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Wasn't expecting this πŸ™ High grade DCIS

46 REPLIES 46
Michie49
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi, sorry to hear, please go look at Chris beats cancer,  you will only benefit.

 

 

 

,  

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi Issytay,
I'm so sorry to hear news we'll all be here to support you through it. I've also got high grade DCIS and had to have 2 wle operations to get a clear margin I'm now just waiting for my oncology appointment for radiotherapy. I've found this forum a life saver at times and I love the fact that there is also humor around which I've definitely needed at times. Sending you love and strength Clair xxxx
Charys
Community Champion

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi there Issytay,

 

I really feel for you, after 6 years to have the bleeping thing rear its head again must be absolutely awful. Is it a different type of cancer to last time ? Well. One thing you will know from being here before is the support you can get, during a very trying time in your life. One other thing you know is that you can get through treatment, move on and beat it! I know that will be cold comfort to you right now, but I hope as the shock subsides you are able to regain the strength you must have shown after your last diagnosis. 

 

Xxxx

Issytay8654
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hello I'm new to the forum, after a mamogramme in April I was found to have high grade, wide spead DCIS. I had a mastectomy on 2nd June, for which I had no choice, it had to be done. I am now waiting for a second elected mastectomy on 14th October. I first came to this forum 6 years ago when I had invasive bc. My treatment then was WLE, rads and five years of tablets, which I finished in September 2015. Feel like I'm back to square one at present.

 

Issytay8654
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hello I'm new to the forum, after a mamogramme in April I was found to have high grade, wide spead DCIS. I had a mastectomy on 2nd June and am now waiting for a second Elected mastectomy on 14th October. I first came to this forum 6 years ago when I had invasive bc. My treatment then was WLE, rads and five years of tablets, which I finished in September 2015. Feel like I'm back to square one at present.

 

lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

HI Clair, that's really good news πŸ™‚ I'm so glad things are more settled for now. Liz xx

76Ag
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi Cla46. Glad your results were positive today and no more surgery is required. I am starting 3 weeks of radiotherapy tomorrow after a WLE and a re-excision for high grade DCIS. My oncologist said there was a 15% chance of recurrence. Is that what you were told too?

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

My results were really positive today I don't have to have any more surgery πŸ™‚ I was so relieved it's like a huge weight has been lifted. I'll have 3 weeks of radiotherapy when I've healed and we're going to discuss tamoxifen when I get the histology results back. The consultant did warn me I'm at a high risk of it reacurring in the future but today I'm feeling better about things xx
Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi thank you so much for the link it makes so much sence. I saw the dr today who said I shouldn't even be thinking about work and has signed me off for a few weeks. He told me not to be so hard on myself and to take time to process what's happening. It's like he's given me permission and it's a relief . Our bodies are changed so much through this my shoulder clicks all the time now which my kids find funny πŸ˜€ It's no wonder bits are popping up everywhere I hope your lump goes down soon. I'll be thinking of you Friday xxxx
lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

I think there's this assumption that, once youve got the ops out of the way and are physically healed then its all back to normal and start straight in again with work etc. I think that's when the emotional stuff hits again, and the strain of holding it together through all the appointments and procedures - well, that's how it works for me. I'm seeing my GP on Fri (also got my genetic results Fri) and going to ask for some more time off - my BCN was very supportive of this when I spoke to her about it. I did get my lump checked too - they think its a thrombosed vein which sounds a bit scary but the dr didn't seem bothered about it and said it should disappear with time.

There was a link on one of the posts here to an article about the effects of having had cancer which I found helpful to look through as then I knew it wasn't just me having a bit of a fall apart wobble when logically you would think all should be fine. I know you still have stuff to get through but may be useful?

http://www.cancercounselling.org.uk/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%2...

