Hi there

I’m going tomorrow for a mastectomy as a result of DCIS. My surgeon suggested this as it’s quite a large area and I have quite a small chest. I am not having reconstruction and hopefully will not need further treatment. They will check 1 - 4 lymph nodes too. I’m 52 and this was picked up at my first mammogram in October. I’m a primary music teacher and had 10 nativities to play for before Christmas hence the delay.

S

Good luck tomorrow! Will be thinking of you xxx

Hi there

I was so impressed with everything at my hospital! I could have gone home on Wed after surgery but opted to stay the night. I could have stayed a second night but was fine so came home.

Ive only taken paracetamol and in fact haven’t taken any today as I’m not really in any pain. The wee bit under my arm is a bit stiff but I’ve started my exercises. I didn’t sleep too well the first couple of nights but it’s getting more comfortable. The breast nurse at the hospital will phone me on Monday to check I’m okay and will see me on Thursday when I go for the results. I have absolutely no worries about that meeting - I was only concerned about the general anaesthetic and we’ll cope with whatever happens. Where the dressing is just feels a bit numb. I’m wearing a sports bra at all times - you really wouldn’t notice much difference to look at me from last week!

Feel free to ask any questions.

Sheila xx

Sheila,

You are Wonder Woman!! You sound like such a positive person-this can only aid your recovery.

I'm still in limbo at the moment-next appt is with plastic surgeon.

Keep strong! Xx

Hi Radley,

I am so sorry to hear that having already had a lumpectomy you now need a mastectomy. You must have been very disappointed when you were told this. I also have mucinous cancer and had a lumpectomy 9 years ago. The following year I found another lump in the same breast and had a double mastectomy.

I coulldn't have straightforward reconstruction for 3 reasons. The fiirst was that I had previously had my gall bladder removed and  it was a full open cholecystectomy, which left scar tissue that could not be used . Because it was a double mastectomy that I had, this wasn't ideal for taking tissue from my back either as, it would have to be taken from both sides and could prove problematic. I have also stopped breathing under anaesthetic in the past, so I didn't want to risk an operation which could take several hours. I had always thought that I might get a reconstruction at a later date. I cope fairly well with my selection of prostheses and have since decided not to risk reconstruction.

I have silicone prosthesis, which feel too heavy for everyday, but give a better shape if I want to be dressed up. I wear a polystyrene bead prosthesis, which is super lightweight for every day. I also use one of Marks and Spencer foam breast forms, which are also light weight, but give a better shape than the polystyrene beads, but feel a little firmer than a normal breast. For swimming I found that the polystyrene prosthesis used to float up to my neck when I was in the water and this never looked natural. The Silicone prosthesis was too heavy and ended down at my waist - not  a good look i can assure you.!

The foam prosthesis was not too bad in the water, but held the water when I was coming out of the water and, I had to squeeze the water out of the foam as I came out of the pool. I then discovered knitted knockers, a charity for people who have had breast surgery. These are hand knitted by volunteers and filled with bath scrunchies and, are fabulous in the pool, as they don't retain too much water.

You can order these for everyday or swimming. They are free of charge, although you are welcome to make a donation. I have sewn a pair of these intoo my swimsuit and find them fantastic - none of the aforementioned problems and, they dry much quicker than any other type of prosthesis. They come beautifully packaged, with a packet of love hearts and a personal message from the person who knitted them. It is really very touching.

I also find that some dresses and tops are too low cut and have to use modesty panels for this. Some of these clip around my bra strap and others just use poppers to adhere to the material of the dress or top.

I am entitled to get two bras pocketed every year. If I want any more I have to pay an aditional £8.00 per pocket, but I can get this done at the same place as I get my NHS pockets. If you are adding pockets to a bra, you need a bra with good support. It is 9 years since I had my lumpectomy and 8 years since I had my double mastectomy and I have mostly used Marks and Spencer Total Support Bras.

Like you, I have always had a big breast and had a lot of underwired bras. I discarded all of these to my regret and, still cannot wear anything underwired. Marks and Spencer do supply some post-surgery bras, which are already pocketed. These work out to be much cheaper than having to pay for the bra and then pay to get them pocketed. The bras are also much more fashionable.

There are other companies such as Amoena, Simply Be, Nicola Jayne, Royce, Anita and Asda, Debenhams, which also supply post-surgery bras and swimwear.

I always had a supply of underwear that I was proud of  and, do miss my special matching sets. However, I have gradually discovered where to get some sexier items and, have slowly built up a reasonable selection of bras. I don't have to use any particular make of bra, but need someting with good support and no wire.

