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Did anyone else have lymph nodes removed with mastectomy?

29 REPLIES 29
rosiefff
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Hi Sharon
I am having several weeks between ops. I asked my BC nurse to have second op a.s.a.p but was told i needed to recover some what from the first + the fact that the tumor & lymph was remove the c. would not do much in a few weeks? Hope this helps!

I was recently dx in late Jan and had a WLE + SNB(2cm,grade 3+sml dcis, ER+ Her2-) early Feb. I am going for 2nd surgery in 2wks for, hopefully, clearer margins and LN clearance as 1 of the 2 nodes were positive(can't really understand why i need them all out)?
Chemo is planned 3-4wks after surgery followed by rads & tamoxifen(why can't i just get my ovaries taken away as my c is oestogen receptive)?
My scars after 4wks have healed well but i am left with a very sensitive nipple in which i cannot bear clothes/anything touching me. It is stopping me from the getting out and about & every step or bump is agony and i walk around most of the time like the 'Hunchback of Notre Dame' and it doesn't seem to be easing!
If this does not go, i would consider having a mastectomy at my next surgery rather than being left like this! Sorry for not being more positive but i find this all rather new and scary! Please help?

Rosie_Womble
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Hi both

My consultant explained that they now take the minimum possible number of lymph nodes in order to get the best result along with the lowest risk of Lymphoedema (which by all accounts is a pretty horrible condition). So in my case they took six nodes, only one of which was cancerous. They are now going to start me on chemo to do the 'belt and braces' bit and zap anything that has managed to get away.

My op was on 12 Feb, and yes I'm still a bit sore and have not yet regained full movement of the relevant shoulder - it is improving day by day though, thanks to the physio exercises. If yours isn't responding I'd ring and have a chat with your BC nurse.

Hope this helps,
regards
Rosie the Womble

maggie55
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Hi Zoe,
I had mastectomy 6 weeks ago today 19/01/09 and still have slight twinges and small swelling around armpit so it is still very early days for you, keep up the excercises they really help. I think on average it is about 6-8 weeks, the prothesis nurse told me not to make a appointment with her before them as she would see me.

Best wishes
Maggie

zoehart
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

hi. I'm new here. i had letf mastectomy and 12 cancerous lymph nodes reomved on 17th feb 2009. I'm still in alot of pain and cannot raise hand above head. Need to have radiotherapy in 3 weeks. Are you still in pain and swollen?

ogardner
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

I had a lumpectomy in my right breast at the end of October 2007, I was told it was a very small lump. I was then told by the consultant that they had found signs of more tumours during the operation and needed to have a mastectomy, these were apparently scattered tumours and they would need to eliminate further tumours in my left breast as it was normal for these to be spread over both breasts. I had a mastectomy of the right breast in December 2007 and was informed just before going into the operating theatre that there were signs of cancer on the left side and they would do a deep core biopsy - this showed LCIS. I had a mastectomy of the left breast on 19th February 2009, they didn't remove any nodes as I was told there was no need but reading through the comments, I am starting to worry that they should have had removed some to check if nothing else.
Ols

mollyjoemax
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Hi
I also had widespread DCIS all high grade and I had sentinel node biopsy which thank goodness was clear. One patch was also in the upper and outer quadrant of my breast so I think thats why I had SNB.

faith11
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

hi horsemad or any body else this question can help or try to help. hi there i am 2 week post op from masectomy and reconstruction i had 2 large areas of dcis thats why i had a masectomy i had a snb where they took a few of my lymph nodes while under for the masectomy they told me it was due to being 2 large areas of dcis they wanted to check the lymph nodes due to more areas or widespread dcis more chance of it invading plus i had a very swollen breast and they said given my age 26 its normally bc they see not dcis luckly for me my lymph nodes were clear and no invasion all dcis. every body is different but if you have dcis widespread they seem to check the lymph nodes which is good at least you know they are checking you thourgh the thing is you have different grades for dcis as well and if your high like mine was its means its more chance of it invading well this what i was told i have every faith they know what they are doing everybodys cancer is different but i belive they know when to check the lymph nodes and when not my consultat did say its very unlikely to spread to the lymph nodes with dcis normally it has the ability to go to the lymph nodes when it has invaded any wayi do hope this helps im only reeling from what i have been told my self best of luck xxxx

Horsemad
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

They must think mine has spread then even though only showing 2 small areas on mamo

Guest user
Not applicable

Re: Did anyone else have lymph nodes removed with mastectomy?

