having had a lumpectomy 10 days ago, l have today found out that 16 out of 18 glands are infected, l was devastated to hear this news, l also have to go back into hospital, as a day patient as they say the margin they took away was not as they would have liked, seems there is less than a 1% margin of pre cancerous cells that they will remove.
Is there anyone out there that has the same problem, suppose l need support, as we all do
Love
Sandra
Hi Sandra
I can understand your worries about this. I am in a similar position in that I had a SNB and lumpectomy. A number of my nodes were enlarged so they took 10 out (which is high for a SNB) and 7 of those were infected with cancer. Also like you I didnt have clear margins and my breast was felt to be ‘unstable’ and i was advised that a mastectomy and full anxillary clearence was needed. I was completely devestated by this news and all sorts of things were going through my mind.
However, I had this Operation three weeks ago (today). I had the results last week and within the rest of my breast they found another tumour 4cm! (making the total tumour 9cm) and they took another 14 nodes out but only found 2 with cancer. So whilst it sounds horrible its best to get rid of all the cancer from your breast, in respect of nodes I had a total of 9 out of 24 infected, but it appears if you have any nodes infected you will probably have to have Chemo anyhow (even 1). The worry for me was that the higher the number of nodes infected the more chance of it spreading elsewhere.
I have had a CT scan which was clear and I am now awaiting my Chemo/radiotheropy treatment plan and will start Chemo after easter. The other main consideration is the grade of your cancer which they should know from the pathology report and again this is taken into account as part of your treatment plan
So hang in there, get the surgery over and then you can move forward on the next phase, which should get rid of any stray cells that may be lurking.
good luck
x
Hi
Dont know if it helps but I had a mastectomy in Jan 2009 and found out (after being told it was highly unlikely any nodes were infected)
that 19/23 were and my margins were microscopic. Like you, I was devastated and worried sick. The hospital quickly arranged bone and cat scans which fortunately proved negative. I had chemo 3x fec and 3x tax followed by intense radiotherapy and now i am on tamoxofen.
A year later, I am back at work full time (I am a school teacher)
and although i cant claim to feel perfect, I am reasonably fit and well most of the time now. I wont pretend the last year has been easy but there is lots of support on this website and tips on how to cope with chemo, rads etc… Most of it tried and tested.
Hope I have helped you in some way.
Linda
Thank you for your support, your feedbacks are of great comfort, at the moment l have the feeling l should be putting my life in order, that sounds as though l am giving up, but l really am not, just such a big shock, and good to know l can survive, and carry on with my life, as you have
Lots of hugs to you
Sandra
Dear Sandra
I haven’t much time tonight but I wanted to give you my support. I had 15 lymph nodes with cancer and I’m still here five years on. You will get there.
I hope your treatment goes well.
Jeannie
Thank you for taking the time jeannie, it sounded so terrible when he said 16! it was a terrible shock, the long wait from one appointment to another is awful, l hope l don’t have a long wait to have my second operation, too much waiting!
Love
Sandra
Hi. I had 16 out of 22 pos so I presume it can be “the so called normal”
My only advice at this moment, take one day at a time and embrace it, feel that day like you know you never felt i before…
Be positive, you know all treatment is doable…
Love Teresa xxx
Hi Teresa,
Thank you for your support, you know what it is like, when you have bad news… the world comes to an end…for a short while!
But tomorrow is another day, and l will take your advice and enjoy that day, leave the worrying for another day!
Love and Hugs
Sandra x
Hi All
never had the margins issue as large 8cm tumour always meant i was having mast. although SNB turned into full node clearance with 15/20 involved. This was Dec 2005 and at present no evidence, have had ups and downs with crap prognosis but still living and classed as healthy.
Debs
Hi Debs
So pleased to read you are ‘still living and classed as healthy’ you obviously have a good sense of humour!
They said my lump was 2.5cm
I thought l was up for the night, but l am ready for bed now (l hope) feel drained!
So sleep tight all.
Tomorrow is another day!
Love
Sandra xxx
hi I came out of hospial yesterday after having more nodes removed, my first op was 3 weeks ago when i had my lump removed and a SNB when i went for my results they said i needed more nodes removed, it is the wait again for the results which seems to take forever. Waiting now for the nurse to come, no even sure if she will come as its Sunday.
This is the worst thing ever having to have the two ops just as my wounds were healing.
Hi Emily and welcome to the BCC forums.
I have posted a link below to our new resource pack which you may find helpful, it has been designed for those newly diagnosed, just click on the link to access the order form. You can also order more information publications on the same page by clicking on the links on the same page under the ‘quick order list’.
