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Further surgery needed to remove lymph nodes, unhappy

22 REPLIES 22
abon
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Hi Christurner, I am in exact situation as you, had lymphodyma, 1 out of 3 nods had 4 mm of cancer because of my IC can't have chemo so I have been taking tamoxifen since Aug 1st, had the second surgery on Aug 21st which not sure how many nods where removed but I'm guessing about 20 more, will find out about the results on Sept 3rd  on Sept 1 will learn about how many radiation sessions I will need. I was very scared and not sure why they are doing this to me but I was told this is the best in my case so I had no other choice but to beleive in Cross Cancer Dr's in Edmonton, now its all about more waiting games which kills mre more than the cancer itself. From my experience, sometimes you have to let go and wish for the best, I do hope everything goes well for you & I do pray that they find no more cancer.

christurner
Member

Re: Further surgery needed to remove lymph nodes, unhappy


@25569 wrote:
Have grade 2 invasive ductal cancer. Had lumpectomy to remove 13mm tumour and sentinel node removal. Have just found out that 1 out of 5 of the removed nodes had micro mets in it.
Nurse informed me that further surgery needed to remove other lymph glands. Now awaiting date.
Reading here that full lymph gland removal may not be needed and realise higher risk of lyphodema problems. If micro mets there then doesn't that mean cancer has already spread? Surely chemo would be better now?
If micro mets found in other lymph nodes then what else can they take away? Feeling down.


Hi, in 2009 I had a lumpectomy and a second op to remove lymph nodes, followed by 6 sessions of chemo and 5 weeks radio , treatment lasted for apprx 7 months , thankfully all clear now , so stop felling down tell yourself thank goodness it was found and be positive about the outcome, I know you will have good and bad days that's normal, but try to be as  positive as you can , and good luck : 

 

christurner
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Hi, in 2009 I had a lumpectomy and a second op to remove lymph nodes, followed by 6 sessions of chemo and 5 weeks radio , treatment lasted for apprx 7 months , thankfully all clear now , so stop felling down tell yourself thank goodness it was found and be positive about the outcome, I know you will have good and bad days that's normal, but try to be as  positive as you can , and good luck : 

 

poemsgalore
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Just a small point, and one people probably don't really want to hear. I've heard of people who had RADS have a recurrence in the same area as their first primary - I have met someone who this happened to. I have never heard of anyone who had ANC getting a recurrence.

Poemsgalore xx
Naturegirl15
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Thanks MMM
I hath ink I am doing fine.
Wish you all the best with keeping it in that jar!
jan
millymolly_m
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Hope you're doing OK Jan. I had ANC in December after macro mets were fond in 2/2 SNB. They took another 21 nodes and found nothing more. Somehow, that made me feel easier knowing it hadn't gone right into my lymph system. I now feel that my cancer is in a jar and the chemo has put the lid on it. Am still waiting for results from other side (see my profile for the long boring story!) but I think of it as better out than in.
Good luck, keep up the excesses, you 'll do brilliantly!
MMM
Naturegirl15
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Now back home and surprised how little pain I have. Glad I opted for the operation. Was lead to believe that it would be more painful than the lumpectomy.
no problems so far. Just need to wait for results and advice on next hurdle.
Naturegirl15
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Thank you everyone for your comments, thoughts, research and shared experiences.
I am having ANC on Monday 29th July.
My daughter (8months pregnant) has also been admitted to another nearby hospital with some worrying symptoms, which I hope can be sorted out. At least this stops me feeling sorry for myself. Hope to get home and recover enough to be of use for the arrival of our next grandchild.
Wishing everyone who has commented all the best in there ongoing battles with breast cancer. X
Cybele
Member

Re: Further surgery needed to remove lymph nodes, unhappy

I also had grade 2 invasive, WLE, 2.8mm tumour, ER PR pos, HERneg, not epxecting to have chemo, just RT, but they found 1 micromet in sentinel lymph node. My surgeon said because of micromet some further treatment advisable , and offered me the choice of

a) chemo
b) full axillary clearance
c) radiotherapy to armpit.

