Anyone had mastectomy, no rads + no chemo ?

I was just wondering if anyone just had lumpectomy or mastectomy with no other treatment except tamoxifen or arimidex ?

Marial have PM you. Jackie

Maria, on breakthrough.org.uk there is a useful guide explaining the different treatment guidelines, ie when Chemo or rads are offered in an adjuvant setting after mx and when not. X

I had a double mastectomy on 14th December and was told at my post op meeting this week that my ongoing treatment will be letrozole for 5 years. The deciding factors in this apparently were that my lymph nodes were clear and that there was no residual disease found after the mastectomies. I think that being well past my menopause might have played a part too although no one mentioned this.

To say I was relieved to avoid chemo and rads would be an understatement.

Hi Marial

I had a mx in October 2008. No chemo or rads. I took Tamoxifen for about 5 months then my surgeon advised me to come off them due to bad side effects.

I was dx with DCIS after my first routine mammogram. When I got my results I was told I also had a small grade 2 tumour developing (10mm I think) but this was far enough away from the chest wall to be safely and completely removed and I did not need further treatment (My lymph nodes were clear too)

I have a slightly larger risk than the “average woman” of getting bc in the other breast but not enough to put up with the side effects I was experiencing from Tamoxifen (that’s what the surgeon advised me anyway). I just go for annual checks now. Hope that helps.

Love
Maude

Hi Mariel
I was in this ‘category’. Initially when one lump was found, the plan was lumpectomy and chemo and maybe rads. Then I had MRI and other staging tests which showed several areas of concern, so plan changed to mx and 5 yrs of tamox.
I think is is more common that I first imagined as I wrongly thought cancer=chemo, so was shocked but very pleasantly surprised at this.
PS I hads no lymph node involement either.
Regards,
Cathie x

Hi Mariel,

I had a WLE at the beginning of April to remove a lump but the margins were not clear so had a mastectomy and SNB at the end of April 2010. They told me because they had removed the breast and the nodes were clear I did not need chemo or rads, I am on tamoxifen for next few years.

Jennifer

Hi,

My history is exactly the same as Maude. DCIS found after routine mammogram, 1cm tumour starting, mastectomy and Tamoxifen. I too have had to stop the Tamoxifen due to severe side effects. Originally I believed I would have rads but because I had the mastectomy and there was no node involvement, I didn’t.
Hope that helps.
Val

Hi Mariel,
I am just 6 weeks post op Mastectomy and Sentinal node biopsy. They found 3 lumps, 10, 5 and 3 mm plus some in situ. since MX and re biopsy have been told they were all stage 1, all removed, clear margins, No chemo, no Rads just Ttamoxifen for 5 years.
I am 40yrs old with 2 teenage kids.
It all happened so fast, I was given results on Tue and op on Fri. I barely had time to register I was ill before I was told I’m ok panic over.
I am still reeling a bit. I feel like I’ve cheated it. Some of the other girls on here have been through so much more and are so brave.
I have that awful nagging feeling in the back of my mind that keeps saying ‘what if…they are wrong, it has spread, It’s not gone, It comes back’
I have had no side effects from the Tamoxifen as yet. I am having pain in my arm this last week from the lymph node biopsy which is worrying me a lot at the moment as I want to get back to work. See what my BC Nurse says on Monday about that. I haven’t been given much info on Lymphoedema.
I hate my scar and having to wear my falsie but really when I consider what could have been I have to remind myself to look on the bright side and feel positive. I have given up smoking which is a plus too.
I hope you are doing ok. PM me if you want to chat.
Emma

Hi Val

That is the first time I have come across someone in the same situation as myself.

Good to hear from you.

Maude xx

There was another thread that identified stress as an instigator - high incidence of BC amongst teachers - I no longer teach.

I had DCIS/invasive dx on 2nd routine screening. Biopsy, WLE then mx/snb and just tamox for 5 years - 6 monthly checkups/mammo.

I also know of someone who had just the mastectomy and no tamoxifen.

I think we have to see this disease affecting different people differently. The tamoxifen side effects drive me mad at times and especially affecting my joints but feel lucky to have gotten off so lightly.

good luck everyone.

I have a friend who posts on here occasionally, who had DCIS fairly extensively so had a mastectomy and immediate reconstruction, but no chemo, no rads and no tamoxifen.

