Hi,
I’ve been reading the forums for a few days now, having been diagnose about 3 weeks ago with Invasive Ductal Carcinoma. I found a lump in early Dec and went straight to the doctor. I was told it ‘didn’t feel worrying’, but a core biopsy showed it was cancer. I also had a core biopsy on my one enlarged node, which also came back positive. I’ve been told the lump is about 1.3cm, grade II, ER+, HER2- and they have recommended lumpectomy with node clearance, chemo, rads and Tamoxifen.
I am 37 and have four children, three of whom are under 8, and a very active lifestyle including an allotment. So the node clearance scares me to death - how do I take care of young children, pets, an allotment and all the other things I enjoy whilst ‘protecting’ my dominant arm???
My oncology team have offered me the slightly less usual option of having my chemo first to see if it can shrink my affected node, and if that works performing a sentinal node biopsy at the time of my lumpectomy. The idea being that if no cancer is found in the node then, it can be assumed my other nodes are also clear, thus avoiding a full node clearance.
Has anyone else had a similar experience? Did it work? My number one priority is staying alive for as long as possible, but quality of life is a very close second.
Thanks in advance for any replies, and best of luck to everyone, especially those who have recently been diagnosed as well.
Carrie x
Hi Carrie
Firstly, welcome to the Forums, I’m sure you’ll find them a great source of information and support.
I thought you might be interested in our Resources Pack for those newly diagnosed, so here’s the link to the page where it can be ordered:
We also have lots of other factsheets and resources which you might find helpful. Here’s the link to our publications page:
www2.breastcancercare.org.uk/publications
I hope you find this useful.
Best wishes
Louise
Facilitator
Hi Carrie.
Dx Nov 2010 2.5cm grade 3 lump.ER+ Her- MX and SNB. 6x FECT 100 chemo, 15 rads and tamoxifen.
I’m from the Oxford area and my surgeon believes full node clearance isn’t always necessary now as there is the same outcome for SNB with radiotherapy. I had 2 positive nodes out of the 6 taken and I have full use of my arm with no problems so far. You are right to question the outcome. I work with a lady with lymphodoema and it is a real problem for her. (She’s older than you though). Ask lots of questions and speak to as many experts as you can. Good luck with it all.:)x
I was diagnosed in Nov 2010 with a grade 3 lump and an enlarged node which they weren’t sure about. Because of the lump size I had chemo first with a view to shrinking it. My surgeon was also of the view that SNB is the way forward so when I had surgery (a WLE) I had SNB which was tested whilst I was under and as it was clear no further surgery was necessary. I went on to have rads and have just finished Herceptin for 12 months and my first year check was fine.
I have had no problems with arm movement whatsoever. If you are offered this treatment I would go for it.
sam
Hi Carrie,
I had neoadjuvant chemo and had 2 known positive nodes prior to chemo. My MRI following chemo showed no enlarged lymph nodes so I was offered the option of having SNB with my op rather than the full clearance that used to be the norm with positive lymph nodes. I ummed and ahed and did lots of research and asked lots of questions on here - but I couldn’t find anyone who’d done this - so I went with the full clearance in the end. For me, it was the right thing to do as one lymph node still had cancer in it so I would have ended up with a full clearance anyway (the SNB was going to be tested while I was under and then my surgeon was going to make the call as to full clearance or not).
My surgeon thinks what you have been offered will be the way forward in order to reduce lymphoedema cases. It’s just difficult to make the decision when there’s little research around or people to talk to who’ve gone down this route.
Sorry I couldn’t be of more help!!
x
Thanks so much for your replies, ladies!
Sam, your experience is so great to hear - really pleased it worked out for you.
Sandytoes, your reply is VERY helpful! My surgeon put it forward as an option, but did say he has reservations (I guess because it’s such a new technique). When you think SNB is really quite a new option, I guess this could take another 2 or 3 years to be used more often.
Janipi, I’m glad you’ve had no problems with your arm. Can I ask…did your 6 tested nodes constitute a ‘full node clearance’ or did they just take a small sample?
I did come across this article that discusses some research which seems to suggest there is little difference in outcome for SNB with adjuvant treatment or FNC: nytimes.com/2011/02/09/health/research/09breast.html?_r=2
We’ll see how the chemo goes and I imagine I’ll discuss it in full later on when I’m closer to surgery.
Thanks again for taking the time to respond, and all the best!