xx

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi Liz , That's fab news about the biopsy and tamoxifen πŸ˜€
My emotions are all over the place at the moment I feel like I've lost all control of everything. I'm in more pain now than after the op and I still feel shattered. I work in a special needs school and I'm in my last week of the 6 week hols so a lot of my appointments / treatment so far have been in the hols . I'm due back on Thurs / Fri for inset days then of course I'm back in for more surgery on Monday 5th I just don't know wether to go in for the 2 days or not? I do feel a bit pressured to go in as I think everyone thinks I should get back to normal !!( it'll help they say) I've got a Drs appointment on Wednesday so I could see what he says and I'll need to be signed off for 2nd op anyway.
Have you got the lump checked out yet ? its probably nothing but it's the worry again isn't it ? Ive had a few terrible headaches and started thinking all sorts . Xx thank you for being here to listen to my worries xx
lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi, sorry you've got to have (or have had to have) further surgery, it does start to feel like one thing after another doesn't it? I got the results from my second surgical biospy (left side) this week and thankfully it was all clear this time around. Also, following further discussion at the MD team, they are now not even recommending tamoxifen, despite the concern at the previous meeting about not being able to get a clear 1 mm margin for my right side mx. Its a bit confusing but I'm happy I don't seem to need any further treatment for now πŸ™‚ Only slight wobble is that I've now found a lump in my inner right arm, just above the elbow, and I'm trying not to panic that its anything bad...

Also making sure I don't feel pressured (by myself if no-one else!) into having to head straight back in to work mode after several months of this surreal experience.

Fingers crossed for everyone's next results and coming treatment xx

76Ag
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hope they get good clear margins next time round Clair.I am one of the many who also had to have a re-excision to get clear margins as the consultant said only 0.8 of a margin had been taken and this was too close. As you say it's a roller coaster of a ride with always something else to worry about. In my case it's the CT planning scan next week and then 3 weeks of radiotherapy. When I come onto these forums I'm really amazed at the amount of others who have been given the same diagnosis as me, high grade DCIS. When I'm wallowing in self pity it makes me realise I'm not the only person going through this and it also makes me appreciate that the diagnosis could have been much worse. 

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

I had my results on Wednesday. I've got to have more surgery on 5th September as they only got a 2mm margin and they'd like at least 10mm I was half expecting this as it seems to be a recurring theme in other people's posts πŸ™ Then I've been offered radiotherapy and tamoxifen. That's if they don't find anything else in the next surgery. This is such a roller coaster experience and I'm finding it harder than I thought , I know others are going through worse than me but It's just the frustration of wanting to get back to work and some normality. It always seems to get more complicated as I go along πŸ™ I hope everyone else is doing ok much love Clair xxx
76Ag
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi Claire. Thanks for answering my query. I only had a mammogram and an ultrasound before my WLE and re-excision which is why I was a bit concerned when I read about others having had SNB or MRI like yourself to make sure nothing else was being missed. 

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

I didn't have node biopsies when I had my WLE as I had an MRI that showed they were clear. My consultant believes you should only have the surgery that you need and I agree. I worry surgery can release damaged cells into the body to spread xx
76Ag
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Reading a lot of these posts I find lots of people who had a WLE also had a sentinel node biopsy. I am concerned now that I only had the 10mm of high grade DCIS removed and a re-excision for clear margins but nothing else biopsied. Concerned that something could have been missed. Did anyone else have a WLE without sentinel node biopsies?

lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

thats good Clair and glad you're taking it easy after the surgery - I know I feel tired for a few days after a GA and my memory also goes sieve like for a couple of weeks! I get my next lot of results on Mon but feeling quite calm at the moment - thinking it will either be no further significant findings (they were checking margins where they previously found a small area of DCIS) or a bit more DCIS in which case I think they will recommend another mx but I can cope with either of those things. Its amazing what becomes 'normal' as you go through this process isn't it?! xx

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Morning everyone, I'm feeling good this morning glad this bit is over. The op went well Even though the radiographer found another bit of DCIS and they decided to take the 2 bits out! My consultant who is quite funny really said I'm a complicated person πŸ˜€ as I bring up new things every time he sees me ! But that's ok because it means they're looking closely and working well as a team so I feel confident so far. I'm taking everything bit by bit and not thinking about anything else but getting over the surgery. Hope everyone is doing well and sending you lots of love xxx
swampy1901
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi 76Ag

 

Like you I believed DCIS to be the best of the worst case scenarios. It is - as long - as it remains within the ducts but if it has started to break out then the outlook changes altogether. I still find it hard to believe that something that was so small microscopically can have such ramifications but you have to be guided by what the experts say and even they will need the pathology reports to be certain. Each time I have seen someone new regarding my treatment the scenario seemed to get worse - a fact I mentioned to my BCN. She then went through my histology report with me but even that changed as more results came in from further tests. It is bewildering and you are entitled to a rant when the goalposts appear to be moving every time you look at them. DCIS is early cancer and is very treatable - a fact we all have to hold onto in these scary times.