I am a swimmer, and it is v important to me to remain as physically active as possible, and not to lose physical capacity in my shoulder and arm, and so did a lot ofresearch on the possible effects of surgery on the lymph nodes, lymphoedema, its life time risks, and its effect on people's quality of life - once acquired, it can't be cured. Figures vary, and it's really hard to find anything accurate, but it seems true that a significant minority of women who have ANC will at some point get lymphoedema and this may impact quite severely on their quality of life. This can happen at any time for the rest of your life.

Although I had sworn for the last 20 years I would never have chemo, because my husband died at the age of 32, from a chemo related lung infection while having chemo for leukaemia, and suffered hideously from the chemo beforehand - so this was no easy decision - I chose in the end to have chemo, on the basis that 18 weeks of chemo would be horrible but was a one off, whilst the risk of lympphoedema, and the fear of it, would be with me for ever. It wasn't a risk I wanted to take.
I did chemo from Dec -April, and it was unspeakably horrible, but now it's done, and the memory is starting to fade.

Ironically, given my fear of chemo, my radiotherapy, for 3 weeks which finished in mid June has actually caused me much greater physical problems - very bad burns, and now lung problems.

Everyone says that radiotherapy is a walk in the park after chemo, and it's less immediately physically challenging, but it can inflict quite a lot of damage on you, the possibility of which I really didn't take seriously enough.

Poems Galore, I think you were very wise to avoid RT , with your lung problems, given that you had a choice - unfortunately I didn't have a choice, as you can't have a WLE and save your breast WITHOUT having radiotherapy as well, becaue there's something like a 50% risk of local reoccurrence without radiotherapy. And I would rather have taken the risk of lung problems than lose my breast, so i would have done it anyway.

However, it just didn't really dawn on me that lung problems were likely to be an immediate risk. I already have weak lungs - asthma - but that only manifests as bad coughs very occasionally, and it never occurred to me that RT would make things go ballistic.

I've been coughing incessantly and painfully since I finished RT in mid June - have been on high doses steroids for 4 weeks, and it's just not responding, so now I've got to have a CAT scan to see what the hell is goimg on in there.

I've been totally freaked out by reading on here about people diagnosed about the same time as me last year, and also just finished treatment, who have recently been diagnosed with lung mets after getting coughs that won't go away...

I had assumed it was just the effects of the cancer treatment - chemo can also hurt your lungs, I have discovered - on my sub-standard lungs, but now I'm starting to wonder...

Anyway, sorry, have got right off topic, but I'm a feeling a little stressed about all of this right now.
To return to the micromets and lymph node question, the problem here is that they have only recently developed the technology to identify micromets, so it's all a relatively new issue, and there is just not the body of research literature that there is on most aspects of breast cancer and its treatment.

This being the situation, I think it's really important that surgeons should make peole aware that there are differing opinions on the subject, and different possible courses of treatment and LET THE PATIENT DECIDE rather than imposing their own - particularly in a situation where more surgery and long term physical effects may be involved.

My own surgeon was terrific - he laid out the options, said if it was his wife he woud recommend she went for chemo, but left it up to me to decide.
I still had this huge resistance to chemo AT ALL, leaving the surgery issues aside, but what what finally convinced me was a research study on micromets in the Netherlands, which the surgeon gave me . There is no standard protocol there on micromets and chemo - some women have it,, some don't .

The study showed that for women with early stage invasive cancer like mine (and yours), and micromets, over 5 years there was a 10% survival advantage for the women who chose to have chemo over the women who didn't.

This is only one study, but quite a large one, and it convinced me to do it. The oncologist calculated that for me the extra survival probability was more like 7 -8% and that seemed significant enough to go for it.

I'm very glad I didn't have the ANC, and I'm glad I did the chemo, vile though it was.

So my message would be consider chemo - it worked for me in a closely analagous situation, and I'm very happy with the choice that I made.
And given that you seem to feel much the same way as I did about more surgery, please don't let them push you into it unless you're absolutely sure that it 's the best option for you, and that you are comfortable with it. It's your body, and your life, and your sugeon does not have to live the consequences...

It's so easy to forget, in these horrible circumstances, and all this pressure, that you always have a choice, you can always say no to any kind oftreatment, or elect to postpone it until you are feeling ready for it.
You can just say no, or 'no - WAIT'.

I postponed both my chemo and RT, and taking the whole thing a bit slower allowed me more mental and physical recovery time between each stage of the treatment, which was badly needed. The medics sometimes forget just how close we are to losing our minds in all this..

