Hi Joolz,

I am sorry to hear about your DCIS. I have had 2 bouts of breast cancer. The first was 8 years ago when I had a lumpectomy followed by Tamoxifen. The second was a year later and this time I had a double mastectomy followed by Letrozole for 6 years. I stopped taking this in July 2017. Unfortunately, I could not have reconstruction, as a result of previous surgery.

I found the mastectomies easier to cope with than the lumpectomy. I sincerely hope that you get an appointment through soon, as it is waiting and not knowing what is happening that is the most scary part. Once you start treatment you will feel more positive in yourself.

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

Kind regards,

Jolamine xx

Thanks for your support  Jolamine and I’m sorry to hear about you having 2 bouts of it, what a blow to you but it’s encouraging to me that you’ve come through it. If only there was no waiting involved another 2 weeks so far from seeing the local surgeon who offered a silicon implant, 6 weeks since the mammogram recall, it seems an age. I’ve been told mine is oestrogen positive so I’ll need to take something like Tamoxifen too.

I’m so glad I plucked up the courage to post on this site cos it helps to talk to people who really understand

xx

Hi Joolz,

What a wait you've had. Have you any indication when you are likely to get an appointment to have your mastectomy or is it still a case of wait and see? No wonder you're anxious - 'd be climbing the walls by now.

The fact that yours is oestrogen positive is good news. It might be worth asking how long you are likely to need the hormone therapy for. I understand that some doctors are now recommending that you take this for 10 years instead of the initial 5.

You'll find this site a great resource as you travel your cancer journey. Many people also find it helpful to write things down for the forum.

Jolamine xx

Hi Jolamine.

Thanks for your support  and I’ve been back through other’s posts and notice how much good support you give to other people. Thank you for finding the time to care. You’re amazing

On Thursday I received a copy of a letter from my local surgeon to the surgeon asking me to be given an outpatient appointment there. Undated but I assume it’s only just been sent despite me seeing the local surgeon on 17 August. I’m not sure what happens next maybe someone can help me with what happens next. Hopefully I’m not jeopardising the chance of the DCIS becoming invasive by asking for the Diep flap.

I’m also worried about the hormone therapy as I had a pregnancy related P E when I had my son 15 years ago. I mentioned it to the surgeon and they said they would worry about that after my mastectomy but I’m trying to get some facts to be prepared. 

This site is amazing well done everyone involved. You don’t feel as alone x

Hi Joolz,

It doesn't sound as if your local surgeon has put much priority on sending your letter of referral, when he has only just sent it. Hopefully it won't be too long before you get an appointment with the new consultant.

I don't know what happens next either, as each case is individual, but I would expect your new surgeon to possibly want to run some more tests for him/herself. The usual tests are Ultrasound, Mammogram, Biopsy and sometimes MRI or CAT scan. I am pretty sure that the surgeon wouldn't even consider a Diep flap if there was any likelihood of the DCIS becoming invasive.

I am sorry to hear about your pulmonary embolism. They say that forewarned is forearmed. Now that your care team knows about this they should do all that they can to avoid a recurrence. Medication and compression stockings can help to ensure that this doesn’t happen again.

I hope that it won’t be long before you get an appointment with the new surgeon. Are you going to have to travel further to see this person?

Do please let us know the outcome.

Kind regards,

Jolamine xx

Hi Jolamine

At least I have some sort of idea what’s ahead thanks. So many tests!!! I suppose they have to check everything. I just hope I hear something soon. I’ve just looked at the calendar and my first biopsy was on 11 July. I then had to have another a week later as they hit a blood vessel. Such a long time ago.

The hospital is just over an hours drive from where I live on the East Sussex coast, 40 miles so I won’t anticipate having many visitors when I do eventually have my op but I’m determined to be out as soon as possible anyway. 

I’m convinced I have someone looking after me though as when my blood clot hit my lung in the past I was actually still  in the hospital where they were having a trial at the time of a new clot busting drug. They were able to give it to me within half an hour and it literally saved my life. If I’d been at home I wouldn’t have made it in time.

Just hoping the DCIS has been caught in time too but ready now after an initial meltdown to cope with anything.

Kind regards and keep up the good work 

Joolz

Hi Joolz,

I don’t honestly know how you have managed to wait so patiently for 2 months to see a surgeon who can actually help you. I found the two weeks wait to see the surgeon and the week waiting for the results of tests were the most scary time of my cancer journey so far.

You will now have the name of your new surgeon in your letter. If you don’t hear anything in a few days, you could phone his secretary, explain how long you’ve been waiting and how anxious you are. You can usually trace her through the hospital switchboard if the number is not at the top of your letter. It is worth asking how long you are likely to have to wait and saying that you are willing to go and see them at any time if they get an earlier cancellation.

My hospital is about an hour away too. I had to change from my local hospital when my surgeon was telling me that there was nothing in my other breast, despite the fact that I could clearly feel a lump there, as could my GP. I refused to have radiotherapy until he looked at this. He didn’t, so we had a Mexican stand off for 6 months before he referred me to another surgeon, who found the lump immediately.

You should only be in for a few days at most, so it shouldn’t be long before you’re back home again.

I cannot get over how lucky you were with your PE. What are the chances of the hospital you were in  being the very one that was carrying out research on it at that very time. You were also so lucky to be staying in the hospital at the time.

I am glad to hear that you are ready to come out fighting now. You will probably have other meltdowns along the way, but the more positive you feel in yourself the better you’ll cope with whatever is to come.

Like you, I sincerely hope that your DCIS has been caught early enough.

Kind regards,

Jolamine xx

Thanks Jolamine for your reply. Your original surgeon sounds a nightmare. He is playing his game when there is a life at stake. Why not listen and try a little bit of understanding it costs nothing. You must have been so frustrated and where the hell do you turn to then. Thank god you got someone to listen in the end.

I think if nothing comes in the post tomorrow I might try chasing things up. Possibly my breast cancer nurse might help. All I want to do is get an appointment date I can focus on. Limbo land is an awful place. I just feel I don’t know what I can commit to on any day because I want to keep it free just in case an appointment comes through. 

Ive no idea how long it takes for dcis to change to invasive and maybe I should take some comfort from the fact they’re not treating it as urgent but that doesn’t stop that little voice saying “what if it’s changing right this minute”

Rant over

Thanks again Jolamine, it’s amazing that you have personally been through so much and you’re still so caring and level headed x

Hi Joolz,

Apart from his refusal to check out my other breast, my surgeon was really a very pleasant gentleman.

If you are chasing things up tomorrow there would be little point in chasing up your breast care nurse, as she will have no clout with your new hospital. Try your new surgeon's secretary. She should be able to tell you more. If you phone up the hospital switch board and ask to be put through to your new surgeon's secretary you should be put through to her.

It is so kind of you to refer to me as level headed. I've had my moments of meltdown too. People liken the cancer journey to one big roller coaster ride and this is so accurate. One minute you're sailing along, then something else occurs to whack you in the face. Sadly, we've no option but to carry on and remain as positive as possible.

Kind regards,

Jolamine xx

Hi joolz60, 

I was diagnosed with dcis in mid June and waiting til 27 aug for mastectomy and diep flap reconstruction. I wonder how long you had to wait in the end and how things turned out for you? Like you, I'm finding the waiting agonizing and worry that it will turn into invasive cancer. 

Any advice if be grateful for and hope you are now recovered fully. Xx