If you would like to speak to someone in confidence please do call our helpline on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2, our team of specialist nurses and trained helpliners can offer you further support and information. Hope this helps.
Best wishes
Lucy
Hi Emily
Like you I had two ops, first a lumpectomy and SNB and then as there were no clear margins and nodes infected had mastectomy and full clearence. I know exactly how you feel. I felt that I was going backwards and all the progress and healing was wasted - Its also very dibilitating having sugery twice in four weeks and it does take its toll. My last surgery was 4 weeks ago now - I had the drain removed after 6 days which was a relief (the nurse came every day even sunday) and wound is healing nicely. My arm is still a bit stiff and don’t have full movement but every day it gets a bit looser and I even did a bit of gardening over the weekend (very gently of course).
I have tried to give myself things to do every day - I also have had the support of friends/family who have ‘taken me out’ to various places, garden centres, parks, national trust houses, shopping, luncheon dates and just general visits. The time has flown past and I am now ‘looking forward’ to my Chemo starting very shortly. I think the time just after surgery is the worst - I think you feel down anyhow and your body is bruised and sore and it really hits you that you have got this horrid disease. I know people say this (and they said it to me too) it will get better and your wound will heal again and your energy will come back. Focus on getting yourself strong ready for your next treatment.
Take Care
xx
Hi Emily,
It sometimes seems as though it is one step forward and two steps backwards!
sorry to hear you had to have more nodes removed, l am going into hospital on the 14th to have more of a margin taken! already taken all my nodes, it is the waiting that gets to you, seems as though l am never going to get to the chemo stage at this rate! xxx
Saffronseed,
Seems as though this backwards and forwards is quite common!
Yes like you l also did some gardening (very gentle!!) must be the sun coming out!
It is four weeks since l had my lumpectomy, l am still having the fluid drained off from under my arm every week, are you? I
will be a few weeks behind you when my chemo starts, due to my other op! but l thought l was told the fluid under the arm must have finished draining before chemo starts! Mine still fills up! have to have it drained the day before my op.
May have missunderstood, not much sinks in at the moment!
Love
Sandra xx
Hi Sandra, No I have been very lucky in that I have had no problems after both ops and no significant build up of fluid or having to have anything drained. I had a bit of a ‘swelling’ on my side above where the drain was. but the consultant and BCN said that it was fine and would just go down on its own - and it has done just that. It still is numb all around my armpit and breast area but I can live with that.
I know what you mean about the waiting - I was all ready for the next stage and more surgery was a real set back for me and I did get very down and upset about it. However time does go by and I have tried to get myself as fit as I can (I have even lost a bit of weight) with all the exercise and walking I have been doing. I feel ready (if you ever can be) now for the Chemo. I have my Onc appt tomorrow and hopefully it will be all systems go without any more setbacks… and I will know exactly what my treatment will be and when I will start. I just want to start it as soon as possible so it can hopefully blast anything lurking into oblivian.
Hi Saffronseed,
I think perhaps your consultant and BCN are right to leave it to settle down, l have thought if they leave it, surely if would settle down, my thoughts are the more you remove the more it will fill up, just needs time to settle, like us
Oh good luck with your Onc tomorrow, luckly you! and 100% with you with regards to ‘blasting anything lurking into oblivian’
Sandra xxx
Hi Saffronseed and Sandra
Thankyou both for your kind words. Sorry i did not go on line before only had a very bad day yesterday everything got me down. It didn’t help that the nurse never came to see me on Sunday and then i had to keep ringing the Breast Care Nurses yesterday to see what was happening, eventually a commuity nurse came yesterday at 4pm and made me feel like i was putting her out, she said she wouldn’t need to come again. Thankfully i have an appointment on Thursday to get my results and have the drain taken out, then on to the next stage of treatment hopefully.
Good luck Sandra for your op on the 14th and hope your onc appoint went ok saffronseed.
Take Care xxx
Hi
Onc appt went Ok, although I felt far more emotional about it than I thought I would. As I said since my surgery I have tried to focus on getting strong and well - although Breast Cancer has never been far from the forefront on my mind I have been able to get back to some normality and try and see the big picture of life with Breast Cancer just being a part of it! - seeing the Onc seemed to bring it all back, going over the stages in my journey and discussing results etc made me feel very vunerable and very raw again (I am not sure why that is?). So I too have had a couple of bad days, near to tears all the time and seem to be dwelling on the negatives - so I do know emphasise with you feeling down. It does seem to me that this is how its going to be for the coming months and maybe even years - and maybe we do have to accept that at times we will feel very down about it all.
