Oh I have a dilemma and spent last night seriously stressing about it.
When I had my mastectomy I had a sentinel node biopsy and they took 5 lymph nodes - 1 of which had the little blighter in, so I have been told that I will need to have an axilliary clearance after my chemo. This can be done with surgery or radiotherapy, I don’t have to make the decision for a few months but I am already tying myself in knots and getting upset about it. OK I’m scared of the dreaded L – lymphoedema! – and of needing extra time off to recover.
Now my ignorant, non scientific heart says, its only 1 node out of about 20 or in fact 1 in 5 - what are the chances? Why do we have to do anything about it? It’s OK my sensible head says because it’s still a risk and you don't want to have gone through surgery, chemo and radio only for there to be a rogue cell hiding. But it amazes me that with all the billions spent on cancer research that there isn't a more reliable way of screening your lymphatic system. I know that it would be foolish not to have a total clearance, so I just have to decide how.
I had said that I didn’t want more surgery, it would be sods law for the lymph nodes to be removed only for them all to be clear; so I was veering toward having them dealt with as part of my radiotherapy but there’s a slightly higher risk of the L word and scar tissue and god know what else. If I went the radio route I could be back at work sooner, so it would have less financial impact as I would have longer in half pay. Even as I type this, I can’t believe I am basing my choice of treatment on a financial factor especially as I can cope with an extra month’s absence.
That leaves surgery, plus recovery period etc. I didn’t ask many questions when I was diagnosed, in hindsight I probably should have asked more, but was just relieved it would be gone. However the reality of surgery and what you are left with makes me want to know exactly how they would perform the clearance, what are the risks, what scar tissue will there be, what will the scar look like – frankly lovely as my surgeon was I wouldn’t give him 10 out of 10 for needlework, I don’t want more of the same on my underarm.
So what has caused my distress and fear? Gardening!!!! Yes you read correctly gardening. I have had a good week,probably done too much but I have done some of the things I was doing before my op, not as fast, but I have done them, without gloves and loved it!. I can be and am a little blasé about looking after my hands, because I heal well and I still have ¾ of my lymph nodes – but once they are gone, I will have to be more careful; I’ll have to wear rubber gloves and gardening glove for all jobs, no more feeling the soil, I’ll become addicted to hand cream; I’ll have to be careful what I lift, worse I’ll have to ask for help!! I feel really resentful that these are yet more adjustments that I have to make, on top of losing a breast and my cleavage and making sure my tops cover what’s left of my chest. I don’t want to have to make more adjustments, I don’t want to be hear and making this decision. I want to get out of my pram and scream and howl.
Having gone through everything else on this journey with very little fear, I now feel scared, not about the op but about the 1 in 8 chance of lymphoedema when support for it appears to be so patchy.
I have the clinic and blood tests tomorrow ready for cycle 6 on Wed, so better draft some question for the consultant.
Ok enough whinging from me, getting back in my pram now.
Love to all
Carol xx
FormerMember
oh carol i so want to give you abig big hug i can feel your pain & it must be hard for you all i can tell you is my expirence wasn't so bad.i had sentinel node biopsy after my first op which was a lumpectomy the sentinel nodes where clear but the lumpectomy showed my tumour to be 7& a half centimetres so my surgeon wasn't happy & told me that sometimes they can miss the sentinel nodes[ very rare ] & be higher up so she said she wanted to do a clearence of the i like you was very worried about every thing you mention also my job is as a carer .also since the biopsy i had a burning pain all the time on the inside of my right arm it was just settling when she wanted to do it again nightmare . funny thing was though the pain had gone commpletly afterwards i had my clearence same time as my mastectomy so she went through that area rather than giving me a new scar . i haven't had lymphodema i may just be one of the lucky ones plus i have had a burn from my oven on that arm it took longer than normal to heal but did so with no problems. i don't lift things that are heavy get someone else to do it the one thing though that i have found difficult is putting duvet covers on . i can't tell you what to do love but its not been to bad & this is your health you are talking about i am sure you will make the right decision for you . take care carol i am thing about you with lots of love & the BIGGEST HUG i can send you love theresa xxxxxx
Last June I had a lumpdectomy, 15 lymph nodes removed, (The sentinal node was positive,) and had a small amount of swelling and discomfort, but Im doing good now. My breast they took the lump out of is still bigger and redder than the other, and seems to swell a bit after I work too hard, but I am lifting normaly, and I am very active in my garden, and I think my being active has helped a lot with all of this. I have a large dog I walk most days for half an hour, and I am a carer and have been working ok. Hope this helps you cope, but remember everyone is different, so good luck with it. Hugs, Pam.
What a dilemma when we have to make these decisions with no knowledge or experience.
The first time round for me I didnt have the mastectomy, just the chemo and radiotherapy to include the axilla. By the time the chemo finished a 5cm tumour had disappeared. Next time round - same breast my surgeon asked me about excision of the lymph nodes and added there would be a high risk of lymphodema because I had already had radiotherapy to the site. I asked him what his thoughts were, and he said not to have the lymph nodes removed. So I went with that. But the second mastectomy for a 7cm tumour in the other breast I left to them to decide while I was under. Sentinel node stuff wasnt known about then. They removed all the lymph nodes - it had spread right through. But that one was 9 years ago and I have never had lymphodema - so again one of the lucky ones.
Carole...you know what I think....the important thing is that you do what is right for you. You will know what is right for you when you come to make the decision....
