Anybody got any positive stories following cancer returning?
I had chemo in 2007, then a mastectomy, followed by radiotherapy and found a lump below my scar last Friday, which I was told today is Grade 3 cancer (again!). (Am currently on Herceptin.)
It’s like I’ve been playing ‘snakes and ladders’ and climbed the ladder only to slide right back down again.
I would love to hear from any other women who have successfully overcome this ‘hurdle’.
Just bumping this up for someone to reply…
Hi There,
I,m not completey sure but perhaps some secondary ladies may confirm that a local recurrence is more successfully treated and not classed as a spread. Even so I bet you feel that all your treatments have been in vain.
I too am waiting for biopsy results on a lump under my scar. I was dx May 07 grade 2, WLE, Fec and Rads.
If the results are bad then need to have Mx. I so wish I,d gone for that options now in the beginning.
If you dont mind me asking, what other treatment have they offered you?
I have been told that cannot do rads more than once on the breast but I,m worried about doing chemo again.
Best wishes to you and hope you get more replies from people in the same position.
Love Andrea xx
My friend had a recurrence,2nd grade 3 in same breast at same time as I had my first dx.She had op and chemo and 2 years later is NED and has been told spread is not much more likely than first time as lymphs were clear.She had mast second time though cancer was small because surgeon said breast was ‘diseased’ and better removed.She is 46.
Thank you for replies, Andrea and Horace
I’m not sure if mine is a local recurrence yet - asked my consultant, but he just said that it looks to be as is Grade 3 again, but in my (humble!) opinion, this does not determine it!! Maybe they have to carry out more tests before they can say yes or no for sure?!
They have said that they are looking at giving me two new types of chemo - Lapatinib and Capecitabine. (Had AC & T last time.) They cannot remove the tumour yet as it is stuck to my chest wall and would really disfigure me, plus they want to see if the new chemo has any effect. They hope it will shrink the tumour and make it come a little “unstuck” from the wall, before they try removing it.
I have been told that I can’t have radiotherapy again.
I queried why it has come back, as the radiotherapy and Herceptin are supposed to stop it - they said that the new tumour may not be receptive to Herceptin…and that maybe the radiotherapy and Herceptin have just been stopping the tumour growing much (it is 13 x 8, which I assume to be milimetres).
I, too, am dreading chemo again, as it is vile!
Don’t beat yourself up about not having a mastectomy, Andrea - I did and yet it’s come back, it seems to be the luck of the draw?!
I am 37 years old and have three children - aged six and (twins) aged three, am soooo lucky to have them, but also soooo fearful about leaving them!
Horace - what does ‘NED’ mean?
Best wishes
Sally
x
Dear sally NED means no Evidence of Disease!
Should have said that both my friend’'s tumours were triple negative.
Hi Andrea all the best.
Will be thinking of you at 10.30, hope you sleep well tonight - loads of love
m x
Hi Sally,
Only just stumbled across your thead, so sorry to read you are back on the rollar coaster. I am 2nd time around too, also have just found it has spread to clavicle lymph nodes this week.
Was wondering how are you doing now? Hope that treatments are not to bad for you.
Best wishes
Nikki
Hi Nikki
Sorry to hear that you have been diagnosed again too. I read in the latest Amoena magazine that in 40% of patients, whose cancer recurs, it spreads to the lymph nodes. How far are you into your treatment? How did they find out - did you have a sentinel node biopsy? I thought that they only checked your lymph nodes at the same time as they did surgery?!
I am doing okay - the oncologist is not going to start my treatment until after Christmas, as wants me to enjoy Christmas first. He is leaving me on Herceptin, whilst he tries to get the PCT to fund Lapatinib for me instead. Fingers crossed!
Best wishes,
Sally
Hello Sam. So sorry to hear about your recurrence.
I agree with Horace - as far as I know a recurrence can be successfully treated and is not considered a secondary. After treatment you will have the same chance of non-recurrence as the first time.
Lapatinab isn’t exactly chemo. It’s another type of targeted treatment specially for HER2 cancer and is thought to work if Herceptin hasn’t so I do hope they manage to get it for you. It’s only been licensed in the UK this year. I’m not sure but I don’t think the side effects are particularly bad.
I don’t know anything about Capecitabine but I’m sure lots of ladies on here will know about it.
Take care
Anthi x
Local recurrences can be successfully treated as can the site of a single regional recurrence. However some regional recurrences are regional metasteses and are not curable…it is hard to get information ont his type of recurrence but I have it…and know only too well what the impact of a regional recurrence is.
Sally…do talk to your medical team about your own recurrence…recurrences are not straigtforward (well cancer isn’'t straigthforward) and prognosis depends on many factors.
best wishes
Jane
Hi Sally - I’ve been playing snakes & ladders for a few years now :(. I started the game back in 1990 - up the ladder and down the snake 6 years later with a new tumour in same breast so had mastectomy but could have no more rads. Then 6 months later had a recurrence on the same site which appeared as minute flea bit type marks which my surgeon recognised straight away as it having come back. I needed very drastic surgery for such a small thing. Then couple of years later had another large tumour in the other breast, then again 2 more years on had extensive spread to my bones. That was six years ago now and still doing o.k. My tumours were all grade 3 and as is now known were HER2+ but in those days that wasnt known about. However I have been able to have herceptin now for 5 years and it has continued to work for me. I still consider mine to be a positive story despite the ups and downs cos I am still here. I hope the permission for lapatanib is forthcoming and wish you all the best.
