Still have your primary tumour and wish that you didn't?

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Hello All,

 

I still have my (rather large) primary tumour and hope that some time in the future, it can be shrunk and removed.  I have no discernible pain from my liver mets but I do get a bit of pain (sporadic twinges, itching and stinging) from my rather wierd left breast. 

 

Prior to my liver mets dx, I was told that I would be on e/c chemotherapy followed by surgery. Once the liver involvement was discovered, all talk of surgery ceased.

 

I’d be very interested to hear from others in a similar position. Have you asked about surgery? If so, what were you told? 

 

Thanks x

 

 

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Hi cress

I was diagonsed with liver mets at the same time as the primary. It was just 1 very small one though on the liver and they decided to do a mastecomy after I went through fEC chemo - they also did a liver ablation. Hope this helps

SS

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Hi cress mymum had liver mets dx same time as primary, she had a very large breast lump and was told she will never have surgery. She has not had chemo as she had a reaction to docetaxol. She is on herceptin, pertuzumab and tamoxifen her latest scan can’t even detect her breast lump anymore and breast marker is in normal range now. She started treatment last November /December

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Thanks for that info Helen, helps to understand the weird choice to not remove tbh

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Mum’s was a whopper too around that size of 10-12cm she also has 3 traces on the liver I can’t give exact sizes. I don’t wanna ask her as she’s rather stressed as has to have ovaries out to to one becoming enlarged and continuing to grow. Stay positive cress xx

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Hi Cress

 

You answered me on the newly diagnosed board

 

I found a very v small lump and a skin crease that was new in early July GP could not find it was asked for recall which I went along with, still nothing! she did not want to refer me under the cancer 2 week wait rule but I was lucky as I have insurance via work so went with that.

First visit yes it was there, biopsied, Mammagram (not seen on that) ultrasound yes confirmed.

2nd visit yes stage 3 aggressive plan surgery, chemo, and radio need MRI

3rd visit MRI showed ivasion of chest wall and ? sternal mets no surgery now to have chemo to shrink it then surgery CT scan requested

4th visit (last week) this time with oncologist, surgery told  now probably never, bone mets with possible liver mets, chemo no not at the monent, so treating with letrozole and bone strengthening treatments.

And yes I would like it removed! but my understanding it never will be right breast now looking/ feeling more wonky than it was, the lump is bigger and is now easy to feel

I also am feeling iching in area over the tumour plus twinges in the area plus twinges in multiple boney bits but was told that a side affect of letrozole could give you joint pain so not sure which is which! I must say I look at the single little pill and think is that it!!! I want bigger gunned treatment!!! but am running with it and see what the return to the oncologist brings at end of October

Should be having a bone scan prior to that

Lets hope we can can the darn thing chopped off sometine in the future!

Take Care x

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Hi All

 

I was finally diagnosed with breast cancer, with mets to lung and bottom of the spine and is also in a few lymph nodes.  I’d noticed some changes in my breast and after seeing my GP was sent for a mammogram

privately at my request. My Dr seemed somewhat dismissive because she couldn’t feel any lumps. Anyway

the radiologist asked whether I’d like an ultrasound, having both procedures at the same time would be 

cheaper.  I took up this offer and it was the best money I 'd spent because the consultant I saw afterwards

said if I 'd just of had the mammogram the tumour of 24mm would not of been picked because I have dense 

breasts.  I was shocked, why are all these women having these mammograms getting a letter saying everything is OK when infact if they have dense breasts a tumour will very possibly be not picked up.  Why

aren’t the radiologists told to inform their patients to give them the option to have an ultrasound.  It must

come down to money, but surely an early diagnosis would save the NHS  a lot more money.

I have been on Letrozole since and the side effects for me are minimal.  I expected also to have surgery

but so far I have good response. my breast tumour has depleted, some of the lymph nodes have gone back

to normal and the mets on my lungs have reduced.  I’m seeing my Onc today for result of a bone density

and hopefully I’ll be able to quiz him a bit more of my concerns, the next steps etc, I’m still very much in the

dark, especially when I read some of things on this forum, I feel there are s o many people going through

such terrible times, it makes be feel a bit of a fraud so I have tended not to write on the forum only read.

My thoughts are with you all, we have to all keep strong.

with love x

 

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Very informative mag and I can’t see why you think you are having it easy…Sounds a nightmare like everyone else on here. We get comfort and insight, knowledge from everyone’s posts so keep at it. It really helps. Scary the breast density stuff. Heard that a lot on here. I think we need to demand ultrasounds! Though my cancer was picked up on mammogram. Sending love Lorna x

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Hi everyone I was diagnosed in oct 2013 with breast cancer and bone mets at the same time the breast lump was 12cm and had letrozole for a year which shrunk the lump to half the size but after a year it stopped working. Had  e/e combo for 8 mth then lung mets so was supposed to go on go cape but had to have wisdom tooth extraction. Because I had an infection in the tooth had to stop denosemub inj and no treatment for 4 months. Lump now hugh so a  bit scared been on cape one cycle and halfway through second cycle no improvement that I can see hopefully will take a bit longer to show improvement. I was told that removal of the primary lump coild make other tumours more aggressive and you can measure to see if treatment is working on the other hand seeing it get bigger is very scary!