Hi Maude, One of the reasons I rarely post is because I’ve never known anyone in the same situation - not having chemo or rads and giving up on the Tamoxifen. I’m so glad to know that I’m not alone. What has your doctor said about stopping the Tam? I’m still waiting for an appointment with the consultant.
Another worry is this business of stress. I am a teaching assistant but I do teach quite a lot and with the other responsibilities I have - my job is extremely stressful most of the time. Definitely worries me how many teachers there are with BC.
Val x

Thank you everyone for sharing your experiences. Good luck to you all.
Maria X

Hi Val

After 5 months of taking Tamoxifen I was suffering extreme anxiety. I went to see my doctor about something unrelated and he said I wasn’t my usual self and he could tell I was extremely anxious. He suggested that I come off the Tamoxifen for one month to see how I felt (and make sure the anxiety was the medication and not the whole bc thing). I was due for my six month pre-op consultation in one month so he said I could discuss it with the consultant then. I started to feel better when I stopped taking the medication.

At my appointment I didn’t see the consultant, I saw one of his team (who looked about 10!). When I said I had come off the Tamoxifen due to the anxiety he said “Tamoxifen doesn’t cause anxiety”. I immediately shut down and didn’t want to discuss it with him any more. He went off to see the consultant and came back saying they wanted me to have a blood test to see where I was with the menopause. (I was 52 at the time and I had a hysterectomy in 2002) Then he started going on about me going back on the Tamoxifen when the blood test results came back and he excitedly told me how they could induce the menopause if I hadn’t already started it.

I couldn’t go back until 4 weeks later because I wanted my husband to come with me. Those 4 weeks were awful. I was in such a state worrying about coming off the Tamoxifen but not wanting to feel so ill again on it. I was all ready for an argument at my next appointment but when I walked in (I saw the consultant this time) he said “You are peri-menopausal and it is not worth you taking the Tamoxifen. The side effects you are getting outweigh the benefits”. And that was that!!

I hope that helps.

Love
Maude xx

Hi Maude,

Thank you for that - yes it does help. I began taking Tamoxifen last March and apart from the usual hot flushes I thought I was escaping quite lightly, especially as not having to have rads or chemo. But around November time about 7 months after starting, I was getting a real sicky sort of headache that I couldn’t shift, I felt constantly nauseous and ill,sleep was impossible, I had terrific calf cramps that were leaving my legs feeling bruised, my joints ached and my brain felt like it was racing. Random thoughts pinging around inside my head. I’ll be honest, at one point I panicked as I thought I was having a nervous breakdown. The reason I thought ‘Tamoxifen’ was because the nausea was worse about an hour after taking the drug. I felt so awful I went to see a doctor at the local walk in centre on a Saturday afternoon, who said they thought I was right and it was an intolerance to the Tamoxifen. Well, I didn’t like the thought of stopping either so I decided to wait a bit and try weaning myself back on to it. However, like you I started to feel so much better off the drug that I didn’t want to go back on it. But I tried half a tablet now and again and each time, within an hour the nausea and headache were back.
I’ve seen my GP and she has referred me back to the hospital but so far I haven’t heard and to be honest I’m not chasing them either. For me quality of life is so important and it wasn’t until I came off it, that I realised just how bad I had been feeling. Oh to have a clear head again - it’s wonderful.The cramps have stopped, the racing brain has gone, the joints don’t ache anymore, all I need now is to get back into a sleep pattern.
I don’t know where I am menopause wise because I used to have the contraceptive injection but I’m also just 52 so I may well have gone through it without knowing.
Sorry, I have written an essay there but it is so nice to know someone else has given up too. I feel so guilty about it, which I know is silly. You have helped enormously and I don’t feel as if I’m the only person who couldn’t stick it.
Love Val xxx

post deleted

Hi all,

Ive been stressing a bit over this the last couple of days, i asked my bcn today how come i went straight onto tamox, she said as im 41, er+ had 1 x grade 2 tumour 12mm (although 20mm to get clear margins) and 1 x grade 1 tumour 8mm she wasnt sure what my margins were for that one. Had mx 10 weeks ago.

I have just read that if your tumours were bigger than 20mm then its usually chemo/tamox. Less then its just tamox. Does anyone know if this is excluding the margins.

Hope i make sense.

Take care Michelle