Please let it be good news.

From a fairly mild beginning, my breast cancer story has just escalated.
I ended up with needing a second surgery last week, as the margins from the partial mastectomy Nov 23 were not clear.
The tumour was much bigger than imaging suggested, having microscopic infiltrations which spanned more than the 8cm they took out.

So I returned for a total mastectomy Wednesday of last week. The surgeon ended up taking “a little” of the pectoral muscle, as the original resection had been quite deep, and she wanted to go deeper to get clear margins. This information quite frankly scares the poo out of me!

Due mostly to the depth of the surgery, I think, it has been a really painful week, and I have lost quite a bit of the range of motion I worked so hard at following my previous surgery which involved axillary node dissection. This hurts far more :frowning:

Tomorrow (Thursday) I see my surgeon again, and I am hoping she will tell me “margins all clear!” I am also hoping she will be able to tell me my er/pr and HER-2 status, as we didn’t yet get that info from the first surgery. And THEN I am hoping to be able to move on to the next phase of treatment!!

I heard today of a trial for HER-2 positive patients, which sounds really promising. The nurse also said she thought you didn’t lose your hair with this new treatment! (not that that bothers me too too much, but it would be a bonus!

Hi Morwena

Its sounds like you’re having a pretty tough time at the moment. I’m sure some the other users of this site will be along to support you soon.

In the meantime maybe it would help to talk things through with a member of our helpline staff, who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes Sam, BCC Facilitator

Morwena so sorry you are having a rough time everything is such a worry and it never seems to come one thing at a time. I am sure you are getting really good care and they are looking after you well and this is just a set back that is temporary and you can soon get on with the treatment side of it and feel that you are getting over a few hurdles.

Thinking of you today and know how you feel the waiting for results is just he worst thing ever.

I have onc app tomorrow for results of bone scan and ct and dreading it. Also snb results from surgery Tues if they are all back - bet they won’t be then chemo 31st and MX after

Sending love and hugs


Morwena so sorry you are having a rough time
Thinking of you today the waiting for results is horrible hoping you get good news love and hugs from ANN.G

Hi Morwenna
Hope your appt today to get your results today went ok and that you are starting to feel a bit better physically. As the others have said, I think most of us have found it is easier to cope when you know the next stage of treatment and can get on with it bit by bit.
This might make you feel a little less anxious - I was dx with 2 tumours + DCIS so also a total area of over 8cm, and had a mastectomy and node clearance, margins were still very close. That was in Feb 2011, but since then have had chemo and rads and now on Tamoxifen, am back at work, swimming regularly and feeling pretty good, with check-ups all ok so far. I was so scared at the beginning, and I know there are no guarantees, but I have found you do adjust and the anxiety does go into the background - and also that there are lots of people round there for you to talk things through - including the fantastic support on this forum!
Sending you a big hug

Thank you everyone for ypur kind comments.
The news is GOOD! All margins are healthy, with no invasion into the pectoral muscle/chest wall.

The cancer is, as I thought, er/pr and her-2 negative, so I will have to have a fairly aggressive clout of chemotherapy, followed by some rad therapy.

However, just at this minute, I am just overwhelmed by the thought that I don’t have to be thinking about dying right now! I may have lost a breast, but I’m still me, still alive!! I even got my drain out today, so it’s all good! :slight_smile:

I guess I get to post on the triple negative board now?!? :wink:

Hi Morwenna - glad to hear you’ve had a bit of good news. I was in a similar situation to you as I started off with a WLE and axillary clearance but then got a bad histology report and had to have a mx. I also had worked hard to get my range of movement in my arm and then struggled following the mx. It will take time but just keep on with the exercises. Things will improve.

I’m also TN. Have had chemo and rads. This time last year I’d had my 1st chemo and had my 2nd between Christmas and New Year. As everyone says, it is doable. You’ll find lots of help and advice on the Forum with tips on how to get through. Just hang in there and before long you’ll be onto the recovery part.

Best wishes for Christmas and for a healthier second part of 2013.

Hi Flori,
Thanks for your reply! May I ask … how long were you on chemo (how many weeks/months/sessions), and how long/how many sessions of rads?. Did you have irradiation to the axilla? If so, did that affect your arm/shoulder range/function? Did the radiation start right away after the chemo? What chemo did you have?

Sorry about bombarding you with questions: I do realise that I might not be exactly the same, but I am looking for “ball-park” figures to know what is likely.
I do hate not knowing what is going to happen! :frowning:

Hi morwenna
im not quite like you, I did know from the beginning (march 2012) I would need mx. I too had 3 tumours largest 3.5cm plus large area of dcsi (had to do 3 ultra sounds and piece it together). Had 6/18 nodes involved and some vascular invasion, which they said was not be expected when nodes involved. I am also tn. I just wanted to let you know I had chemo (before surgery) I had fec-t…I went onto the Artemis trial, this involved having the tax part of chemo first with another drug called Avastin…you have 3 tax then 1 fec with avastin then the last 2 fec on its own. It is weird and a bit scary but totally doable, just drink lots of water and keep an eye on your temp, if temp goes past 37.5 ring the helpline. They will give you lots of anti sickness meds, which as it turned out I didn’t need. I did lose my hair, but to be honest it wasn’t that bad, got some nice scarves, hats and a wig. I finished chemo in August had my mx and the n had 3 weeks of rads 5 days a week. They zapped my supraclavicular and chest wall. Again it wasn’t too bad, slapped loads of aqueous cream on and skin was ok and no major tiredness. Start showering now in aqueous cream it helps get your skin ready for the rads. I have now been finished for 4 weeks and so far feel ok. I’m going on the moving forward classes, the free fitness classes and I’m going to see the counsellor (just to get my head around the loss of boob, the nightmare of the roller coaster of a year and again to help lock this memory away in a distant part of my brain)
good luck with your journey and see you at the other end x