What I keep going over in my mind is that even though I have to go through all the Chemo, Rads and Hormone theropy there is no guarantee that I will be ‘ok’ and the cancer will be ‘cured’ and I suppose in my mind and heart that is what I am yearning for - I somehow need get my head around all this.
I have been lucky in that I have had good experiences with all the medics, nurses, consultants and doctors but I really don’t think they fully understand the trauma that we are going through and whilst they deal with this everday and its their job, I think they can at times be insenstive as to how anxious we are about the whole thing and thoughtless words and actions do not help at all!
Anyway I start my Chemo next week, Weds 21st, I have to have 3 FEC and 3 Taxitere (sp?) it normally 4 and 4 but they are going to strenghen the dose to give me the same amount but in less cycles which will enable me to have radiation that bit sooner. I then have to have hormone replacement for 7 years - They have decided this plan because of the high node involvement. I will also have daily injections in between each cycle to keep my white blood cells up.
So whilst part of me is glad I am starting next week (I can’t wait to get it over with) I am now quite anxious about it all, I need to focus my mind on getting prepared for blasting those cancer cells away! So any support it doing that will be much appreciated!
Emily I hope your appt today goes well and that you get to the next stage quickly as the hanging around waiting is the worst. Once you get rid of the horrid drain you will feel a lot better in yourself (I felt my drain dragged me down physically and mentally).
Sandra I hope your seroma settles quickly so it gives you one less thing to be anxious about! I am sure your op will be fine
thinking of your both today.
Let me know how you both get on
Patricia
xx
Hi Patricia
Well that is another stage you are ‘over’ My op went ‘well’ l was home by 7.30pm just pleased to be home. Going out with the dogs for a nice walk, don’t feel sore thankfully. Have to go back on Tuesday (20th) but they said they probably would’t have the results until the following Tuesday, tooooooo much waiting!!!
The thought of seeing the onc frightens the life out of me, with so many glands involved l have this nightmare of him saying nothing can be done!! crazy woman, probably really frightened of hearing my prognosis, like you l want someone to tell me l will get through this, but still no treatment and 2+ months down the line l worry, worry, worry.
So the very best of luck for your first chemo next week, have you a wig sorted, or trying the coldcap?
Hi Emily,
If l read it right!!! you are getting your results today? Hope they are as good as they can be.
Doesn’t take much to upset us does it! we all feel as though we are the most vulnerable people in the world! Bad days, Bad days, and then hopefully a Good day, which we all need. I hope your Good day is today, let us know how things went, and hopefully you will get an appointment to see the onc. and then the REAL treatment will start
Love
Sandra xxx
Hi Sandra,
glad to hear you are ok and out and about already thats really good news and hopefully help keep your spirits up. Yes I agree although I already knew my results and prognosis hearing it again from someone else (apart from my consultant) made it that more real and frightening for me. However the regime I am having is a tough one and it is reassuring that they are doing all this for me and the Onc said quite clearly they are going for a cure! I am sure that will be the same for you.
Just because there are a high number of lymph nodes infected doesn’t necessarily mean they have/will spread elsewhere - although the risk is greater, but then it appears they ‘up’ the medication to mitigate this risk. Whilst we are all individual the stats are on ‘our side’ on this and even with a high number of nodes infeccted evidence, trials seem to indicate that the treatement they offer these days significantly increases survival rates.
I am seeing the wiggy lady on Saturday, I have an appt and my friend is coming along with me so we can chose one that is comfortable and practical as well as looking good!(hopefully). I have decided not to go for the Cold Cap. Firstly I don’t really want the extra hastle and be even more uncomfortable during treatment, but more importantly it would worry me that it means the Chemo is not getting to some places (and given the size of my tumour and node involvement) I don’t want to potentially compromise the effect of the treatement. So for me its deep breathes and acceptance that my hair will go - My hairdresser is very supportive and I will get it shaved off before it becomes clumpy etc - Just hoping it does grow back at some point!!
It does seem to be all waiting and more waiting, but I think you have to get your body fit and well and your wounds healed before you go into Chemo or I think it could impact even more on your general health - I am sure you will start your chemo very soon after you get your results (I had the Onc appt the week after to start the week after that).
~Funnily enough I am now ‘waiting’ again for Chemo to start - I have been looking at diets etc so I can try and eat as healthily as I can so support my blood count - I want to avoid any delays in my treatment. Again Whilst I really want to start, I am getting quite anxious about actually going to chemo unit and having the treatment I just hope that I stay strong and don’t start blabbering - no one likes a cry baby!!
thanks for the good wishes and I will let you know how I get on.
Emily fingers crossed for your results
patricia
x