Another question.

I went to see the physio yesterday, per op, and she told me I had to do all these exercises.  I don’t have a problem with that, but I was also told about all the things I need to do to prevent oedema.  Now, if I am only having 2 nodes removed, how likely is it that I will have lymphodema? 

How many people have been told they will have 2 removed, and they remove more? 

How many people are told none will be removed, but then they remove 2?

Hi Pecan

I only had one node out and they still told me all the stuff about avoiding lymphoedema, even though there was a very small risk of it. Since I didn’t fancy getting it, I observed all the instructions about not lifting heavy weights for months with that arm, ensuring I disinfected any cuts and insect bites on that arm etc etc., just to be on the safe side even though it did seem a bit OTT. 7 months on and I am lifting heavy bags and heaving furniture about as I ever did, so the restrictions are temporary I think, but lymphoedema sounds a nasty and maybe permanent thing to have, so best play safe and avoid any risk, however small.

Re your other question, I think they always take at least one node out, never none, with WLE and sometimes 2 if there is more than one sentinel node. I think they can tell what they need to remove by where the blue dye goes. I wouldn’t be too concerned if they take out more than one, since apparently we’ve got heaps of them, more than enough to deal with any future infections and stuff.

The exercises are crucial to regaining mobility pre-rads and I still do them even now occasionally just as a general tone-up. All the best for your speedy recovery. xxxxxxx

Hi Cathy,
No, I did not have a drain & it was all very straightforward. I felt pretty much being able to carry on as normal after a couple of days, apart form some soreness. My bc was very small at 7mms.
My husband asked the surgeon & bcn about why rads is recommended as the tumour was removed with good margins & the response was the 60% figure - I supppose it depends what benchmark is used. They also said that it helps to deal with any rogue cells that may be left behind.
Well, I was happy with that!

Just wanted to add a small contribution re whether everyone has lymph nodes sampled. If your diagnosis is DCIS, they don’t usually do anything to your lymph nodes. I had no dye or anything else, and definitely no lymph nodes sampled. The reason is that DCIS is cancer of the cells lining the ducts, which have not become invasive, that is they haven’t spread beyond the duct itself so can’t have spread into the lymph nodes.

The downside is, when it spreads, it spreads along the ducts so can travel a long way without being detected, since it doesn’t usually form a lump.

Hi ladies, lots of different issues raised here, I’ll try to give my perspective on as many as possible!

I had 8cm and 2cm IDC and they removed all the lymph nodes they could find as biopsy showed cancer had spread. They took 27 in total and 26 of them were affected! I had a mastectomy and they took lymph nodes through that incision so no additional scar, but I think that played a part in restricted movement. Diagnosed sept 14, mastectomy with implant, chemo, rads, finished rads in July 15. I also had dissolvable internal stitches and glue on the wound, plus 2 drains - went home with one drain, what a pain they are! Not painfully but awkward and get in the way!

I did my exercises religiously and was back doing yoga after 3 weeks which I did 4/5 times a week throughout chemo. The medical team were amazed at my range of movement, being fit before was definitely an advantage.

I was warned about lymphodema risk, but find myself carrying shopping in the wrong hand as I forget! My operated side is weaker and I have to adapt my exercises accordingly but exercise and movement is very important to assist the lymphatic system to do its job. I am also very careful about cuts and carry antiseptic wipes and cream with me. I have had various cuts and scrapes (got a puppy shortly after rads!) but so far so good.

I was tempted to turn down radiotherapy partly because of horror stories I’d read but also because I couldn’t bear the two hour round trip everyday. Onc persuaded me that it was essential because of my tumour size and nodes, he arranged transport for me so that driving wasn’t an issue and I had a nice little doze on the daily journeys! They gave me E45 cream to apply liberally to the rad site and I had strict instructions to cover up in the sun, not to swim in sea or public pool for a couple of weeks after. That was great as it gave me a valid reason not to go in the freezing Cornish sea with my kids the following week!

I am going to have a DIEP reconstruction at the end of August and had an abdominal MRA scan a couple of days ago - this is to look at the blood vessels they need to use for the DIEP. Did I read somewhere that you’re having a DIEP? So this might be what your ultrasound is for?

Anyway, hope I’ve addressed most of the issues you’ve raised! Please feel free to contact me for any more detail.