Need a little help understanding

Hi all, I don’t know if I have done the right thing by starting this discussion but I am a bit confused so here goes. I was diagnosed with Breast Cancer on 22/07/08. This was following 2 biopsies on a lump plus 2 core biopsies on suspected pre cancerous cells in my left breast. Results showed both areas were malignant and I had a mastectomy and axillary node dissection on 18/08/08, the reason being that my breasts were very small to start with (32A). My consultant was happy for me to go on holiday for 2 weeks prior to my operation and said that the indications were that it was a slow growing cancer. Whilst in hospital I was advised by a nurse that I probably would be given chemotherapy just in case any bad cells had escaped the mastectomy. She explained that, due to my age, my cells regenerate very quickly and they would probably give me the treatment just to make sure there was nothing left. I was expecting this anyway so it didn’t come as a surprise. Anyway, I saw my consultant yesterday and he informed me that pathology results had found the following:- tumour was 2cm, pre-cancerous cells 6cm, out of 13 lymph nodes taken none contained cancer. He went on to explain that he didn’t think I would benefit from either chemotherapy or radiotherapy and said that because there was a 95% chance that the cancer WOULDN’T come back he was going to suggest I take Tamoxifen. I was in complete shock as you can imagine as I was expecting something completely different! I am still in shock and cannot believe that I have been so lucky. A nurse actually said to me that it was very rare that a patient left without having chemotherapy or radiotherapy and she was so happy for me. My mind is still in a whirl and I feel so grateful to think that my cancer could actually be gone. Now it is sinking in though I keep asking myself why no chemotherapy? Please don’t get me wrong, I am not whinging or complaining because I know how awful this treatment can be and I trust my consultant and his team 110% but I guess I am just confused. Is it because my lymph nodes were clear? Is it because the tumour was only 2cm? Is it because I had a full mastectomy? Is it because there is a 95% chance that it WON’T come back? Or is it a combination of these? I know I should have probably asked these questions yesterday but I just didn’t think about them until the news had sunk in and by this time it was too late. I feel so very lucky and would like to send my very best wishes to everyone out there who is battling this awful disease. If anyone has any answers or comments I would be very grateful for them. Take care, Carol

HI Carol

It’s all very confusing isn’t it.
I had a WLE and axillary node clearance in Jan 05. The tumour was grade 1, multi foci the largest of which was 1.2 cm. There was extensive DCIS and 1 out of 16 lymph nodes involved. Unfortunately the margins weren’t clear so I went on to have a full mastectomy. When the results came back the rest of the breast was clear. That meant I didn’t need radiotherapy because they were confident all the cancer had been removed. When it came to deciding about chemo the onc told me that statistically the benefits would be minimal (about 2-3%). Bearing in mind the horrible toll chemo has on the body we decided that I would have hormonal therapy. I was pre menopausal, so had zoladex injections for 2 years to stop my ovaries from working and am also on tamoxifen. A couple of years ago a report came out that said for women with my prognosis a combination of zoladex and tamoxifen has the same benefits as chemo and tamoxifen. It seems we made the right decision.
I think you’ve answered your own questions - it probably is for all the reasons you’ve stated. I too felt lucky that I didn’t need radio or chemo. If you have more questions for the onc you could always speak to his secretary and ask them to pass them on, or could you email him?
Take care
fantan

Hi Carol,

I had a tumour and two areas of DCIS so needed a bilateral mx. Because all the cancer was removed and no lymph nodes were affected I did not need rads or chemo, but was offered tamoxifen. Like you I was expecting the worse and it took some days for the good news to sink in. Tamoxifen does present its own challenges (side effects etc.) but of course nothing like being blasted by chemo. The thing I have found though is that the physical treatment is over before my emotions have had time to catch up. 8 weeks post op I was back at work but I’m still trying to absorb the enormity of the diagnosis/treatment and the effects this will have on the rest of my life. Of course everyone around assumes everything is back to normal now !!!

Best wishes for your continued good recovery. Take as much time as you need.
Misha

Hi Misha
I didn’t feel I could go back to work for 9 months, so well done!.
People like to assume everything is back to normal because thinking the alternative is just too hard. They find it difficult to cope with others problems. If they think everything is back to normal then it means we are ok and they don’t have to face the facts of our diagnosis.
I really struggled emotionally after I’d recovered physically and I had 6 sessions of counselling with someone used to working with cancer patients. It really helped.
Your comment about taking as much time as you need is so important. Everyone’s recovery is different, there is no set pattern or timescale.
One thing I have learnt is to ask for help and tell people how I really feel - I was so used to bottling things up and not wanting to ‘bother’ my friends. I also now know who my real friends are!
Take care and be kind to yourself.
fantan

Hi Joekatie0

I am no where near knowledgeable to be certain about what I say but I will give you my understanding. There are some ladies on the site who really ‘gen up’ on BC and they may answer this thread.