Carrie x
Carrie,
My thread from before my op is below - in case you wanted some more opinions! Also, my surgeon emailed me some papers on the subject which I can forward to you if you PM me your email address.
X
Carrie. My surgeon just took the 6 nodes nearest the cancer to test. The 2 nearest ones had cancer cells in them. (This was done at the same time as my MX.) The chemo and radiotherapy zapped any other stray cells that could have been lurking. He assured me that current research is showing that there is no difference in outcome. It all happened so quickly, 10 days from dx so I had no time to think about it all. It is a good thing though to explore all the possibilities and do what feels right for you. :)x
Hi Carrie & Sandytoes,
This is interesting. I was due to have a further lumpectomy and full clearance, (from snb 1/5 had cancer)on the 8th Feb. When I came round in recovery, I was told they hadn’t taken any nodes! I was very pleased but shocked they’d taken such a last minute decision, and for what reason?
I was told that Consultant reviewed my results and decided that risks outweighed the beenfits of full clearance. Since then, the helpline on this site and my bc nurse has said it is a good thing and that it is the current way of thinking but I’m yet to have the conversation with my Consultant to see why they didn;t plan that in the first place.
Thank you both for your research as I understand it more now, and Sandytoes i’d be interested in those papers. I;m still waiting to see what furtther treatment is involved for me and of course have to wait for clear margins. So it is interesting that you are being given the choice.
Best wishes to you,
Sassy x
I’ve found this thread really interesting as I was never offered the SNB with chemo and I am surprised at how different everyones treatment is.
My core biopsies showed Grade 3 IDC and positive node involvement. But at that stage they can’t possibly know how many nodes ? The CT scan showed “marginally” enlarged node and also mentioned some others being slightly enlarged - so not sure if CT results help them decide - but many woman don’t seem to even have a CT.
I had WLE last week and full node clearance. I wasn’t given an option on the node clearance but weirdly I was told I’d have a mastectomy but the surgeon changed her mind about that and only did WLE as felt it was in a very good location to get a clear margin.
I think I was so overjoyed to keep my boob that didn’t think about the nodes but am now also worried about how the clearance will affect my arm as it’s my dominate arm.
I didn’t read ANYTHING about node clearance until I was sitting in the bed after the surgery. They give you leaflets with exercises etc but I just didn’t find the time to look at them till the day after. So was a bit shocked to realise that Lymphodema can happen years later. I thought I’d wake up and as long as I did the exercise all would be fine. However I have a friend that had full node clearance (even though she only had 1 node that came back positive and it only showed “traces” of cancer). It’s been a year since her surgery now and she uses the arm normally but didn’t keep doing the exercises so is now having to have physio to get more movement in it. She doesn’t have any signs of swelling though.
I’ve only been home a couple of days and she visited me and was really shocked to see how much movement I have in my arm already and I am covering it in Aqueous cream constantly - so I expect to have pretty normal usage back and will just be extra careful not to overload this arm/hand with shopping and start switching hoovering and ironing etc to the other arm eventually.
I will be interested to find out next week how many nodes were affected and if it’s only a couple I am going to be a bit annoyed they did a full clearance as I am having chemo anyway - and that might of nuked them, but it does give you peace of mind that nothing is slowly spreading through those nodes whilst waiting for chemo etc.
I think every case is different and whatever you decide you will manage any knock on side effects and adjust accordingly. My friend does a special needs school run twice a day (mini bus of kids) and looks after her baby grandson every afternoon - as well as working nights as a Midwife Assistant. Her Full Node Clearance hasn’t affected her ability to care for children or do her housework etc. The ONLY restriction is that she won’t lift very heavy items or push patients in beds - as this involves gripping with the hand for a long period of time and you should avoid gripping something heavy for too long (so put shopping down regularly and give hands a good shake and wiggle fingers).
Good Luck with your decision and might see you on the Chemo thread soon.
I have been in the same situation as you, and it’s all worked well. I was lucky in that I didn’t need chemo (100% oestrogen positive, so I take anastrozole for 5 years) The surgery is not too ghastly, and if you are fit/healthy and keep your shoulders mobile/loose before your op I expect you will bounce back quickly. Radio was tiring but it kicked in a week or two after the treatment had finished so I just did a few things, had a rest, then carried on with the next thing. Digging the allotment may be off the agenda for a while…
Hope this helps, and good luck with everything.