Hi Anxious,

I am glad to hear that you have a good consultant. It makes all the difference in the world to have someone who you can discuss things openly with and, who you have total trust in.

As someone who has had 2 bouts of breast cancer in the past 10 years, I can assure you that being tearful, anxious and highly emotional are all perfectly normal at this stage. These feelings will improve as you move further down the line, complete your surgery and start treatment.

I am sorry to hear that your margins were not completely clear and, that you have to have another operation to rectify this. I shall be thinking of you on 15th July. Why worry about the invasive cells found? Be thankful that they have been found early and removed quickly. The fact that you are Herceptin negative is good news too. This means that you will benefit from Hormone therapy.

I have had a number of sentinel node biopsies and, although not pleasant, they are a lot less painful than I at first imagined. I see that Magpiemaggie has to take her hormone therapy for 10 years. This is a new protocol and, it depends upon the grade and type of breast cancer you have and, the preferences of your multidisciplinary team. I was on Tamoxifen for 1 year, then Letrozole for 6. At that stage I was told that I didn’t need to progress to the 10 years, so I stopped taking it in July 2017.

There is no problem with starting your Arimidex now. It should help to reassure you that you are now zapping any stray cells that are trying to grow. Although you are not too happy about going back to surgery again, this is the best time to do it. My surgeon and I suspect that my margins weren’t 100% clear, but my first surgeon advised me that he had realised this at the time and taken an additional slice away. As a result, I developed a second cancer in the same breast a year later. This time I had to have a double mastectomy. At least you are getting it all away in a better time frame. I am glad to hear that your mum had no further problems after she started to take Arimidex.

Sadly, I lost my mum to secondary breast cancer. That was 22 years ago and things have improved so much since then. I am glad to hear that your surgeon is only going to remove 3 lymph nodes. If they are clear, you want to keep as many as you can. I had 6 removed. This is called a first level removal. Fortunately they were all clear. I had already been through the menopause by the time I started on hormone therapy and, had to go through it all again. Although I stopped taking Letrozole 2 years ago, I still have some menopausal symptoms, but hey, I’m still her 10 years down the line.

I hope that you are equally fortunate and that your treatment works well for you. It sounds as if you have a lot to live for with your new partner and, I wish you both every joy in doing so.

Do please keep in touch and let us know how you are getting on. We are always here for you.

Kind regards,

Jolamine xx

Hi jolamine

Thank you for your reply, all you 'experienced' ladies certainly do help!  Any tips on how to stop thinking about it all and getting more positive?  I'm usually quite strong, have dealt with the end of a 40 year relationship, coped with losing my home, and finalising my divorce, but this?  I'm in pieces!  I have contacted a cbt and hypnotherapy counsellor, and may go to see her.  I think going from my consultant saying I had DCIS and not breast cancer, to finding a 4mm IDC as well as DCIS caused me more shock and confusion.  I think she should have said DCIS is pre invasive, not pre cancer, although from what I have read the general opinion is stage 0.  I guess I'm now panicking about the lymph node test, because that wasn't necessary with the DCIS diagnosis.  The goalposts seem to keep moving!  

So good to hear you're well 10 years on, long may it continue.  Certainly teaches you life is no dress rehearsal xx

No your surgeon is not your oncologist, I forgot you’ve still to get margin clearance so you won’t see your oncologist until after your op. The oncologist will help put things in perspective for you, they are keen that people move on from their diagnosis and back to living their lives. There may be some courses at the hospital for you to attend and I know some charities run ‘moving on’ courses. These courses are not my cup of tea but then I didn’t feel the need to ask for support as I was keen just to move on with my life.

For me my diagnosis was a wake up call as I had let myself go a bit in relation to weight, personal care/looks and work so I made a plan detailing what steps I needed to take to get my back to how I was 5/10 years ago. I was so focused on carrying out the steps of my plan I forgot to worry about cancer and before I knew it I had moved on.

The surgeon and team will already have an idea of what to expect from your lymph nodes and the fact that they were not removed in your first surgery suggests that they are not anticipating to find any cancer there. Removing and testing after invasive has been found is standard practise. Try not to worry x

I know what you mean about a wake up call!  I am around 2 stone overweight now, but that has been 3.5 stone in the last 10 years!  The stress of the divorce knocked 1.5 off me!  The thing I am most intent on is exercise, that is something I lack, and I have an office job!  Don''t get me wrong, I am always on the go, cleaning, working, gardening etc, but I need good hard exercise, I have read it is very good for maintaining breast health!  

