DCIS recurrence after 4 years

Hello Queen Poppy. Out of interest, did they say this was the same cancer coming back or a new one altogether? We have had people here whose first cancer was different to the cancer they had later on even though both were breast cancers. 

When did you have the mastectomy?

Hi GreyCats.

As far as I was made aware it was the same invasive non hormonal cancer. This time it was over a much larger area. The surgeon told me the first surgeon, who has now left the hospital, should not have told me it would not return.

I had the mastectomy at the end of August this year.

Thanks, Queen Poppy. I am 7 days post mastectomy at the moment, so far so good but starting to wonder about things such as good bras and also if there is anything I have not thought of in terms of "life after." Your viewpoint is unique in that you have the experience of four years from first diagnosis, and three months since surgery, so I would be interested in hearing your take on things.

Hi GreyCats

I am glad your surgery went well. Did you have the reconstruction?  This will affect your choice of bra.  I was instructed by the breast care nurse at the hospital to have a front fastening bra one size bigger than normal.  I brought post mastectomy bras from M&S which I had to wear in hospital and then for a month.  I managed with 2 of these and they worked fine for me.  However, if you have had reconstruction really you only need an ordinary front fastening bra as the post mastectomy ones have a flap for a prosthetic breast which is unnecessary.  I think the front fastening is because you cannot lift your arm fully for a while. The same nurse also told me no underwired bras for at least 3 months but not to spend a lot as bust size will change.  I am now wearing some nice soft bras from M&S again from the Sumptuously Soft range for now but my goal after chemo is to get measured up for some really good bras, perhaps without underwire.  I am going to try Bravissimo. You may also need to consider things like skin friendly shower gel and deodorant for a few weeks as you recover from the surgery.

My advice for now is to focus on your recovery and follow any advice you have received and not worry about your results too much. I know this is easier said than done.  Also to do any exercises you have been given to get your arm moving and avoid getting lymphodema. I have dealt with anxiety over this by going for long walks sometimes alone and sometimes with friends and this has helped to take my mind off things. I now also avoid cancer related posts on social media as I don’t find them helpful. Personally while  I do appreciate celebrities aim to raise awareness, it is not good to read about people having ‘’brutal surgery’ when you are just about to have the same yourself!

In terms of life after, once I had the all clear 4 years ago, I became more breast aware and checked myself regularly but did worry quite a lot about recurrence.  I recommend not googling things like I did as you just spend more time worrying. If you have any concerns speak to your breast care nurse, however silly you feel. Right now I am just focusing on getting through the chemo.

There is quite a lot of help and support out there from McMillan and your breast care unit . Also, my hospital has set up a new well-being scheme for people living with cancer and going through treatment and it’s been really helpful for me.Therefore it’s worth finding out what is available to you where you live as dealing with all of this can sometimes feel lonely even with a supportive family and friends.

Wishing  you luck with your recovery and feel free to contact me again x

No reconstruction here. I am not all that bothered about it, but I made sure the option was open in case I change my mind later on. I have no issues using the arm on that side to the fullest as the range of movement is there, but I am still a little concerned about bursting a stitch so I am being careful. I woke up this morning with that arm over the top of my head but there was no visible harm so I figure it's probably ok. I agree with you, the exercises are great and I am looking forward to doing the full set for the first time tomorrow morning (today I am only allowed the first half.)

That's interseting about going one size up. Does that mean both cup and around or just cup? I was told I would be fitted for a bra 4-6 weeks after surgery right there at the hospital, curious to see how that goes, and wondering how to find a bra that would suit me. I read what is said on the forum about it but at the moment not always able to retain the information. 

I think the size up is related to swelling. I would get the hospital fitting and then see if there is nicer fabric etc on the market. I saw lots on Amazon but was concerned about the quality and fit. Hence I went with M&S. I have since seen that Bamboo bras look nice and soft and comfortable.

Hello Queen poppy, sorry to hear its come back again. I had lumpectomy and node removed, nodes clear thank god I had to go in for a second surgery to remove more cells and was told if there was anymore after that I'd need masec8but lucky they got all clear margins..I'm waiting on a test coming back to decide if I need chemo I will also be giving radiotherapy..were you offered chemo first time..just curious..xx

Hi Deeds, I was not offered chemotherapy the first time, I think because of size of the DCIS and clear margins. My lymph. nodes. were not tested then and were clear this time. I just had the lumpectomy and 3 weeks radiotherapy. My surgeon told me that my current situation might have been worse without the radiotherapy. With what has happened to me now I wish I had been given the option of the mastectomy with radiotherapy last time. I don’t think my results showed the need for thiis.

Good luck with your results. Fingers crossed for you.

Queen poppy I’m confused about your second diagnosis, DCIS is ductal carcinoma in situ and as I understand it can’t spread to lymph nodes and isn’t treated with chemo, I have had it too. It sounds to me like your second diagnosis is invasive breast cancer for the treatment you are now undertaking? Apologies for my confusion x

Yes this time it’s DCIS with stage 2 invasive cancer. Sorry for confusion X