Hi,my BCN told me that DCIS is none invasive and is contained in the ducts and has not yet developed the ability to spread so the nodes would not have been infected and would not need to be removed.I had DCIS and IDC(invasive ductal cancer).It all gets a bit confusing does'nt it.

love mellx

ForumMember
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

I guess there are no definitive protocols for any treatments, including DCIS. I had DCIS and had no nodes removed. This was because the area was small and no invasive cancer suspected. If the area is widespread, they will take nodes to make sure. The variations for DCIS must be numerous, so there will be no one size fits all treatment. I believe that my particular DCIS has a very high chance of being cured. This is not to say I may be very unlucky and it returns or I may get another primary tumour, but I am happy at the moment.

Horsemad
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

A lot of people diagnosed initially with DCIS seem to have lymph nodes that are involved, which if this is supposed to be pre cancerous seems strange. When diagnosed first with DCIS I was told nothing to worry about, it means it hasnet spread and very early and treatable. Now Im getting different signals, although saying treatable does mean anything does it, they dont say curable !

SuzanneP
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Hi Xinte,

Well the good news is that you haven't got to suffer the two weeks of waiting. I'm so sorry though - I know the results aren't what you wanted to hear but at least you know now. Like you say - what a stinker! Maybe your surgeon had the results rushed through because he could see how anxious you were about it or because he could definitely see something amiss and wanted to get you started on treatment as soon as possible.

What is going to happen next in your treatment?...or do you have to wait two weeks for them to send you an appointment (LOL).

Suze

PS I have just seen your other post so realise you won't be seeing your oncologist just yet. I hope you can stay strong as it does sound like a rocky road ahead but it is good that a couple of replies have been posted that show that you do come out the other side. Take good care of yourself.

xinte
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

I did get preliminary results through last night, not sure why these were so quick, 11 out of 27 nodes infected, 1 x72mm and 2 x 40mm tumours,what a stinker!

SuzanneP
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Xinte,

It does sound quite poor that your surgeon told you that in such an offhand manner considering you now have to wait two weeks to find out for sure.

Why don't you telephone and speak to one of the Breast Cancer Care nurses on this site and see if they can talk you through your concerns. I hope I don't upset you by saying this but I don't think a professional would make a comment like this unless they are pretty certain about the outcome and I'm sure there are times when experienced surgeons can tell purely from looking at the specimen. If he used the word 'infected' though perhaps he was referring to exactly that - some kind of infection rather than cancer? (I don't know but just passing on my thoughts).

I hope you can keep your thoughts occupied for the next two weeks so that you cope with getting through this hard time and I'm keeping my fingers crossed for you.

xinte
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

I do know how you feel, i had my mastectomy and full node clearance 8 days ago, after the op the surgeon told me all the nodes looked infected, i thought it was a pretty irresponsible thing to say as he cant really know for sure by just looking at them surely? Got another two weeks to go waiting for results, and like you, my mind does constantly drift to bad thoughts, I wish he hadnt said anything, at least I would have two weeks of not worrying like this.

SuzanneP
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

HI Sharon

I'm really sorry to hear your nodes were shown to be cancerous and really feel for you. Waiting for results is such an awful time isn't it where your emotions are up one minute and down the next? No-one can understand if they haven't been there.

At least you feel better for expressing your worries which is maybe something you need to do rather than try and be strong and hold things together. You aren't full of doom and gloom at all - you are being realistic about the possibility and I think that is perhaps better than being totally optimistic and not even considering that it could have travelled elsewhere. Just a thought but are there any support groups in your area where people can meet and discuss their situations and help each other? I don't know whether that is something that would help you or whether waiting time for results is just something people have to cope with.