76Ag
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi Clairshortland. Hope all goes well with your WLE and the pathology results after the surgery are good. I have still to get radiotherapy but I am to see the oncologist a week on Tuesday. I think part of my worry stems from the meetings I had with the doctor at the breast clinic who assured me after the mammogram and ultrasound that I had nothing to worry about as the two areas that showed up were benign. A biopsy on one lot showed fibroadonemas which were benign but the stereotactic biopsy showed the calcium deposits to be DCIS which she again assured me was nothing to be worried about. After the WLE I saw the consultant who told me it was DCIS and handed me an after surgery report which said high grade DCIS, radiotherapy to be advised and a re-excision needed for clear margins. It was only after this I went on to websites dealing with DCIS that I found out it wasn't quite the picture I had first been painted by the first doctor at the breast clinic who was a physician. Sorry about the rant. I am going to try to have a more positive outlook as I know DCIS on the whole has a very good prognosis.

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi 76ag , I'm in tomorrow for a WLE to remove a 2cm DCIS I'm hoping that they get it all and yes I'm petrified it'll come back as I have 2 other bits of calcification in the same breast. I spoke to the BCN and she showed me my mammogram and explained that they are different shades of colour than ones that change into cancer although that doesn't mean they won't in the future . She also reassured me that I'm in their system now I'll have regular mammograms and can go direct when ever I feel a change even if it's not a lump but just a feeling and I'll be checked. As I'm going through this I'm trying to go step by step. I find the what ifs the hardest but then I remember I'm lucky to have had this found early and am on the radar πŸ˜€. At the moment I'm still on the waiting game surgery first then results of that to see if Ii have any invasive cancer what sort it is and if I need radiotherapy but like I said step by step for me . Xxx
76Ag
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Is there anyone else like me who had a small area (10mm) high grade DCIS removed then a re-excision to get clear margins followed by radiotherapy worried that because of the high grade they have a higher risk of a recurrence of DCIS or invasive cancer? Most of the posts I read are from those who have had a mastectomy for various reasons for their high grade DCIS and have no concerns about a recurrence.

lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi Clair, so glad you've got a supportive team - my BCN is great too, makes such a difference just to have someone to talk to or go through questions with. Hope all goes well on Mon - I had further surgical biopsy (similar to WLE) on Tues and have had very little pain or physical after effects other than my usual post-anaesthetic woolly head. Still taking it easy tho, careful not to do too much and being aware of the emotional impact.

Let me know how you get on, good luck for follow up results xx

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Thank god for the BCN she was amazing. She showed me the mammogram and we saw the size of the DCIS it's amazing how they found it. She calmed all my fears for Monday now I'm ready to go. If I could give anyone advice it would be please ring your BCN if your worried as they are magnificent. They even spoke to me husband and offered him support to. I hope everyone else is doing ok xxx
Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

I'm having a wobble day today πŸ™ I've got my BCN and pre op tomorrow for the WLE on Monday which means it's really real !! I just want to go away and come back when it's all sorted but it's never going to be sorted is it ! I know it could be worse and it's been caught early but it's the what if's again. I've written some questions to take with me this time for the nurses it's all such a whir when I'm at an appointment I always forget . Sorry I just needed to vent xx
lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

that's good news and now, like you said, you can put things aside a bit and enjoy the rest of the holiday. I'm ok thanks, got next hospital visit for WLE biopsy on Tues but should be out again the same day. Then need to get those results before deciding any next steps - not thinking beyond that for now πŸ™‚ xx

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi Liz , I had my MRI on Friday it wasn't as bad as I thought it would be and I just kept thinking about what you said it'll give a better idea of what's going on so thank you for that advice πŸ™‚ I had my results today and I'm so lucky because it's all contained in a 2 cm area , I'm having it removed on the 15 th August as a lumpectomy then they're going to check it out and see if I might need radiotherapy, I was so worried it had spread. We've gone back to our bb today and I'm going to really relax before the next hurdle xxx How are you ? Xxx
lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi Clair, just wondering how you are doing. Hope you're managing to enjoy your holiday alongside medical stuff xx