If you go for specialist post-surgery bras, they tend to come in 3 colours, black, white or nude and are by no means what you could describe as pretty. I have developed bilateral lymphoedema since I had my double mastectomy and, have had bras prescriped for me through my Lymphoedema clinic. These are real body binders and, only really suitable for someone over the age of 90!

Just because we've lost our breasts doesn't meant that we don't still want to look pretty. In fact we really want something that can make us feel more feminine and, boost our morale.

If I can be of any further help ,please let me know.

Please keeep us updated on your cancer journey and , remember that we are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine

Thank you so much for your detailed reply which is very much appreciated.

Why did you have Bilat mastectomy when the lump recurred only on the operated side-did you opt for it or you were advised by the doctors to have it as prevention.

I am not a swimmer infact i never learnt swimming so I am not bothered about that.

Its just the day to day prosthesis i was worried about.

You say you are comfortable with the polystrene ones- do you get it from hospital-or we have to buy them.

Saw the foam ones on M&S website which i will order later.

I have also ordered a couple of post surgey bras from them as suggested by you.

One thing is bugging me-i have read in other posts that DCIS was diagnosed by Mammogram and women have had treatment based on that.

In my case I was told it was not seen on mammogram -only the histology of the specimen sent after the surgery showed the cancer surrounded by DCIS -a total of 60mms.I had mammograms and scans with biopsy-wonder why such an extensive DCIS was not picked up before the lumpectamy-it would have saved me from having 2 surgeries!!

I did query the Surgeon regarding that-but he said not all DCIS shows up on Mammogram.

So I have to believe what he says.

Anyways,Thanks again for all the info.

Regards

Radley

Hi Radley,

After I had my lumpectomy, I was told that I had mucinous cancer, which, if you have to have cancer, is one of the best sorts to have, as it is not very aggressive. I started taking Tamoxifen. When my pathology result came back from my lumpectomy, it said that there was insufficient margin removed, but my surgeon advised me that he had been aware of this at the time and, had removed an additional margin, so there was no need to worry about that.

Shortly after this, I discovered a lump in my other breast, which was larger than my original lump. My surgeon kept ignoring this and, wouldn't scan it, yet he wanted me to have radiotherapy. I refused to have one breast treated whilst he was ignoring the other and, we had a Mexican stand off for several months. He eventually realised that we were getting nowhere and referred me to the surgeon, who was in charge of all the other surgeons in the area. He dressed me down for 1½ hours in a freezing cold lecture theatre, telling me that they couldn't have patients dictating what treatment they had.

I pointed out to him that I was not demanding treatment, but diagnosis and, I was under the impression that I had been sent to see him for a second opinion. He seemed much more at ease with this, took me to a consulting room and, immediately found the lump. He sent me for a mammogram, ultrasound and biopsy straight away. Fortunately, this lump turned out to be benign, but was fairly large.

When the other lump reappeared in the original breast, I was advised that I would need a mastectomy and, my surgeon and I discussed the possibility of having a preventative double mastectomy, because he believed that my benign lump might change over the years. I then started taking Letrozole for 6 years and, finished taking this in July 2017.

I have never regretted having this done, because I feel as if I took awway as much 'nasty' tissue as possible. I also went to see two eminent researchers in radiotherapy at this time. The first advised that it was still worth a try, whilst the other was quite certain that if I hadn't had it within 3 months of my original surgery, it was a waste of time. I felt that this gentleman seemed the more knowledgeable of the two and took his advice.

I had a routine mammogram not long before I first attended the breast clinic. This didn't show up anything untoward, but I later discovered that mucinous cancer doesn't always show up on mammogram or ultrasound. Perhaps this was the same with your DCIS and why it only showed up in your pathology sample?

You can get the Silicone prosthesis from the NHS, but have to buy all other types. Marks and Spencer's foam  forms are lighter and denser than the other type of foam forms you can buy. I have a great wee  polystyrene bead type prosthesis, which I bought many years ago. I have tried to replace this over the past few years, but haven't been able to get anything like it. The ones I have ordered have been much bigger beads and not had any shape to them, so I have returned them.

The M & S ones are the cheapest, as they are sold in pairs. This suits me, as I have to pay double for all the other ones, which are sold separately. Silicone are the more expensive, then foam and then polystyrene beads.