A final point - even if you do have a complete node clearance, I am not convinced that provides any guarantee at all of no reoccurrence - THERE ARE NO GUARANTEES . Cancer cells don't just travel through the lymph nodes, and after nearly a year of cancer treatment and reading and hearing about other people's experiences of it, it seems to me that anyone who thinks any particular treatment will necessarily have cracked it is living in a fool's paradise (however psychologically helpful that might be).

I know that despite surgery, chemo and radiotherapy, and a very good prognosis (91% chance of disease free survival for 5 years, yada yada yada), there may very well still be a Circulating Tumour Cell with my name on it happily splishing about in my bloodstream right now and , if so, once it's landed, then I'm basically toast. And it may have landed already...

That's just how it is, and I now accept that.

EDIT: sorry, reading this through it occurs to me that I have rather confused things by writing on here about my current lung problems which are, I should add HIGHLY UNLIKELY to be a recurrence of the cancer already and therefore not relevant to the ANC/not ANC debate.

I have pre-existing sproadic lung problems and the most likely explanation is simply radiation pneumonitis, ie that the radiotherapy has inflamed my already weak lungs.Usually it doesn't happen so fast, but I guess if you're weak in that area already, you're more vulnerable. It is something that will clear up eventually, with the steroids, but it may be a matter of months rather than weeks and i should perhaps be being more patient, however insane it is driving me.

Hopefully the CAT scan will confirm this shortly.
poemsgalore
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Hi
It is very confusing when different surgeons have different opinions. After all, we are depending on them to do their best to us. Micro mets in lymph nodes just means they are doing their job, not that it has spread elsewhere, but the affected ones have to be removed.
My situation was 3cm ductal invasive, grade 3, ER +, PR +, HER2 -. I had MX with snb. three nodes removed only one with micromets. I was originally told I would have rads and then Anastrazole. Then I was offered chemo as I was grade 3. So I had chemo, finding out three quarters of the way through that I had vascular invasion. I asked what my chance of recurrence was without rads and was told less than 20% in chest area, 50% in lymph nodes. But they also told me I could have ANC if that happened. So, no rads, I'm now on Anastrazole and not having ANC unless I need it in the future.
The reason I opted for no rads, was because I have a lung disease. Even the radiographer said she was worried about giving me rads in my situation.
samjs
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Do you know what ladies I am feeling so fed up with all this stuff. All the things we are told etc. On a bit of a downer right now, just want it all to go away. Feel like I am on the heavy end of the seesaw that has hit the floor, somebody please jump n teh other side to help me up a bit.
XXX
Lols
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Hi, I agree with em, I've recently had wle and ANC, as fine needle biopsy confirmed lymph node involvement. Results 4/25 lymph involved, I was advised ANC and had it done 18 th June, had 2 nd wle on Monday. It's for me just some reassurance I've given kit my all. I'm beingvreligiouscwith exercise and today have noticed big improvement. Event for ct scan today and had to keep arms over head, radiologist said that I did we'll some ant manage that is think exercise is key after anC. I've a sunburn feeling in back of arm but less so in last week, under arm completely numb, but all bearable, doable, I know that risk of lymphodema but glad they took IT out. Good luck whatever choice you make ju x
spookymoo
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Hi All, I too have had ANC (x2 with micromets ) (Feb 2013) and x 2 failed WLEs, resulting in an MX and DIEP recon in May. The blood supply to my flap failed (twice!) and I ended up having to have a vein graft from my arm - unfortunately the same side as my clearance. I have subsequently developed mild lymphodema (although to be honest I think I already had it prior to the MX surgery). I now wear a compression sleeve and am trying to manage it as best as I can. Although I unfortunately have developed lymphodema, I am glad I had all the nodes out. I had chemo prior to surgery and my tumour did not respond as well as we had hoped (I am very ER+) and if I didn't have the nodes out I know I would just be worrying and fretting. It is a pain having lymphodema and the surgery wasn't pleasant, but I have been unlucky all the way through, and knew that if I didn't have ANC it would turn out to be another unlucky thing for me! Every one is different and just because I developed lymphodema doesn't mean to say the next person would (personally I was suprised - I am not overweight and I did my post-opexercises religously! But I guess the additional surgery really complicated things). I have just been unlucky. But I would rather not have the worry - "what if" - of the cancer still lurking in there. It would have been too much of a risk for me. I want the thing gone - so whatever it takes! Best wishes with whatever you decide to do. Em x
tracyld
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Morning everyone,
I had the full clearance of my nodes after my mx in July 2010. I know the feeling when the Consultant tells you it has spread and that you need to go back in for further surgery, we are devastated BUT this is thee best way forward I feel. Like the others have said you are cutting the Cancer out with hopefully no more rogue cells. I went on to have FEC T Chemo which was very doable. I did however choose not to have Radiotherapy as I had done a lot of research on this area. To date I do not suffer from Lymphodema but I do try and be very careful especially when gardening.
Sending you positive vibes . Love Tracy xxx
chascat
Member

