Newly Diagnosed DCIS and caught up in Coronavirus

[SL255]

Thanks for the post and I hope your recovery goes well. I am seeing my consultant again next week so that’s vg. And looks like pandemic is starting to turn now which hopefully will help us all! Thanks Sarah Xxx 

[Bozzley]

Hi Sarah,

The reconstruction is the one that is smaller. I am quite big busted, 36F and the reconstruction is about two sizes smaller and a different shape. The idea is to have a reduction on my remaining breast so that it matches but of course this is all waiting on COVID. I am not sure about the mesh sorry.

I am very lucky and so grateful to have been so well looked after despite the lockdown. 

I can't imagine not knowing when the surgery will be, you must be so worried. I understood, when I had my surgery, that from diagnosis treatment had to start within a month. Where about do you live? I am in Cheshire. xx

[SL255]

Hi Sharon,

Thank you very much for getting back. This forum is such a lifeline. 

I wanted to ask why is there a difference in cup size, I am surprised to hear the reconstructed breast is bigger as when they take the nipple away would it not be smaller? Is this something I should ask beforehand as I got the impression it would be smaller on the implant side which I would prefer as I don’t want to have to go up a size if you see what I mean? Did you have the mesh implant?

I think it must emotionally be hard to accept but on the positive you are so lucky that you have the op behind you and the surgeries to remove the cancer gone, which is the most important thing. I find myself going from worrying about what they might find out to worrying about the after effects of the implant. A menu of worries! 

Thank you again for all the help as very strange to try and understand what’s ahead of me.

Sarah xx 

[Bozzley]

Hi Sarah,

I am so sorry to hear that you have to wait. I can imagine that is extremely worrying. Once I knew I had to have surgery I just wanted it over, I was very lucky that my surgery was one month after diagnosis, so I didn't have to wait long. I understood that this was the policy even during the pandemic, mine was done in March 2020 at the start of the first lockdown. My second surgery to remove the second row of lymph nodes was in April 2020. This was done under the NHS but in a private hospital that was COVID safe just for cancer patients. I hope that you get some answers and a date very soon. The waiting is the worst part of this journey.

Yes I feel that it was the right thing not to wait even though it's not what I wanted exactly. I have found it hard accepting the new me, as it does feel so different. Due to the ongoing covid situation I have not been able to have a reduction on my other breast so there is a difference of 2 cup sizes between them. This means finding a bra is very difficult and I am very self conscious. I know I am very lucky and need to be patient.

take care 

Sharon

[SL255]

Thanks so much Sharon think you made the absolute right decision not to wait.
Because of the current situation with the pandemic I don’t have a date yet which is very worrying that it will spread not sure how fast growing intermediate is. Also not suitable for DIEP so have to go implant route. At this stage I am way more worried about long term implications of the wait for surgery and what will happen at next stage of pathology. How are you feeling now about everything? 
Hope your recovery goes well for you and thank you for all the replies. 

Sarah xxx

[Bozzley]

Hi Sarah,

I was given the option to have flap procedure, to use my own body to reconstruct the breast or to have the silicone implant. I had decided to have the flap procedure it seemed more natural to me even though it was a bigger operation. Unfortunately due to COVID it was cancelled.

I was given the option then to wait, have the mastectomy but not have any reconstruction or to have the silicone. I was actually the last person to go down on the last day before they stopped all non essential surgery due to COVID. Had it been the following day I would have not had any choice and would have only been able to have the mastectomy. I would have then have to wait until they were doing non essential reconstructions, which was on an unknown date in the future. I decided I couldn't wait and I didn't feel comfortable having only one breast. I wasn't happy but felt I had to have the silicone.

I wasn't given any choice about how it was done, so I'm afraid I can't help you in that area.

The recovery was about 6 weeks to feel that I could move around fairly easily. I ended up having to go back in to have a second row of lymph nodes 2 weeks after my initial surgery so that set me back a little.

When is your surgery planned for?