Dawn
xxx
Thank you Dawn, Jane and Anthi for responding to my thread.
As you say, Jane - cancer isn’t straightforward so I will need to get more information from my oncologist - it’s hard to know what to ask. I hadn’t heard of regional metasteses - what does this mean for you?
Dawn - so sorry to hear of your experiences, talk about being ‘put through the mill’! I am so frightened of the cancer spreading as I know that it then becomes incurable. Knowing that it is there inside your body, whilst you are awaiting treatment, is scary - you wonder what keeps it where it is, what makes it spread, etc - if we could answer that we could maybe find a cure! I am so pleased to hear that you are still doing okay - long may that continue. We all know that life is precious and anything could happen anytime, but somehow that is easier to deal with than the uncertainty caused by this horrible disease.
I apologise for being melancholy, but feeling a bit up and down at the moment. Full of cold, and stressed out trying to get prepared for Christmas, etc.!
With my very best wishes.
Sally
x
Hi Sally, I only found out after what had been a nice shiny clean scan, 2 weeks after that, before 1st chemo, a node came up in my neck, a week after that (and after my 1st chemo) I felt like something was pressing on my throat constantly. A new scan shows that the regional reccurrance has now spread to the clavical nodes, along with the nodes along the way there from my original site. They have told me that they cannot now get rid of the disease and it’s just a case of holding it for as long as possible. It’s hard, been through a lot of crying, a lot of contemplating the future and trying not to imagine when the end will come and how it will be. It’s hard to avoid that though, brain keeps running overtime on those latter points though!
Right now I am 2 carboplatins down, I don’t feel that it’s working as pressure on throat the same, they say they will add gem to the mix if we don’t get a response. I have triple negative, so no targetted options for me. Handling the chemo ok, last years from the primary has mast, node involvement with 4 X FEC and 4 X Taxotere with 20 rads.
It’s a s**** really
Nikki
Oh, Nikki
What can I say? I really shouldn’t be moaning when there are people worse off than me. I still having everything crossed that they may be able to get rid of my cancer.
All I can hope for, for you, is that medical advances can offer you something in the near future.
Sending you my best wishes and a hug.
Sally
x
Hi Sally, you are definately NOT moaning. This place is for all of us to express how we feel, so that we can lighten the load just a little bit by not feeling totally isolated or having to put on the brave, positive, chirpy face that everyone around us wants to see. It’s a s*** disease, it hurts us all in different ways, I am lucky in that I am coping with what is going on at the moment. Also in that I have a lovely partner, life, job, interests and hobbies and for a little while more I am going to carry on being as ‘normal’ as I can possibly be. As for the future, who knows what it could have been, but then I could get hit by that bus too.
Best wishes to you Sally, and thank you for the hug
Best
Nikki
Sally, Nikki and everyone else on this discussion
I started a separate discussion thread with my experiences, then I read this one and felt I should write. I had a lump removed followed by radiotherapy 12 years ago and I’ve just been diagnosed with a return in my original scar. Tiny little tumour - only 3mm at present - but going in for a mastectomy on Monday (29th). I’ve had a chest x-ray and liver and bone scans and it doesn’t look like it’s spread anywhere. Like you I’ve been told I can’t have any more radiotherapy, and from the core biopsy it’s a grade 3 so I’m probably looking at chemo. I’ll get the pathology back on 14th January so I’ll know more then.
Like you say, Nikki, we’ve just got to keep soldiering on because if it’s not this, it could be something else (like a bus). We’ve just got to keep our families around us and be thankful we’ve got them.
Have a happy Christmas everyone.
Linda
Hi Linda
Sorry to hear that it’s come back for you too, hope you still manage to have a good Christmas and wish you a speedy recovery from your operation on Monday.
Will be thinking of you.
Best wishes
Sally
x
Dear All,
I’m not really sure what i can add to this discussion but felt i wanted to write xxx
I had a mastectomy on Nov 11th 08 and no spread to lymp but 4 nodes removed.I saw the Oncologist last week to discuss the Chemo which begins in Jan.
In 2001 i had cervical cancer, resulting in a hysterectomy and all lymph glands removed - i had to ask the question-is this related to my previous illness or just bum unlucky?? just unlucky was the reply!!.All i can thin k now is will it return again?? I think we should all just enjoy every day and, for whatever reason, take all the crap that comes with it.
I wish you all the very best
Louise xx
Hi Louise
Just wanted to thank you for your post and wish you good luck with your chemo.
Sorry to hear that you have been through the mill - what a bummer!
The not knowing is the hardest thing to live with - I wish that I had a crystal ball, but maybe that wouldn’t be a good idea!?
Wishing you all the best too.
Sally