I was initially told by the nurse who was fitting my first prosthesis that it needed to be the same size as my original breast. I had large breasts and , they certainly didn't need to be anywhere near that weight. The Silicone prostheses have been gradually getting lighter over the years, but are still not light enough for my liking. The weight can put additional strain on your back and shoulders.

Do you have a date for your mastectomy yet? You should be given a softie to pop in your bra for the first while. After that, the hospital should arrange for you to get a Silicone prosthesis. Ask your breast care nurse about the supply of these.

Hope this helps,

Jolamine xx

Hi Oaktree

Just wondering how you’re getting on?

Sheila

Hi Jolamine,

Very sorry to know about your ordeal to get a proper diagnosis!

In my case it was not bad at all- i was sent for a Mammogram by the ENT Surgeon as a CT scan of chest showed a lump in the neck (originally referred to the Respiratory Clinic for shortness of breath which was found to be due to a rt sided vocal cord palsy) Mammogram showed a small lump 10mm-a biopsy was done at the same time which showed Mucinous carcinoma.

I had a lumpectamy within 2weeks and histology showed extensive DCIS of 60mm.Breast care team were as shocked as I was too.After the histology I was sent for an MRI to check the other side-but I was told it was ok- I am going to have the Mastectamy on the 24th-it all happened within the last 3 months-so in a way I am lucky I guess if what i have been told is true

I am not sure as before the lumpectomy I was told it is just a very small lesion which can be excised and perhaps will only need radiotherapy afterwards.

Now I am  told  I will need further treatment depending on how widespread the DCIS is on the histology after the surgery.

 So I am getting panicky-but cant talk to my family as it will upset them.My son -his wife and little one yr old daughter who I was looking after live with me. I feel bad that I will not be able to do much for her from next week as both the parents are working.

The Nurse did tell me about the softie they will give me as well as the silicon one-I had a feel of it but not sure i noticed the heaviness-My mind was blank at that time.

Your experience and your advice keeps me going and thank you so much for it.

Regards

Radley.

Hi Radley,

I am not surprised that both  you and your care team were shocked to discover such extensive DCIS after your lumpectomy. However, I'm glad that you are all set for your mastectomy on 24th.

Sometimes the pathology results after surgery can show up additiional problems, which can change the whole course of your proposed treatment.

It must be incredibly difficult for you not to share your feelings about all that is happening with your son and daughter-in-law.  The advice usually given is to share everything with your family and to discuss things openly with them. This reduces stress for both of you and, will help both of you through your cancer journey.

How lovely to have a one year old granddaughter. My two are now 7 and 9 and live a long distance away from me. I wish that they were closer. They grow up so quickly too, so make the most of her at this stage.

I shall be thinking of you on 24th and hoping and praying that all goes well.

Kind regards,

Jolamine xx

Thank you Jolamine for your concern and support

Regards

Radley

After the mastectomy and sentinel node thing last week I returned to the hospital yesterday for removal of the dressing and pathology results. All good. No further treatment required!

Sheila xx

After the mastectomy and sentinel node thing last week I returned to the hospital yesterday for removal of the dressing and pathology results. All good. No further treatment required!

Sheila xx

Hi Sheila,

I am absolutely delighted to hear that your pathology results were clear.

Kind regards,

Jolamine xx

Great news Sheila. You can now concentrate on your recovery.

My very best wishes for a happy and healthy future - Irene xx

Hi Sheila,

Absolutely delighted for you! Hope you celebrated the good news.

I had a lengthy consultation with a plastic surgeon this week and he is confident a lumpectomy is the way to go! I was completely taken aback by this as I thought it was off the table! Just waiting on a call now.

Oaktree x

That’s great! Hopefully it’ll be soon and you won’t be anxious about it for long. 

Thanks to everyone for your good wishes.

Sheila xx

Thar's great news Oaktree.

Keep us posted - irene xx

Hi-just waiting to be picked up after my lumpectomy yesterday! Feeling good!

Thank you all for you kind words and support.

Oaktree xx

Great news Oaktree. Glad it's all over for you and you're feeling good.

Do you need radiotherapy?

Irene x

Hi Irene

Yes, I will get radiotherapy 

xx

That’s good that it’s over. Have a good rest and let others do all the hard work.

Sheila xx

Hi Oaktree 

Start using a good moisturising cream to prepare your skin for the radiotherapy as soon as your wound has healed.. My doctor prescribed Isomol gel and I still use it now.

I had little reaction to the radiotherapy after using it.

Moisturise, moisturise and moisturise is the order of the day now!!