Sharon

[SL255]

Hi Sharon,

Appreciate the message thank you. Option is implant using accellular dermal matrix as a mesh. It is difficult to find information on people who have gone this route so love to hear what you selected and how it was for you and how quickly you recovered?  
Hope your arm issue is resolved soon.

Thnks again Sarah 

[Bozzley]

Hi Sarah,

I am sorry to hear of your diagnosis.

It has been nearly 2 years now since my diagnosis. I had a full mastectomy and reconstruction. This was the  only option I was given. The only choice I had was if to have the reconstruction straight away or to wait. I decided that I couldn't have just one breast, it didn't feel right to me. I also had 2 lots of lymph nodes taken after the first row were found to be cancerous.

My reconstruction went well and the scar is very neat. I have been left with some numbness over the breast but the reconstruction looks good. Due to the lymph nodes being removed I now have lymphedema in my arm which is a bit of an issue. 

I am happy to answer any questions you might have.

What are the options you have been given?

take care

Sharon xx

[SL255]

Hi Sharon,

I’ve been diagnosed with DCIS and I wanted to check in to see how your surgery went. I am deciding on what options to go so would appreciate any advice.
Thanking you Sarah

[Bozzley]

Hi Claire

I glad to hear that you got to have your operation. This virus is the messing everything up, having to go through what we are is hard enough without all these complications.

Waiting for results is the worst isn't it. I think the not knowing is the hardest thing at least when you know one way or the other you then can have a plan and move forward. I should also hear in the next week. I have my fingers crossed for you.

Yes yesterday was a general again and it is very sore having gone in the same area. I feel like it has set me back 3 weeks to the last surgery.

Take care and keep in touch

Sharon x

[Clairekneeball]

Hi Sharon

Good news you could have the surgery, but I'm sorry they found cancer in your lymph, especially as you werent expecting it.  Did you have to go under another general yesterday?  

I had my surgery 2.5 weeks ago in a private hospital (NHS takeover),  despite being told it was cancelled and I wouldn't get it this side of the virus shutdown.  I'm still waiting on my results (lumpectomy and sentinal node biopsy), I'll hopefully hear next Tuesday (via phone). 

Claire x 

[Bozzley]

Hi guys 

I just wanted to update you.

I have been extremely lucky, I went for surgery 3 weeks ago and when I arrived I didn't know if they were going to do the reconstruction. I met up the surgeon and he informed me that I will was the last person to have the reconstruction at the hospital before lockdown and all surgeries cancelled.

The operation went well and I came home after 2 nights with a drain. I was very uncomfortable especially under my arm where they had taken some lymph nodes. It all feels very strange, the breast itself is numb and doesn't feel like it belongs to me.

Unfortunately when they checked the lymph nodes they found cancer, despite being told it was highly unlikely, less than 5%. So yesterday I went back into a private hospital for the next level of nodes to be taken and tested. I now have to wait 2 weeks for the results of that.

I have been so lucky

Sharon x

[Simmo]

Best of luck Claire I’ll be thinking of you and keeping everything crossed 🤞 xxx

[Janie123]

Hi Sharon,

Thank you for your post. Although it has gone on for a long time, I do feel positive. Life has pretty much gone back to normal in the last year, as my Herceptin injections stopped in June 2019, and they didn't really affect me in any case.

The bulk of my treatment was from finding my lump in early May 2018, through to mastectomy October 2018 after chemo, then radiotherapy , fifteen sessions December 2018 to January 2019.

I feel quite philosophical about the delay in my reconstructive surgery. I have sort of got used to the appearance of my scar, but I certainly wouldn't want it to be like this for ever. But another few months delay, to have it done in a safe environment is tolerable!

Thank you again

Jane xx

[Bozzley]

Hi Jane,

What a huge journey you have been on. It sounds like you have been fighting for a long time. It must be so hard for you to continue to battle for so long. 

I can totally understand you being gutted, to be so close and have it snatched away from you. 

How are you doing now you have had a little time to think about things

Do you have a plan or is it just wait and see.

This is my biggest fear of not having the reconstruction straight away. How long could it be before it is done.

