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Delayed surgery for low to intermediate grade DCIS -15 weeks!

8 REPLIES 8
Member

Re: Delayed surgery for low to intermediate grade DCIS -15 weeks!

Hi MrsPlum

 

It's Emily here from Breast Cancer Care.

 

I just wanted to let you know that we have some telephone volunteers who were a similar age to you at the time of their diagnosis too (in their late 20s). They're now about 3 years past having had their treatments and are willing to share their experiences with you and chat to you if you think this would be helpful.

 

If you'd like to talk to someone, feel free to give us a call on 0345 077 1893 or drop me a private Forum message with your telephone number. A member of the Someone Like Me team will then give you a call to make arrangements between you and the volunteer to speak.

 

Best wishes

Emily at Breast Cancer Care

 

Member

Re: Delayed surgery for low to intermediate grade DCIS -15 weeks!

Hi MrsLPlum - we are all here to support you and you are not alone. I know how frightening it is to be told you have pre-cancerous cells and until you’ve had final clearance, your mind will likely not settle.

I contacted NHS England and NICE to understand the guidelines on treating DCIS. I would strongly recommend writing to the hospital Chief Exec and Medical Director asking for written guidelines on how they treat DCIS in their organisation. I also came across another woman in a similar situation with DCIS whose surgery was delayed like ours and she put out a tweet on Twitter to all the hospitals she could reasonably travel to asking if they could perform a DIEP flap reconstruction ASAP and a local hospital replied and she was operated on within 2 weeks. It maybe worth a shot if you have choices and a Twitter account. I will retweet it!

I am 46 - much older than your very youthful 29! My mum lost her breast at 37 and had a lumpectomy at 47 so this has been around me for a long time. Mastectomies have changed. The thought of losing your breast is unbearable, boobs are part of being a woman and feeling womanly for many of us. I was devastated when I found out I would lose mine, I feared I would be butchered like my mum.

It is nearly three months since my operation, a DIEP flap reconstruction. I had 7cm DCIS on my mammogram which turned out to be around 5.5cm on the final analysis along with 1.6mm invasive cancer. I’ve just finished radiotherapy and thankfully avoided chemo. My boobs - well, they aren’t my own but I’m growing to like them and honestly, my reconstruction isn’t as bad as I thought it would be though there were days I really fell out with it! This week, I’ve been for nipple casting - things you don’t even know exist!!

If you really want a mastectomy, pursue it, otherwise you will always doubt your decision. I am very happy to share my own photos if it would help you. I have also written a blog if you would like the details, let me know.

Please do get in touch if there’s anything at all I can do to help.

“You never know how strong you are until being
strong is the only choice you have”. Bob Marley

Sending you lots of positive thoughts Tootsie xxxx
Member

Re: Delayed surgery for low to intermediate grade DCIS -15 weeks!

I am new to this forum but I have recently been diagnosed with moderate to high grade DCIS at 29 and was due to have a lumpectomy on Monday but when I saw my consultant yesterday he told me that this would have to be delayed as there was too much swelling in my right breast to do the surgery. I have had numerous biopsies and tests over the last 3 1/2 months and now that the surgery is likely not to take place until just before Christmas I feel like it is another set back and I just want it all to be over with. I was getting so anxious about the surgery that I haven’t been sleeping and now to be told it’s not going ahead I just feel drained. I know it will happen eventually but it doesn’t help my emotions mentally. My consultant also said to me that as it’s a pre cancer and not true cancer it’s not so urgent but to me I can’t wait to get rid of it and it already feels like an eternity. 

 

I have two areas of DCIS totalling 5cm in total and they wanted to do a mastectomy but my consultant has agreed to perform a lumpectomy first to try and preserve the breast. I am only 29, married and do not have children so to lose my breast I feel it just too much for me right now. 

 

I just feel feel so alone as I don’t really have anyone to talk to that is of a similar age or experience so as much as I love the support that my friends have given me throughout this ordeal i can not relate to them right now. I have spoken to other women I know who have had breast cancer and that has been helpful but they have all gone through it and come out the other side, thank god. No one I know is currently going through this. My family and husband have been fantastic but I know it is taking a toll on them too and so I try to stay strong for them but I can only be strong for so long. 

Member

Re: Delayed surgery for low to intermediate grade DCIS -15 weeks!

Hi Tootsie

I didnt have a delay like yours for surgery, but it took 6 weeks from initial mammogram to a confirmed diagnosis, 5cm high grade DCIS. Then two lots of surgery and a further nearly two months to start radiotherapy. Part of the delay was because my surgeon was on holiday, there's obviously a disadvantage to getting diagnosed in summer!