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

That's really good news it definitely pays to get a second opinion πŸ˜€ I've had a really good day today, I caught up with a friend who's been through similar bc as me and is 6 years clear ,we'd never really talked about it before as it happened before I knew her, she was so helpful so I'm feeling really positive. I'm off on holiday with my hubby on the 2 August our 1st one alone since we had our kids, I've got to pop back for the MRI results on the 3rd it's a good job we're not going far. What about you? Xxx
lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

thanks Clair, second opinion was really helpful, went from thinking I would probably need further surgery to remove an area of skin (and remove implant) over the site of the cancer to feeling reassured that no further surgery was needed. Am still waiting on further surgical biopsy on left side with consideration of preventative mx because of genetic thing but at least some of the what ifs have been narrowed down for now πŸ™‚

Hope you're doing ok and have some fun things planned for the summer holidays x

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Morning Liz, thinking of you today hope it all goes well xx
Psanchez1000
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Absolutely - I was luckily referred to a psychiatrist as I found the whole experience a whirl wind and too fast. This was a real lifeline for me and can't say how much this little bit of time and extra help with my own thoughts and not just the diagnosis was so important. Hang in there, time really does make a difference.
Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Thank you Psanchez/ Liz I'm making an appointment to see my dr just to talk through a few things, I'm finding that I feel really nauseous after eating and I'm getting really tired but then I can't sleep .. Can't win πŸ™‚ Im not planning on reconstruction as I'm terrified it'll come back again, I know I'm jumping ahead a bit. One minute I think I have it sorted in my head then I change my mind !! I will talk to the consultant and nurses when I know more from the MRI but that's my gut feeling at the moment xxx
Psanchez1000
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi Clare - I had the same in April and I'm now at the beginning of week 3 post surgery with immediate DIEP reconstruction. My care has been amazing, take all the help and advice and importantly allow the TIME that you need, you can be referred to a counsellor if it feels too overwhelming and help you think about options and processing. I've just had pathology results with no micro invasions - i had my sentinel lymph node biopsies a few weeks after the initial diagnosis as knew I wanted to ensure immediate reconstruction was an option for me. Payhology came back as a larger area than the already large area and highest grade that were confirmed from the previous biopsy. Stay positive and you have options and there is light at the end of this.
lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

lol, you sound similar to me, my friends all say you're so strong, you're coping with all this so well. And some of the time I am and some of the time not, back to the day at a time thing. There has been a lot going on this year but some people here have much more to face; having said that, each person is the only one facing their particular situation and feeling what they are feeling if you know what I mean.

Thanks for your good wishes for my appointments, will let you know how it goes. Btw, I had an immediate implant recon - I know you said you had decided on just the mx but if you have any further thoughts and want to ask any questions please do x

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

I really hope it all goes well on Friday and you get some more answers and options, same with your other appointment πŸ™‚ I'm really trying to be positive but I think I'm really just trying to wish it all away by pushing it away. My family and friends have always seen me as a strong positive "she'll sort it "type of person and I feel like I can't shatter that illusion. I'm really good at pretending everything's ok. sorry I've gone on a bit. I have been reading your other posts and you've been through such a lot thank you for taking the time to help me xxxx I'll definitely let you know how I get on keep smiling xx
lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

the letting go of worry thing is difficult but makes each day so much easier if you can put it all down for a while, good that you seem to have reached that place. From my experience it may still be a bit up and down but sound like you are doing lots of good stuff to keep yourself feeling well until your next appointment. I've got an appointment this Fri for a second opinion re any follow up treatment that may be needed on my right side following mx and then date for next surgical biopsy on left side in Aug - again, will worry about each of those when I get to them. Let me know how you get on with your scan xx