I hope you are okay, stay strong you have come so far 

Sharon x

[Bozzley]

Hi Clare,

I am so sorry to hear that your surgery was cancelled. It is so hard when we think we have a plan and then it is changed. The journey of breast cancer is such a roller coaster ride of emotions without the added stress of things being taken out of our hands. 

I don't know about you, but for me the fact that I was no longer in control was the hardest part. I hope that you are happy with the plan that you now have.

Stay strong you have got this

love Sharon x

[Bozzley]

Hi Simmo

I'm really pleased to hear that it all went well for you. It breast cancer is so scary without the added stress of the coronavirus and not knowing what is going to be cancelled. It sounds like you have a good plan going forward and the most important thing is that you feel confident in it.

I have been to have the radioactive injection today, to highlight the lymph nodes.

As far as I know the operation is still going ahead for tomorrow. Although until I wake up with 2 boobs I don't think I will believe it. I am dreading arriving in the morning and them telling me that they are only going to do the mastectomy. I am not sure what I will do if that happens.

I have a everything crossed xx

[Simmo]

Hi Claire,

My meeting went well felt like good news for a change.  They have recommended hormone therapy for now which is a tablet and monthly injection.  I’m going with it as I was pretty scared to have an op at the moment.  

I’m scheduled to go back in 4 months to see my cancer surgeon and fingers crossed by then reconstruction surgery will be running again and i can have it done then.

let me know how you get on

xxx 

[Clairekneeball]

Spoiler

Hi Simmo
I'm not sure about the clip, I think it goes in similar to the way the biopsy clicky thing works, and I think its literally a place marker in case the growth shrinks before whenever the surgery is.  I dont know abkut risk of speading, the breast institute told me that it will put the growth on hold, well the hormones will, that they will shut down my ovaries.  


However I just had a call from the hospital to rearrange my pre op to this Thursday, so I really have no clue what will go ahead this week.  I'm struggling to keep a level head now as I had got myself in a good place with my revised plan.  

How did your meeting go? 



Claire

X 

[Simmo]

Hi Claire,

I’m so sorry your surgery was cancelled 😢 I have a meeting with my cancer surgeon this afternoon to discuss my options now reconstruction has been cancelled.

my bc nurse did mention hormone therapy.  You mention a clip how exactly does that work and is there any risks with that and the cancer spreading?

best wishes

Simmo x 

[Clairekneeball]

Hello

I'm sorry you're going through this.  I'm newly diagnosed and was due to have a lumpectomy/lymph out/therapeutic mammoplasty in a couple of weeks, it was brought forward  to this wednesday in the hope of hearing the virus crisis but I was told they would only operate on the poorly boob and match me up best year.  However  I've now been told there is no surgery until the crisis is over.  I've got to have a clip put in my tumour and start hormone therapy instead this week.  

Hope you are doing ok today 

Claire 

X 

[Janie123]

Hi Sharon,

I had a mastectomy in October 2018, and they wouldn't do an immediate reconstruction as I needed radiotherapy after the surgery. I was so upset about the thought of coming round from the surgery with only one breast. I pleaded for an implant at least, but they said it could harden with radiotherapy and have to be removed. So I accepted it, and with the help of talking with family and friends, and advice from the lovely ladies on here, I came to terms with it, and comforted myself with the knowledge it was temporary.

I was advised that I could have a reconstruction a year after treatment finished. I must say I had to chase up for appointments for this. Firstly my local hospital only do the implant and back flap operation, but they said DIEP would be better for me. I was referred to one place, and I was advised it would be a futher eighteen months before I would have surgery. Eventually I was referred to Bristol in November last year, and they said there was a six months wait. I was scheduled to meet the new surgeon last Wednesday and was told that I was sixth on the waiting list so I should have my DIEP in early May. But then they phoned last Tuesday and said all reconstructive surgery was going to be cancelled for three months due to the coronavirus. So near and yet so far...... 

I am telling myself that it is better to have it in a safe environment, but I am gutted and empathise with your situation too.

