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Full node clearance

15 REPLIES 15
Member

Re: Full node clearance

Hi Everyone.

 

What a decision to have to make. I had my full clearance plus 6 more higher up 7 weeks ago. This op came totally out of the blue. My original diagnosis was in Feb this year. Had a lumpectomy and 2 nodes removed, one clear and one very stated micro cells. Told by surgeon margins clear, not need for further surgery and onto chemo and rads. Well chemo dudbt fully work out well with lucer issues and had a ct scan in July, to he told that I had another swelling in the lymph glands in the same side. Turns out that even with 3 doses of chemo one gland had grown to 22mm in size. So 16 glands removed in total and only the one tested positive. Turns out even when you think your clear something can change so quickly and without having th ct scan we might have never found it. Xx

Member

Re: Full node clearance

Hi Hilary

 

Sorry I haven't been on for a while.  Did you make your decision?  I am starting chemo tomorrow, and to be honest I am happy with that decision.  I think I would have worried without it.

Hope you are making your way through it all

Much love

Emma xx

Member

Re: Full node clearance

Hi Laura

So glad to hear you've come through all the treatments successfully! You've been through so much and the hormone treatment is on going, but if you're a worried you're bound to have doubts about doing the right thing. 

They way I've been looking at things lately is I can worry about something that may never happen and spoil my peace of mind now, or I can try to be relaxed about it and deal with things as they happen. It's taken 62 years for me to learn this, haha! I think have sessions with the psychologist is great. I've found counselling very helpful at some tough times in my life.

I think I'm going to opt for the POSNOC trial but I'm still dithering and undecided. If I do it, I'll either have no treatment to the armpit or choose just radiotherapy. Plus rad to the breast and hormones for a long time too of course. 

Thank you for sharing. Keeping you in my prayers.

Love, Hilary xxx

 

Member

Re: Full node clearance

Hi! I’m so sorry it’s been so long since I checked on here!! 

I finished 6 rounds of chemo, 4 weeks of radiotherapy and now continue to have zoladex injections and 10 years of tamoxifen. 

I still question myself on the decision not to have the node clearance. So worried about reoccurrence, I was referred to health psychology of which I had an assessment for and start sessions next week. 

How are you all doing?? Xxx

Member

Re: Full node clearance

I am glad you have calmed down a little, I know that feeling.  It’s a rollercoaster!  It’s so good you have a good husband and family and friends, you are right though, they can’t possibly know how you feel, much as they would love to make you feel better.  I have made a friend because of all of this.  We’ve never met but we chat all the time, it’s so important to have support like that.  Please feel free to chat with me whenever you need to.  I will let you know how I get on xxx

Member

Re: Full node clearance

Hi Emma

That's it exactly! Given a leaflet and a phone number and told to make a decision! :-0

My BCN has just phoned me to see how I am as she was unable to be at my appointment yesterday. She's very matter of fact and sensible and brought me down off the ceiling! She told me how to break it down into decision making steps, starting with POSNOC so I'm going to attempt that. She also said no-one will rush me into a decision and that they would be no bad choice I could make, as all the options I had been given were good ones. 

Thank you for bring so understanding. My husband, family and friends are wonderful but it's hard for them to "get it" when they haven't experienced it. Please keep in touch Emma and let me know how you get on next week.

Love and prayers

Hilary xxx

Member

Re: Full node clearance

Hi Hilary

 

i know exactly how you feel.  When I went to see my oncologist for the first time after my op, I expected to be told a treatment plan, and I had been told by a few people that once I had that plan I would feel better, whatever it was.  Makes sense doesn’t it? You want someone to tell you your best course  of action, not be given a choice, which feels like someone has put your life in your own hands and said, I know you don’t have any medical training/knowledge but read this leaflet and get back to us!  I can assure you I was an emotional wreck after this appointment, you are not feeble or a wuss...well if you are, so am I ! Lol!  After my appointment I went to my BCN, I didn’t have an appointment, but she is brilliant and gives good hugs and plenty of reassurance.  I was worried that if I agreed to the trial and was told no chemotherapy then I might regret it later down the line.  She told me they can’t play God, and are not allowed to take any chances or take risks.  That put my mind at rest....well 90%, it’s not been 100% since my diagnosis really!  It sucks! I’m hoping to find out my treatment decision on Monday or Tuesday, not sure how I will feel about it either way.  I think it gets to a point where you have to start going with your gut feeling when you are given choices, and the end goal is to make sure you do what you feel is right for you.

 

wishing you some peace in the storm you are going through, but know that you won’t always feel like this.

 

much love 

 

Emma

xxx

Member

Re: Full node clearance

Thank you so much sugarpuff1972!

I had my WLE and SNB on 30th July and felt like my body was not my own. Getting the results yesterday, I felt I'd been handed it back with all the responsibility of getting well. 

Naively, I thought I would be told what steps would come next regarding the lymph nodes, rather than having to choose. I've been feeling very strong and positive and now I feel feeble and a wuss, unable to think straight and for the first time really emotional!

Thank you so much for sharing your experience and how and why you made your choice. I can't tell you how it's helped me to know someone is going through this too. 