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi, I've got my MRI appointment on the 29th July and I'm taking everyday as it comes πŸ˜€ I scared myself a bit by reading to far into things !! No point in worrying until it happens they say ... So I've made a plan to catch up with family / friends . Started a to do list around the house and garden. I've also decided if I need a mx which it looks likely, I'm not going for reconstruction as I want everything to be over and done with asap. thank u for your support I hope all is going well for you at the moment xxxx
lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi 76Ag, yes of course its a worry, I think its hard not to worry about everything with a cancer diagnosis, even if its one with a good prognosis. However, because of that slightly increased risk, I'm assuming your team will be keeping a close eye and therefore very likely to pick up anything that may happen in the future at an early stage. I'm being investigated for a genetic condition which can increase my risk of a range of cancers (including breast) so am looking around for support as to how to cope with that 'what if' worry as I'm determined (well, in my stronger moments!) not to let it dominate my life. Hope you are able to find someone to talk things through with and maybe set your mind at rest a little xx

lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

no worries and yes I hit a really low patch a week or two after the first diagnosis, felt like it was all too much and nothing was going to get better. It really was a case of hanging on in there, seeing my GP and talking to BCN for support and very much taking one day (hour, minute) at a time. I also tried to go for a walk each day, clear my mind and just focus on the sunshine (this was back in May!), birdsong etc, even if for a few minutes. It did get better! Once there was a clearer plan, even if it was not something I would ever have wanted to happen, it gave a focus and felt like someone was doing something to try and sort things out.

Big hugs to you xx

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Sorry I haven't replied I'm just finding everything really overwhelming at the moment πŸ™ Xx
76Ag
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

I was diagnosed with high grade DCIS in June following a WLE on 1st June. Had to have a re-excision 23rd June to get clear margins. Now have to see oncologist 23rd August to see about radio therapy. I know that the prognosis for DCIS is very good but can't help worrying that high grade DCIS has a higher chance of recurring  as either DCIS again or as an invasive cancer than low grade or intermediate DCIS.

lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

HI

I don't mind you asking at all - obviously everyone is different but it does help to hear about other people's experiences. Like I said, I went for my first screening mammogram and got called back within a week - microcalcifications in both breasts but they were most concerned about the right side - several rounds of core then VAB biopsies but I didn't have an MRI. Results showed what was thought to be a 5cm area of high grade DCIS in the right breast and they were unsure whether it may have started to move out of the ducts. Because of the size of the area and I'm small breasted (A-B cup) then a mastectomy was really the only option, with a sentinal lymph node biopsy to check it hadn't spread beyond the breast. I also had a surgical biopsy on the left breast at the same time. Results after surgery showed it all to be DCIS, no spread, but actually 7.5 cm; unfortunately they also found a very small area on the left breast so will need some more treatment for that.

Physically I've found it quite an easy operation to recover from but obviously there is an emotional impact as well so I'm taking it easy and trying to do nice things, spend time with supportive friends, that sort of thing.

Hope that's helpful, do ask if you want to know anything else, hope things get sorted for you xx

Cla46
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi thank you for your message, how are you feeling? I'm trying to keep busy and work is helping a lot, I break up for the 6 weeks holidays next week and I'm hoping that things get sorted asap πŸ™‚ Do you mind if I ask what type of surgery you had ? My nurse has been talking to me about total mastectomy and reconstruction depending on the MRI results. Xxx
lizred
Member

Re: Wasn't expecting this πŸ™ High grade DCIS

Hi Clair

I got diagnosed with high grade DCIS following my first routine mammogram, no symptoms. The first few weeks were a blur of biopsies and results, went from shock to being overwhelmed and  back out the other side as things gradually fell in to place. I had surgery two weeks ago. It is a difficult time, take all the support you can get, good that you have supportive hospital staff, don't be afraid to ask questions or talk things through with them. Hope everything goes well for you and is as straight forward as possible xx

Cla46
Member

Wasn't expecting this πŸ™ High grade DCIS

Hi, I've just been diagnosed with High grade DCIS 13/7/16 which was a bit of a shock as I'd only had an achy pain in my boob! I went for assessment and was told that it all felt OK and to have a mammogram just to get checked out . Mammogram and ultra sound found calcifications , again I was told they look benign so don't worry . A few days later I was asked to come back and have a biopsy which then revealed this little nugget ! The staff at the hospital are fabulous , informative and really kind and although I've started off really positive I'm starting to have slight panic attacks. I'm waiting for an MRI scan then surgery , I was told that it all looks contained so far but I'm worried the MRI will show something more . πŸ™