I have already overhauled my diet, eating lots of fresh fruit, vegetables, lean meat and fish and only occasional red meat!  I have made a conscious decision to give up alcohol.  I never drunk loads, but liked wine, and that contains oestrogen!  I will move on with this, I have always had lots of hobbies, gardening, flower arranging (I qualified as a florist years ago), painting and craft.  My new partner and I are looking for a house out in the country and we want to travel a bit.  He is Irish, and we may get a holiday home in Ireland.  So there is lots for me to move on for.  I need my *** kicked I guess, wallowing in self pity.  There are others a lot worse off than me, with little or no support.  

Thanks again for your help x

Hi Anxious,

As Magpiemaggie has said, your consultant and your oncologist are two different people. Your consultant is usually your surgeon and your oncologist oversees your after care. Both of these people work with a multidisciplinary team who decide between themselves what are the best surgical and treatment options specifically for you. Your consultant will usually hold these meetings on a weekly basis. There is a heck of a lot of new terminology for you to get to grips with, so it’s no wonder that you’re confused.

I am glad to hear that some good came out of your divorce. Losing 1 and a half stones was a great achievement. I put on a tremendous amount of weight after taking Tamoxifen and Letrozole (over 6 stone). In the past 2 years I have had to work hard to try and get this down again. So far I have managed to reduce 5 stones, but I continue to try and reduce more. It’s just getting harder and slower.

The best advice I can give you to try and distract yourself from the wait, is to keep yourself as busy as possible. This doesn’t all have to be hard work, participate in leisure activity too. This helps to keep you away from the internet, which you should try and avoid at all costs.

I wouldn’t worry about your lymph node test. As far as I know, this is protocol where there is any invasive tissue found. It is better to test them now to rule out any spread, rather than doing nothing and later finding that the lymph nodes are involved.

It is confusing when the goalposts keep moving, but this happens a lot with cancer. This is why so many consultants are reluctant to give any indication before they get the results of tests back and, can be certain of what we are facing.

Try to enjoy your weekend.

Kind regards,

Jolamine xx

Thanks Jolamine, 

I am going back to my part time job next week, which is very busy, so that will be a good distraction.  I am going to try and concentrate on my crafts too.  I can't keep up this self pity, it's not helping!  You're right about the Internet, I could qualify as an oncologist soon, I have read that much and scared myself senseless! 

Sharon x

Well done to you both on your weight loss, I’m exercising like crazy but the middle age spread will not shift - you must let me know how you’ve done it, I’m running out of ideas. I have noticed more weight since taking tamoxifen so perhaps that’s the culprit but should still be able to lose it - I think?

I have been put on arimidex, but only taken 3, so can't blame that yet! Divorce and stress for the last 2 years has helped weight loss, but considering 3 years ago I had a clear mammogram, I wonder if the stress caused this?!  Will never know, but stress is not good for you, especially long term! 

Hi Sharon,

I'm glad to hear that you are going back to work next week. When it is so busy, this should be a great distraction.

What crafts  ae you interested in? You will find that getting back to normality should be a great help, but whatever you do, try and stay away from the internet.

Kind regards,

Jolamine xx

Hi Magpiemaggie,

I wasn't fit enough to join an ordinary exercise class, but joined a rehabilitation class which my GP referred me to. It was hard going at first, but I persisted for the 10 weeks and, was then referred to an ordinary exercise class. At the same time I joined a 'Way to go class', run by the NHS. Here I was weighed every week and had my waist measured every other week. After this we discussed all matters related to food, then we spent an hour doing what exercises we could do. Sadly, I eventually had to give up both of these classes, as my back was too sore to do the exercises.

I then got great support from my practice nurse, who weighed me monthly, until she retired. Unfortunately, I have not had the same support from my new practice nurse, but am still trying to watch my diet and, exercise as much as I can at home.

When I was taking Tamoxifen and Letrozole I didn't notice the increase in weight until I had piled it all on. If you are aware of it earlier, it is worth trying to reduce your weight before it gets out of control.

I wish you every success with this.

Kind regards,

Jolamine xx