Love and prayers to you for your on going treatment and recovery

Hilary xxx

Member

Re: Full node clearance

Hi Laura

I have also opted to go with Optima.  Not easy is it?  I’m not sure how I will feel either way, if they say no chemotherapy will I be stressing that I’m not throwing everything at it? But I don’t want to go through chemotherapy if it’s not necessary.  I was diagnosed at the beginning of May and had a lumpectomy on 20th June, I also had one node with microscopic traces in it.  Do you mind me asking what happened after you did the trial?  

Emma xxx

Member

Re: Full node clearance

Hello!

I am waiting to find out my treatment plan having made the tough decision to go with the Optima Trial.  I had a lumpectomy on 20th June, and I had microscopic traces in one lymph node. It is such a hard choice, on the one hand I want to throw everything at it, but also I don’t want to go through chemotherapy if it’s not needed.  My husband and I discussed it and opted for the trial as it seems results from other women were good in working out if chemotherapy wasn’t necessary.  This is what I keep trying to remind myself, it’s not that they could say, let’s see what happens if you don’t have chemotherapy....if they come back to me and say I don’t need chemotherapy, it will be because they have tested the dna of my tumour (bloody hate that word), and it’s not necessary to go through chemo as radiotherapy and tamoxifen will work without it.  It’s still a hard choice, and I am glad that at any point I can pull out of it.  

It would be so much easier if a professional could say to me “do this and it will all be fine”.

You definitely are not alone, I am taking diazepam some days to help with the stress of it all.  It’s just so crap having got on this “ride” and not knowing which way it will turn next, and when it will end! 

I hope this helps, I am thinking of you, and hope you make the choice that will make you feel better 

sending love

Emma xxx

Member

Re: Full node clearance

Hi Laurah22, I’m in a similar position to you and really struggling to make a choice. Can I ask, did you go on to have further treatment? How are you doing?

Member

Re: Full node clearance

I am so thankful I have just found this thread! I have had a WLE and sentinel node biopsy tho weeks ago and got my results yesterday. They found cancer cells in one of the three nodes.

Now I have been offered a range of lymph node treatments to choose from: no treatment, clearance surgery, radiotherapy, the POSNOC trial or the OPTIMA Study trial. I feel completely overwhelmed and am more scared about making the wrong decision than of undergoing the treatment! Thank you for helping me feel I’m not alone.

Member

Re: Full node clearance

Thanks for the replies.
I found it an impossible decision, so after a confusing week I decided to let fate decide and join the trial..... it was decided I wouldn’t have the clearance. So I meet with oncologist on Monday to discuss the next step.
My surgeon and breast care nurse said in my position they don’t know what they’d do either! She said if further nodes had been positive she would have encouraged me strongly to have it but as it was just the one she was happy with my decision to let the trial decide.
Member

Re: Full node clearance

Hi Laura
I had mx and 3 nodes removed, one positive and I was also offered the POSNOC trial. Have you been given access to information, including links to videos online which explain the trial?
If you decide to join the trial, you will be monitored very closely and there is the option to withdraw at any time.
Have you considered the option of saying yes to the trial at this stage? There is a 50% possibility that you will be randomised to the full treatment side of the trial, so you wouldn't be missing any treatments but still be a part of the trial.
Whatever randomisation you are offered, if you are not happy with the decision you can withdraw but, by saying no now, you lose the opportunity to be a part of the trial on your own terms.
I have joined the trial and have been given the no treatment option, which means I am avoiding radiotherapy to my armpit. I am very happy with this decision even though I didn't think I would be.

Good luck with your decision.
Member

Re: Full node clearance

Hi just to say I know exactly how you feel.  I had a mammoplasty where they removed 2 nodes, one was positive.  Went back for second surgery to have margins shaved and a full clearance but they forgot to do the clearance.  I am only a week post second op and will get my results on Wednesday.  Surgeon said if margins werent clear he would have to do a mastectomy and clearance at the same time.  If margins clear then should I have clearance anyway.  Like you I am terrifed of lymphodema as it is my right side and I am right handed.  Surgeon said chemo would clear any nasty cells left but bcn then said that I would have to live with not knowing.  I suppose I am worrying before I have to make decision and it may be that I dont have a choice but I just wanted you to know that you are not alone. I am dreading the thought of further surgery but I want to get this stage out of the way too so I can commence treatment.  A friend of mine who has just gone through this said she would definitely want the clearance to get it all out but I am not sure either.  She advise me to ask the surgeon what he would do if it was his wife or daughter.  Let me know what you decide.  Sorry not been much help!  Good luck with whatever your choice is. What is the POSNOC trial?  xx

Member

Full node clearance

Hi everyone, I’m struggling to make a decision, realise it has to be my own choice but any views or experices would be good....
I had a lumpectomy with 3 nodes removed, 1 tested positive. I have been offered to take part in the POSNOC trial, or not. I’ve pretty much decided not to as feel like I’d like to make the decision myself whether or not I have full clearance. I’m having chemo and radiation, surely those would kill anything left? I’m really worried about getting lymphodema, I have young children, and an active job that I love. I’m only 34. But at the same time also a bit of a worrier and would like to know they got everything out. I really don’t know what to do. I have until Thursday to make a decision.