph glands to take for sampling, it appears there’s not much more he can do. Lovely to see a doctor with a big smiling face though!
So, I’m still in shock, feeling like a bit of a fraud - but still have two more chemos to go.
I’m just so very fortunate, whether it was because Larry was caught early, or whether TAC just happened to be the right chemo, or whether it was the type of cancer - or all of these things - might never know.
I hope that this brings hope to you, and that you know that I too have lived through the waiting game, the worrying, the loss of hair, thinking about surgery and rads - the only difference is i’m not actually having the mastectomy now.

hugs

Ruth x x x

What excellent news Ruth.

I remember your first post and have followed your story since then.

Thank you for sharing this latest update with us.

Margaret x

Hi Ruth,

I remember your posts on the neo-tango thread way back, and have seen others since then, so absolutely thrilled at your news! As I have the same situation now, with my lump also gone, I will be raising this with my onc next monday! I’ve still got 2 Taxol to go, but my ultrasound showed no lump - I was told originally I would have to have mastectomy regardless, but with your news I going to challenge that!
What a christmas pressie! Way to go girl :o) You must be flying!!!

Hugs and love,
Shannon
xxx

Hi Ruth

TAC caused my two 5cm lumps to disappear but I still had to have a total Masectomy and node clearance. They found no trace at all of cancer in the breast but did find it in 21 out of 24 nodes plus some in tissue around nodes though not in chest wall. I had a CT scan last week and am having a Bone Scan tomorrow. Results at Oncologist next Tuesday. I queried at time whether Mas. necessary as lumps vanished after 2 doses of chemo and was told yes as one cell remaining could regrow, I had a very agressive kind my first lump appeared in two weeks, removed by Lumpectomy and two new 5cm. lumps reappeared in another two weeks. I guess it all depends on type of Cancer we are all different great to hear your news.

Merry Xmas

Val

Hi Ruth

What fantastic news

All the very best

Kim x

Thank you so much Ruth for sharing your wonderful story with us, we need to hear the ‘good’ stories as well as the bad, I put a post on a couple of months ago about my cousin Jean who quite by accident found out she had breast cancer, her mother had died of it through being too scared to see a doctor about her lump and had had the lump for over 2 years. Jean had an agressive grade 3 cancer and had WLE followed by chemo and rads, 10 years on Jean is doing fantastic and has not touch wood had any problems at all, no recourrance nothing! She never even thinks of breast cancer now until it is time to go for her 3 yearly checkup the same as anyone else.

I had a lobular cancer as well as a ductal, mine all started from calcification, i never had a lump at all but had two cancers in the same breast. Your story Ruth has given i am sure so much hope to so many of us girls here, i am so glad you have been spared the mastectomy and ‘larry’ went into full retreat! It will give so much hope and perhaps make chemo easier knowing how effective it is for other girls about to start treatment.

My dear brother-in-law Jim had mouth cancer 15 years ago, had a terrible time lost 1" of jaw and bone and his teetht, this year it came back and he lost more teeth and bone in April. The only treatment he had was surgery, no chemo or rads. October he found a lump in his neck and after biopsey found the cancer had come back and spread to his neck, he had an operation three weeks ago to remove the lump, all his lymph nodes in his neck and a gland. 52 staples were removed from his neck, horrific. Anyway he has to have both chemo and rads at the same time, as i have never had chemo and his wife who had breast cancer 2 years ago has not either, we are a bit not sure what to say. Now after reading your wonderful post, i can tell him how good chemo is even if nasty during treatment and i am sure it will give great hope and encouragment to him and his family, so your story Ruth is even more far reaching than you thought.

Much love
Suzy

Ruth - that is absolutely brilliant. :)) huge smile on my face thinking of it! I love good news, wherever they come from, and seeing that sometimes WE win is great!!!

Congrats, and all the best for the two last chemos… I am sure you are counting days…

Margaret, I remember that first post too, and how you held me together through that dreadful time of diagnosis. Thank you x x x x

Hi Shannon - not quite flying, yet - still in shock! But absolutely thrilled at the news. I wasn’t too keen on seeing the surgeon, but my BCN “persuaded” me (via email) and when I glanged at her during the consultation her face was one HUGE grin!

Hi Val, my surgeon’s point was that any ‘stray’ cells should be cleared up by the last chemos now and if there are any left he’d expect them in the lymph nodes - hence I’ll still have some, if not all, cleared. But he wants the MRI done first. I think I was just very fortunate to catch it so early and before it started getting nasty.
Happy Xmas to you too!

thank you Kim x x x

hugs to you all - and thank you

Ruth

x x x x

Suzy, thank you. Sorry to hear about Jim, but if my story can help at all I’m honoured. I was a little skeptical of chemo, but I was determined to do all I could. I had a total of two “holidays”, after the first chemo I got a bad chest infection, so there was a delay of a week before I could continue - then after the third I was just so fatigued that my oncologist called for a two week break. I really felt that these breaks were going to stop the chemo working as it should. But, to my delight they didn’t!
It’s also thrilling my family - we have had a lot of cancers and, so far, all have died within 9 months of diagnosis. Looks like I’ll be the first to buck the trend, which will do so much for the younger members of the family.
x x x x

thanks Lilith - last chemo is 11th January - then we shall party (after a few weeks to get back on my feet!). Good to know you’re smiling!

hugs all

Ruth

x x x x

Hi Ruth,

I am soooooooooooo pleased for you!

Kat x

Thank you Kat x x x

That’s brilliant news Ruth. What a fantastic Christmas present

Love
Debbie

Quisie (Ruth)
That is such good news - you have done so well. What a journey you have been on and what a story you have to tell.
Congratulations and may the good news continue.

Rebz xx

Fabulous news Ruth, thanks for sharing it. Bet those last two chemo’s will be a doddle!!! (well, lets hope so). Have a brilliant Christmas.
Love jacquie

thats extraordinary Ruth, brilliant news.

Love Diane xx

That’s really good news Ruth - and as so many have said - it really is nice, and encouraging, to hear the good stories.

Hope you and yours have a brill xmas

margaret x

Hi Ruth,

Hope you log in and get this, my sister in law phoned me about my brother in law Jim, he had just had 3 days at the Brimingham dental hospital, all doom and gloom, why do they do this to people, have told him he has a 40% chance of surviving, (great he has not even started his treatment yet) also if the chemo does not work there is nothing else they can do for him. Can you imagine how they must have felt. I told Angie your story, she was so uplifted and it has put them both back on the postitive train again. So Ruth, thank you so much from the three of us.

Suzy