Re: Further surgery needed to remove lymph nodes, unhappy

I had a micromet in my sentinal node and went on to have a full clearance. My surgeon was of the opinion that they know an ANC works, they don't know the long term risks of leaving the nodes in, so I went with the clearance, that was 18 months ago and i've been fine, also you need to remember that radiotherapy to the axilla can cause lymphoedema too. I also had chemo for a small grade 2 IDC.

HJU63
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Hi, I had WLE and SNB last year (April 2012) and showed 1/3 affected (macro) I then went on to have ANC which gave a result of 1/11 affected. Don't regret decision to have ANC, glad the cancer was cut out, had chemo and rads later in 2012. 1 year on feeling ok, no problems with my arm but am aware that I need to take care. If you feel strongly about not having the ANC then talk it over with your Onc and get some data about your particular diagnosis. Best wishes, Helen

samjs
Member

Re: Further surgery needed to remove lymph nodes, unhappy

I have micromets in one node and my consultant said he would suggest rads not surgery. It looks like different consultants across the country do different things.
busyrachel
Member

Re: Further surgery needed to remove lymph nodes, unhappy

I had 3 nodes removed when I had snb last summer, and a few cancerous cells were found in one. My surgeon said there was now evidence that having radiotherapy could be as effective as further surgery, especially as he didn't think anymore would be affected but hie recommended full removal. I had 8 more removed at the same time as mx, they were all clear and I have had no problems with lymphoedema.
busyrachel
Member

Re: Further surgery needed to remove lymph nodes, unhappy

I had 3 nodes removed when I had snb last summer, and a few cancerous cells were found in one. My surgeon said there was now evidence that having radiotherapy could be as effective as further surgery, especially as he didn't think anymore would be affected but hie recommended full removal. I had 8 more removed at the same time as mx, they were all clear and I have had no problems with lymphoedema.
Naturegirl15
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Thanks Amanda. Hope you are up and out in the sun. It is good to find others in t he same boat even if we would rather not be there at all.
Amandamagnus
Member

Re: Further surgery needed to remove lymph nodes, unhappy

So sorry about your situation. I was in similar - 1/5 micromet. Had ANC and results last week. Everyone surprised and disappointed that 2 more nodes affected. BCN repeatedly said cutting it out is best cure...I felt devastated after I had so much reassurance that probably no more nodes would be affected, But she kept saying 'they have gone, they are in a path lab, they can't harm you now'. I try to feel lucky, as there is a school of thought to consider one micromet as a negative result and don't go back to do further surgery. My arm isn't too bad. Not sure if this helps...Amanda
Sam_BCC
Member

Re: Further surgery needed to remove lymph nodes, unhappy

Hi Jan7070

I’m sorry to read that you are having a difficult time at the moment. I’m sure the users of this site will be along to support you soon.

In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes Sam, BCC Facilitator

Naturegirl15
Member

Further surgery needed to remove lymph nodes, unhappy

Have grade 2 invasive ductal cancer. Had lumpectomy to remove 13mm tumour and sentinel node removal. Have just found out that 1 out of 5 of the removed nodes had micro mets in it.
Nurse informed me that further surgery needed to remove other lymph glands. Now awaiting date.
Reading here that full lymph gland removal may not be needed and realise higher risk of lyphodema problems. If micro mets there then doesn't that mean cancer has already spread? Surely chemo would be better now?
If micro mets found in other lymph nodes then what else can they take away? Feeling down.