Thanks Chatty Katty

Hi Morwenna - I had 6 cycles of FEC-T - 3 FEC and 3 T (taxotere, also known as Docetaxel), so it was a total of 4 months because they do chemo every 21 days. I didn’t know it was unusual to have vascular invasion when you have node involvement but that’s what I had, along with satellite tumours, extra nodal extension of one of the 5 affected nodes and some DCIS as well as the IDC. We all react differently to chemo so I don’t want to say much about it as you may be like Chatty Katty and not have any problems. All I will say is that, eventually, I got onto cyclizine tablets which stopped the sickness. But hopefully the ones they give initially will prevent the sickness and nausea. I was given information about FEC-T that’s written by Macmillan so I dare say you’ll be given the same or similar. It tells you what to do and what to expect. They’ll give you a book to write down any side effects and they’ll monitor your bloods, for me they did the day before chemo and 10 days after. When my bloods were getting too low they gave me Neulasta injections to take home and I injected myself - it’s very simple, just into the fat on my tummy and really surprisingly painless. I never thought I’d manage it but I did.

My hair began to come out in big clumps on day 15 after the first of the FEC. My scalp felt a bit sore for a couple of days prior to that, so I realised something was about to happen. I would advise getting a sleep cap as my head felt quite icy at night (mind you, I don’t have central heating and live in a rather chilly old house). Do drink plenty of water and I would suggest small amounts of food - I found eventually that eating took away some of the ill feeling so it encouraged me to keep eating, even getting up in the middle of the night to eat, but that meant I put on weight while on chemo. I wish I’d researched that first. People kept telling me not to worry as I needed the weight to get through but I’m struggling to shift it now, which gets me down a bit. There are foods that should be avoided and chemo affects your taste buds so it’s a case of finding what you can still taste. There are threads on the Forum about such things, and also join in with one where people are going through the same treatments at the same time so you can share tips and support each other. Another thing to mention is your nails can take a real hammering so I was advised to eat jelly as the gelatine helps them and also use a nail hardener/moisturiser. Oh, and moisturise your skin as it gets very dry. Try to book early onto a ‘Look Good, Feel Better’ day. They’re a real tonic and they’ll tell you how to look after your skin. You can also send off for a DVD with a book on how to look after skin, about hats, wigs and when your hair grows back.

As for rads, they said you have to leave it at least 3 weeks after chemo before starting them. I had rads to chest and axilla but it didn’t affect my arm movement. I had 15 sessions, 5 days per week (they didn’t do weekends or bank holidays but I think my hospital may in future as they sent out a questionnaire asking how people felt about weekends etc) but found that really easy going and it’s so quick, you’re in and out in just a few minutes each time. The longest bit is when they mark you up ready - they do little tatooed dots so they can line up the machine accurately each time. As Chatty Katty says, slap on plenty of aqueous cream - I was advised to use E45. I was also advised to wear loose fitting cotton tops during rads so as not to irritate my skin. I had no problems at all from rads.

Try to pamper yourself over Christmas and get yourself fit ready for chemo. During chemo try to get out for short walks each day - I found the only time I gave in and laid around all day I felt far worse than when I got up and out. On bad days I managed 2 or 3 10 minute walks, on good days I could do 3 miles or even did a 10 mile bike ride after the 5th chemo. Although, the Docetaxel and Neulasta injections can cause joint pain so I wouldn’t advise forcing yourself to exercise if your body is really saying no - I tried that once and it set me back a couple of days.

Anyway, one step at a time. Just concentrate on the chemo for now. I realise I’ve really rambled so I’ve highlighted some of the bits to particularly take note of. You’ll soon get into the swing of things and although it will seem a long time while you’re going through it, all of a sudden it’s done and you start to recover.

Best wishes.

Thanks Flori for your very detailed post.
Although it sounds grim I am always one for finding out what to expect before it happens if possible. For me, fore-warned is definitely fore-armed!!
I had a phone call today to let me know my oncology consult appt is Jan 2, so that was quite quick really.

For now I am going to do my best to enjoy Christmas and my son’s wedding on the 29th, and not be a party-pooper!!

ps. re exercise: I am trying to get out for walks, but today had a high of minus 18 degrees C!! I went to a mall and wandered around for an hour or so picking up a few presents. Not sure I got much fresh air!! My arm was sure achy by the time I got home!

That’s great that you have your son’s wedding to look forward to. It’s good to have a nice distraction.

I’m like you, I like to know and it allows you to be organised.

Now you’ve mentioned the minus 18 degrees - another thing to watch out for with chemo is that you need to wrap up against the cold, and that includes your face. I was warned that …mind’s gone blank and can’t think of the word…oh yes, and chemo brain is another issue!..anyway, it can affect the nerves in your extremities and so you don’t quite realise how cold it is and it can be harmful to your skin. On really cold days I kept covered up and when cycling wore a balaclava onto which I fitted extra fleece over my nose and cheeks to protect them - who cares what I looked like!

Good to know about the cold! Thanks!! :slight_smile:

Me again. Just thought of another really important thing, not something I would normally discuss but I wish I’d realised a bit sooner how important it was. Constipation…there, I’ve said it…the nurses did mention it and said to get some medication if necessary. Well I would suggest making sure you have some at the ready in case you do need them. It makes you feel REALLY ill when you’re on chemo. A couple of simple tablets for about a week after a dose of chemo then kept me much better for the rest.