Hi anyone and everyone. Diagnosed with bc just over 2 weeks ago. was operated on for a wide local excision on Thursday with the removalof 5 lymph nodes so still recovering and a little wobbly but haven’t had results yet, seeing my surgeon tomorrow. In looking through the forums and some web pages I have only just realised the significance of one of my surgeons comments. From my biopsy results he was able to grade the cancer as 3 but also, and this is what I haven’t taken on board until now, it was triple negative! Presumably he was trying to let this sink in and will be awaiting questions from me tomorrow. Up to now i had been expecting and was told I would be having the op plus radiotherapy but on reading about the triple negative stuff I am shocked to hear that chemotherapy is the way forward. Am I right? Is this the only way? What will be will be I guess but I suppose I hadn’t appreciated how bad my condition was and have down played it to everyone, clearly including myself! I am now thinking that I have underestimated the whole situation. I joined the forum to ask things like “When can I start to drive?” “Can I go back to pilates classes soon?” and now I have to take on board this new information that I can’t share as I am alone in the house. Does anyone have any information that would help my understanding of the situation?
Hello Hope sorry that you have had to join us…
Sorry I’m not triple negative so don’t know all the ins and outs of it - but I’m sure some of the others will be along soon…
To be honest most people i know on here who were diagnosed with grade 3 cancer seem to have gone on to chemo…
I hope that your appointment goes well today and that you manage to ask your consultant / breast cancer nurse all your questions…
One of the things the consultant will tell you today is whether they got “clear margins” when they removed your lump - they need to have a certain amount of normal tissue around the lump when they analyse it - if not you may need to have to another op to remove more…
Also he should know whether there was any sign of cancer cells in the the lymph nodes they removed - if there was they might want to remove more…
Theresa
Hi hope,
I’m sure you’ll get lots of replies and support from this site, but I thought the following BCC publications might help at the moment:
Understanding your Pathology Report
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/91
Chemotherapy for BC
breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/109
Kind regards
Janet
facilitator
Hi, thank you for your comments. The surgeon was able to look at the tissue he removed in theatre under xray and was confident he had a clear margin but obviously the pathology report is the thing to go by. I await those results, hopefully today. Thank you Janet for the links to the info. I do have lots of BCC pamphlets already but maybe I’m missing something!I will review them, as I said I have only just picked up on the significance of the triple negative…I thought the fact that the tests were negative seemed like a good thing! How wrong can you be! Anyway onwards and upwards!
Hi Hope, and welcome. Others will know more about triple neg than me, but I gather it’s a mixed blessing - or curse, if you will. It has a higher early rate of recurrence, but once you get past about three years it has a much lower rate. So - swings and roundabouts!
Thanks for that, Susanne. Yes, I do believe that to be the case so that’s a positive. No doubt I will hear more details this evening. Like most of the people on this forum say, it’s the waiting that is difficult.
hi hope - sorry you’ve had to join us but you’re very welcome - keep us posted re the results, like theresa says most gd 3’s seem to get chemo anyway…take care ,mary x
Thank you Mary. Your comments are much appreciated. Unfortunately my appointment last night was cancelled as they didn’t have the results so I’m still waiting to hear. No news is good news my friends tell me!I am feeling so much more “normal” today and have probably overdone it but as someone used to exercise it is difficult not to do something. Does anyone know about use of the Powerplate at this stage of my treatment? This is day 6 after wide local excision with removal of 5 lymph nodes still awaiting full pathology report but grade 3 triple negative cancer. Obviously it’s important to stay strong, which I am and I went to a Pilates class this morning taking care with my underarm wound and it was fine (I am an advanced Pilates girl!)but in the absence of further information I feel I could do some low level powerplate stuff which may well aid any lymphatic drainage. It’s difficult to find someone with the knowledge of both the powerplate and cancer who is prepared to comment. I certainly don’t want to stimulate the cancer cells! Anyone have an idea? Lee x
Dear Hope
You might find it helpful to speak to one of our trained staff on our free helpline. It is open 9-5 Monday to Friday and 9-2 Saturday on 0808 800 6000.
Best wishes
Annabel
Dear hope I am triple negative grade 2 and 2cm-clear margins,clear lymph nodes.I was dx Oct 2006 and currently fne.I had wle,chemo and rads.You will almost certainly have chemo for a G3 tripneg but it wont be as bad as you fear.I am around till saturday then away for a week so shout if I can help.
Love Valxx
Thank you Annabel, good idea.
Dear Val,
your reassuring comments are much appreciated and I am glad you are doing so well and with luck so will I. I understand now that chemo is not as bad as I was imagining it to be…no alternative anyway so juat need to get on with it. Still waiting for my post op results anyway so all a bit premature…no news is good news!
Many thanks,
Lee
p.s. internet problems have delayed me in posting this, hopefully it works this time!
Still waiting for results. Have a new appointment for Monday morning. It’s hard not knowing and trying to be upbeat for everyone. I feel quite alone with it all, which of course I am ultimately. oh well, off to make a cottage pie for supper.
Lee x
Lee, I know what you mean about wanting to exercise. I was the same after my wle/lymph node sampling. I’m not sure if it’s the same thing with this sort of surgery, but 2 years ago I had shoulder surgery and was told no powerplate for a year. That may be different for this sort of op, but I would say you should certainly give it more time.
Take care.
Sal x
Hi Sal,
glad you understand. If you’re used to being very active then this enforced lack of it is difficult. You are also quite right that it’s a bit early to be doing it. Being me I used a powerplate, only gently, on day 5 after the op and then did a pilates class the next morning,no weights or anything and tried to be sensible about the arm movements. Anyway I now have a haemotoma in the axilla and maybe it would have happened anyway but I’m annoyed at myself.
Maybe it was the food shopping after the class that did it! We do have to eat though!
I just find it very, very difficult to adjust my life to this new challenge and can’t help feeling that I’m whingeing if I say I can’t do something. Clearly I have issues that I have to come to terms with!
I did email powerplate and they came back very quickly saying that while they haven’t researched breast cancer in particular they advised not to use it while there was any malignancy present and to be very wary about its use if any lymph nodes are involved. So that’s me told!
take care
Lee x
I’m going to try again. The whole thing froze when I tried to post earlier. I’ll copy it this time, just in case.
Lee, don’t be too quick to try and get back to normal. I walked for the first 4 weeks. I’m lucky in that I live very close to the downs and so I could get a good strenuous walk very easily. Then I started to run a bit, but it takes time to get your fitness back. Our bodies are working hard recovering from the trauma of the surgery, so be kind to yourself. I’ve been struggling a bit over the last month with tamoxifen induced fatigue, which I’ve found very difficult, but this week I eased up a bit and I have to admit I feel better for it. When you’re used to exercising, you’re used to pushing yourself and that’s a habit that’s hard to break. Start listening to your body and accept that you might have to slow down for a bit. It won’t be forever, but you do need to give yourself a chance to heal.
I think we all have “issues”. Don’t worry about wingeing - we’ve all done it and that’s what’s great about this forum - there’s always someone there to listen and who knows where we’re coming from.
Good luck with your appointment on Monday and let us know how you get on.
Sal x
Dear Sal,
thanks for the support. We do push ourselves a bit much don’t we? I do walks too as I have two dogs and live in the Surrey Hills so have fantastic walks around me…if rather challenging sometimes!
I will try to be more relaxed!!
Just off to see if my chickens have laid more eggs this morning as I started a cake only to find I’m too short as used too many for the pancakes and cookies. Not that there is any sign of a teenager yet. My hens are all going broody and I have to fight them for any available eggs!
Have a good Sunday.
love
Lee x