I certainly know of folks that have had a mastectomy and no chemo. Chemo is usually given for higher stage/grade cancer and or when the lymph nodes have cancer cells present as that it is when it is more likely but not certainly that cells may have travelled to other parts of the body. Chemo is sometimes given before surgery to shrink tumours.

I know you took a while for the news ‘to sink in’ but you could ask a Breast Care nurse to explain what the ONC said. I don’t ask her opinion as she may have added to your confusion.

I hope you can get further support from the nurses on this site and those more experienced than me.

Take care

OOps -That should have read ‘wouldn’t’ not 'don’t

Hi there

Thank you all for posting your replies as they were a great help to me. I definitely agree with you Misha and Fantan when you say that your emotions need time to catch up! Everyone around me is jumping for joy and saying how great it is and they are so right, however, I feel very flat and, in fact, the last couple of days I have felt like crying for no reason - I know I should be over the moon and I feel so selfish because there are so many people out there not getting this type of good news. I’m sure this will pass. I am also going to try and tell people how I am feeling because bottling things up doesn’t help in the slightest does it?

Thanks again to you all for replying and take care xx Carol xx

Hi Carol,

I am in the same boat as you.I am 6 weeks post mastectomy with immediate recon.I don’t need chemo or rads,just tamoxifen. However I am so weepy and can’t understand why really.I think the comment above about the physical treatment being over before your emotions have caught up is SO true. I am like you ,I feel guilty about being so miserable when my prognosis is good.
I am glad I am not alone in this (although don’t really want anyone else to be miserable)
Hugs
Dot
xx

Hi Carol… I was dx last Oct had Mastectomy …had path results no rads nor chemo …just Tamoxifen … i too was like you hadconvinced myself that I would have chemo …and wasnt disappointed …wrong word cos it is a vile treatment …but couldnt understand why not …no one explained to me !!! Ten months on I still wonder why not and hope that there wasnt anything they missed and will flare up and will end up having it anyway and maybe more so… I was and still am very confused nad keep telling myself that each cancer is different and is treated differently and that my spec obviously knows more about it than me …but it still doesnt stop me worrying especially as I am coming up to my 12 mth check first since DX …by the way I was 52 when dx and pre meno

Thanx Mazzie

Hi all, thanks again for your comments it is really reassuring to know that other people have been through the same sort of thing. When I read about people on this site who have to cope with secondaries and chemo/radio I feel very humble. I am feeling a lot better and more positive today - hope it lasts and thanks again to all of you.

Hi Carol,

Glad you are feeling a bit better and I hope it continues.
I was at my GP yesterday as I needed another sick line.I told her how I am feeling and how guilty I feel about feeling this way.
She was brilliant and said not to focus on others but to just think about me and what I have been through.She thinks how I am feeling is totally understandable and I will begin to feel better. She recommends talking to my BCN which hopefully I can do at my clinic appt today.
Funnily enough I feel better today,maybe just admitting to a professional exactly how I feel and not being told to pull myself together (as I imagined for some stupid reason) has helped.
Just have to do the same at the clinic now (no more brave faces saying I am ok!)
Dot
xx

Hi,great comments and so pleased I have read them.It offers great support.
I am 42, 3 weeks now post op and waiting to know on Thursday,if I need any chemo,just in case.Had a full mastectomy,lucky it had not spread into lymph nodes,as Biopsy revealed earlier.Starting Tomoxifen next week,abit scared for Side effects.|Still in shock though.Comes in waves though,then sob.Good it get it out.
Worst part of day,is shower and changing the dressing,that I can now face myself.
Then once dressed,feel better.Can,t sit around in my dressing gown and slippers any more,as this now reminds me when I was in the hospital for 1 week,when I felt my most worst ever in my life.I still feel tight and sore and numb,can,t be “inflated” yet,as skin still so tight.
So lovely to read all your comments and “Be Together” in this nightmare.Thank you. xx

Hi all,

The shock has worn off I think and I am beginning to feel a bit more normal (if you can call it that). Dot, you seem to have a good GP that you can talk to. That’s good as I don’t feel that my GP would give me much support (he thought my ‘lump’ was a cyst and I had to wait 5 weeks to be seen by the hospital). My BCNs are very good though. Hope yours managed to help you today. December, I am 41 and 3 weeks post op so we are at the same stage. I feel the same as you and have to get dressed in the morning but I don’t like wearing a bra and prosthesis as I have a lot of fluid and it’s uncomfortable sometimes. My dressing was taken off 2 days after my op so I had to get used to showering and such without it - I was really scared to look at first but now I just try to ignore it. Hope all goes well for you on Thursday - please let us know. Got an appointment with consultant in December regarding delayed reconstruction so that should be fun - wonder what they can do with a 32A! Ha ha. Take care all xx