Whenever I asked whether the delays were likely to allow the cancer to keep growing, they just said it's only DCIS, there's no hurry, it takes years for DCIS to develop, you're not a priority. So it took from June to December to get treated, even my oncologist said everything had dragged on too long.

 

So I know how stressful it is when you're in such a state of turmoil and it feels like no one cares enough to get on with things, it feels like you're in limbo and forgotten. I found no one seemed to care that the NICE guidelines were all missed.

 

I don't have any answers for you, except to say I know how it feels, it's hard to stop your imagination spiralling till you're convinced the results will be worse than just DCIS, I was warned there was a good chance it would turn out to be invasive because of the size and grade. But all was fine, and I'm now two years past diagnosis.

This feels awful, but  you will get past this.

 

Sending you a hug

Xxx

 

Member

Re: Delayed surgery for low to intermediate grade DCIS -15 weeks!

Hi Tootsie

 

It's Emily here from Breast Cancer Care.

 

I'm really sorry to hear that your surgery has been delayed further. As well as getting responses on here, I just wanted to let you know that we have a telephone volunteer who experienced a long delay for their surgery too.

 

If you'd like to chat to someone over the phone, feel free to ring Breast Cancer Care and we can put you in touch with them: 0345 077 1893

 

Wishing you all the best in the meantime.

Emily at Breast Cancer Care

Community Champion

Re: Delayed surgery for low to intermediate grade DCIS -15 weeks!

Even if it is upgraded, hopefully it doesn’t change anything. I had an early invasive bc which was upgraded from 1 to 2, but it made no difference to the treatment plan.
From what I’ve seen here, bc tends to be slow growing anyway & as you have a dcis diagnosis, where it’s low grade & contained, it’s highly unlikely a few weeks will make any difference. Although, inevitably especially in view of your family history, having a delay is not helpful with the anxiety.
Try not to worry about it being upgraded, chances are it won’t be & if it is, the treatment plan may not change anyway & whatever the final outcome, it will get dealt with.
ann x
Member

Re: Delayed surgery for low to intermediate grade DCIS -15 weeks!

Thank you Ann, I’m so worried the DCIS which is 7cm will be upgraded following mastectomy and in that sense, I feel nervous. When you say nothing is likely to change, do you mean in terms of the DCIS?

Thanks again x
Community Champion

Re: Delayed surgery for low to intermediate grade DCIS -15 weeks!

Hi Tootsie,
First of all, welcome to the forum & sorry to hear you’re going through this.
Delays are always so difficult to deal with, but nothing is likely to change at all, in the interim & you have confidence in the team you’re under. As you say, transferring to another team probably won’t make any difference to timescales.
Having had an allergic reaction is bad luck with the timing, but obviously, you need to be fit for surgery anyway.
Maybe just stay where you are & keep in regular contact with them about timescales. I was offered a choice of hospitals with the same surgeon, but my response was to just go wherever had the earliest date.
Wishing you well with it all, it will get sorted.
ann x
Member

Delayed surgery for low to intermediate grade DCIS -15 weeks!

Hello everyone,

I am new to posting to the forum but have benefited from so much advice since my diagnosis. I am hoping someone may be able to help me personally now.

I was diagnosed with low to intermediate grade DCIS on 16th May. I have a strong family history of breast cancer, mum at 38, 43 and then ovarian at 53, mum’s dad. Grandma and aunt on my dad’s side. Mum and grandad were BRCA2 carriers, I was tested 14 years ago but was negative. There is now some concern by the clinicians supporting me as to whether this could be a false negative - I am 45. I am awaiting a retest - it’s 6 wks since my urgent referral was sent.

I was seen initially by a consultant who couldn’t perform a DIEP flap reconstruction. He advised me that DCIS is treated under the NHS cancer waiting targets ie 31 to treatment or surgery from the date of diagnosis.

I saw my new consultants who I love and have much confidence in but told my surgery would be delayed. The oncoplast told me there was no rush as DCIS was not invasive despite in the same conversation telling me 20% will be upgraded following biopsy. I felt confident in the surgical team so agreed to the 5th July as my surgery date.

Unfortunately, I had an allergic reaction 3 days before surgery and was pronounced medically unfit to have the op. I have now been told that due to theatre scheduling, my surgery will not take place until the end of August/September- a further 8 week delay. This means I will have been waiting a minimum 15 weeks from diagnosis to surgery which seems totally unacceptable.

I have tried so hard to be positive during the last few weeks but I am struggling with this. I’ve looked at moving hospital but have been told my 31 days will start again and so it is unlikely surgery will be any quicker and if there are women with invasive breast cancer, they will take priority in scheduling theatre sessions.

If anyone has any thoughts I would greatly appreciate your input.

Thank you in advance
Tootsie