Best wishes

Jane xxx

[Bozzley]

Hi Simmo,

Thank you for the good luck. I have everything crossed.

I hope that Monday goes well for you. Let me know how you get on

Sharon x

[Simmo]

Really happy for you Sharon, keeping everything 🤞for you xx

[Bozzley]

I am in Cheshire, the other end of the country. My sister-in-law lives in Hartford.

I have just had a phone call from the hospital they have a cancellation. So I am, at the moment, having my surgery on Wednesday. They are doing the reconstruction if all things stay the same and they have the bed

if not then they will just do the mastectomy.

I am scared that it will be cancelled but just hoping and staying away from people

Sharon xx

[Simmo]

I’m on the Essex and east Hertfordshire border but am being seen at Essex hospitals- where are you Sharon? X 

[Bozzley]

You are so right Simmo, it is **bleep**ty awful

I don't have a date yet and have been told the middle of April unless there are any cancellations.

I was told that once things are back to normal that they will prioritise me for reconstruction but this is the NHS and there is always a waiting list. They have said that the most it will be is a year.

Yes I will need the other breast reducing too

It is all such a mess

What part of the country are you?

Sharon x

[Simmo]

Oh Sharon it’s just bloody **bleep**ty & awful! I also feel so out of control that’s one of the hardest parts.  What date is your surgery? One of my concerns is that the list will be so long for reconstruction on the NHS it could take years.  I think the only way reconstruction will be possible will be privately.  Also it will mean my other breast will need to be reduced so that’s 2 more surgeries.  😢😢

[Bozzley]

Hello Simmo,

I am so sorry to hear that you are in the same situation.

I have just come back from the hospital to pick up my 'soft replacement boob' to put in my bra after the procedure and when she handed it to me I just sat and cried. Poor woman didn't know what to do.

I think you are very brave thinking of postponing the operation. I am more scared of the cancer and what will happen in the meantime. I feel the biggest problem is we don't know how long this crisis will go on for.

I am most struggling with the not knowing and all the decisions being taken away from me. At the moment I am still down for a reconstruction but that may change and I don't have a date for surgery.

It is so hard

Thank you for replying it is nice to hear from somebody else who is going on the same journey

Sharon x

[Simmo]

Hi Sharon,

I had the same happen to me today.  They cancelled my reconstruction surgery and have reverted back to a mastectomy only due to the virus.  I feel your devastation, this is not an option for me.  I’m also quite large and it makes me feel physically ill at the thought of being flat one side.  I’m meeting with my cancer surgeon Monday to discuss further.  I’m thinking of riding this out and seeing what the risks are to wait a few months for the virus situation to have calmed down.  I’m grade 2 so need to know if that’s an option.  

im so sorry to hear you are in the same position it’s all just really crap 😢

sending hugs

Simmo x  

[Bozzley]

Hi all,

I am recently diagnosed with a DCIS which is 10cm big after a routine mammogram, I have no signs at all and it has come as a complete shock. I was told that there is no option I have to have a full mastectomy.

I have a lovely breast care nurse who is helping me through this and together we decided the best option for me was a reconstruction at the same time. I decided that I preferred the idea of the DIEP and was referred for that procedure to Wythenshawe with an appointment this week.

Today however they have rung up to say that they have cancelled all DIEP for the next 3 months due to the coronavirus. I have now been referred back to my local hospital. My nurse got me an appointment today and they said that they will go ahead with the silicone implant and if I am not happy this can be changed at a later date for the DIEP. I was okay with this not what I would have wanted as it requires two surgeries instead of one but at least I still get the reconstruction.

Then they dropped the bombshell that they can't say for sure this will happen and if the coronavirus situation worsens there is a possibility that they will have to do the mastectomy without reconstruction. They would then do a reconstruction at a later date when everything is back to normal.

I am devastated this was not what I wanted at all and feel like everything is out of my control. I am quite large breasted and I find the idea of having only one really hard to come to terms with.

My emotions are all over the place and I don't know what to think anymore. Thanks for reading, it does help to get it down.

Sharon xx