My best wishes to you for your surgery next week and hope you have the best possible outcome.

ForumMember
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

I had wle for dcis in February and no nodes out. I asked at the time and was told there was no need because cancer was insitu. I think it must depend on who is doing treatment, exactly what type, how widespread etc etc. I some ways I wish they had taken nodes for peace of mind.

BessieBoo
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Hi everyone, I had a double mastectomy on 23rd July with SNB, and four nodes out one side and 3 the other, does it mean if you have nodes out that you may get lymphoedema? What can you do not to get it?

I have at last taken my first table Arimedex today - after looking at them with fear for a week!! Also got the letter today to start radiotherapy on 5th September at precisley 1336!!

So hopefully the last of it!!

xx

sharon2
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Hi I had a mastectomy on june 25th due to DCIS and had 4 nodes removed. Unfortunatley or fortunately depending on how you look at it I go in next week(22nd) for a 2nd op to remove the remaining nodes and those 4 showed to be cancerous. Can't say I looking forward to it but am prepared for the drains,pain etc. What I am dreading most and this is beginning to make me have very low moments is the results. What if (there is 8 weeks between the 2 ops) the cancer has gone through all my lymph nodes and taken a journey else where!! Sorry to be full of doom and gloom but feel a little better having actually put it down.
Hope you are all doing ok.
Sharon xx

bubbly
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

yeah me too 20 removed all clear

alemap
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

I had a mastectomy 14th July, 20 lymph nodes removed, 17 had cancer cells. So it is normal I think.

maxinebev
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

I had a double mast and immediate recon in June. Had DCIS in both boobs. My lymph nodes were hurting under both arms on and off for 6 months before the op. They refused to do a sentinal node biopsy and said with none invasive DCIS this is not appropriate. Some lymph nodes came away during the mastectomies. 3 in one arm and 5 in the other. They were all clear and they have now discharged me from the cancer unit. I was still worriedand wondered how they knew that the cancer hadntspread to the remaining lymph nodes. I rang the breast nurse last week. She explained that they dont normally take any lymph nodes out with DCIS. The histology showed the DCIS had not spread out of my ducts, even though it was high grade in the one boob.

Hope this is useful.Take care.

Max xx

ForumMember
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

My mum had some removed for testing during her op last Thursday.

J

ForumMember
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

I had a WLE with guide wire on Monday and my surgeon took all the lymph nodes under my armpit, the BC nurse said it's his usual practice. Won't know if or how many affected til 2 weeks when I get pathology results.
Fiona x

LindaH
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Same here, 12 nodes removed (they must want to go for a nice round figure) all clear.

Some Oncol's take nodes, some don't, I always think to take them is best.

Linda x

flaxhigh
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Thanks everyone - that's cleared it up in my mind. So long as I wasn't the only one to have them removed!
Best to you all
L x

Bernie
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

I too had a sentinal node biopsy with my first WLE in November 05, where about half a dozen nodes were taken out, two of which later proved to have metastatic her2+++ bc cells in them. The WLE was followed by mastectomy wiht immediate recon in January 06 to remove widespread, high grade DCIS as the margins from the WLE were not clear. I have never regretted accepting any of this surgery as I feel it's given me the best chance of remaining cancer free.

If you have any questions like this, it's a good idea to write them down and go armed with them to your next appointment with your consultant surgeon or oncologist.

Good luck!

ForumMember
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Hi,

I had lymph node clearance with dcis and mastectomy.....12 removed and 3 of those involved.

Sheana

Humbug
Member

Re: Did anyone else have lymph nodes removed with mastectomy?

Hi L
yes I had nodes removed with dcis and mastectomy it is just to make sure it has not spread.

Kx

flaxhigh
Member

Did anyone else have lymph nodes removed with mastectomy?

Hi there,
I had a mastectomy a few months ago and now questions seem to be popping into my head left right and centre! I have just read that lymph nodes are not normally taken out when DCIS is diagnosed and a mastectomy done. Has anyone else had lymph nodes taken out?
Any replies would be GREATLY appreciated.
L x