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Anyone with DCIS who hasn't had radiotherapy??

63 REPLIES
Member

Re: Anyone with DCIS who hasn't had radiotherapy??

I had call back following a routine mammogram, had something called microcalcifications showing on mammogram, had 8 biopsies taken, and an ultrasound - was told had dcis and needed surgery - wire guided wide excision removed 11mm tissue and clear margins no lymph nodes affected no radiotherapy required nothing else required apart from annual mammograms at breast care centre for 5 years am told prognosis is good but no guarantee it wont return either same place or elsewhere. If i am over tired i ache on side where surgery was done and do have worries about next mammogram in new year however have to say the care recieved from breast care team was excellent. We have to put our trust in them as this thing is totally out of our control and the fact that they continually follow up and keep watch over us is reassuring because i would never have found this myself and who knows what could have happened. I am so grateful these people are watching out for us all and just want to say good luck to everyone going through this frightening and very worrying time, trust your team listen to their advice, ask lots of questions and use the forum to find lots of useful tips and advice from those having similar experiences and lastly big hugs to everyone having to go through this awful time we are all stronger together x
Member

Re: Anyone with DCIS who hasn't had radiotherapy??

RT is not usually required when having had an mx due to the mx removing everything. That's not always 100% as I understand it but RT unlikely. And the fact I had 0.4mm invasive inside of 51mm DCIS, means that was removed as well, as the whole breast was removed! So still not expecting RT.

 

There are tests done on the tissue removed to see if any receptors are Oestrogen receptive or Progesterone receptive - our bodies have both hormones naturally and depending if those receptors are positive or negative, then if postive hormone treatment may be given (eg two examples are Tamoxifen or Anastrazole). Now with an mx shoulnd't be required as, again, everything was removed in the affected breast, but in my case I have a 4x higher chance of BC in my remaining breast (possibly due to the 0.4mm invasive but will need to check again with my consultant) and if the receptors in my left breast were ER positive then I would have hormone treatment to reduce any risk of BC occurring in my right breast.

 

That's my understanding but I may have misunderstood something or remembered it wrong, but that's the gist. I'm sure some other lovely lady can explain better than me. And you can look at some articles on here: https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

 

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi Jane

 

I've just noticed your post on this thread (I tend to concentrate on the Surgery one).  Does this mean that you may need radiotherapy after all?  Also, what is ER and PR?  It mght help me to be more prepared for my appointment.

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

As we saw on another thread, Linda, we had the same procedure around the same time, but my SNB was back in June - 3 nodes removed and all clear.

 

However results from the mastectomy showed 51mm (not 50mm as originally thought) of DCIS of which 0.4mm was invasive. I also had some Lobula Neoplasia (LCIS) which was benign.

 

Right from the outset my consultant didn't anticipate RT or chemo for me as usually that wouldn't be required after an mx as everything would have been removed and anyway DCIS was non-invasive.

Said that, an appointment is being made by my BCN for me to see an oncologist by end of September, as later this week I will get the results back showing if I'm ER, PR or neither.

 

There's no set treatment path plan for all, it's, obviously, different for each woman as we're all different, just guidelines as to what could be expected after reviewing individual details, and extent of horrid stuff etc etc.

 

Hope you get good results at your appointment, please let me know. xx

 

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi

I was diagnosed with DCIS in one breast at the end of June and had a mastectomy and LD flap reconstruction 2 weeks ago.  I had a sentinel lode biopsy 3 weeks before my surgery and as that was all clear I was told that I wouldn't need radiotherapy or indeed any further treatment after my surgery.  I'm hoping that this is still the case - I will find out at my appointment next week.

 

Good luck to anyone having to make really difficult decisions xx

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi, everyone, l am 52 and was diagnosed with small area of dcis in right breast at beginning of July this year after being referred to breast clinic for pain in left breast. On getting my core biopsy results a week later l was put in for WLE and was told before the op l may go on Tamoxifen if the cancer was eostrogen receptive,but radiotherapy would only be discussed if needed after the biopsy from surgery. In the event the size was 7mm ,high grade with necrosis and receptive for tamoxifen. I was told l needed radiotherapy for 3 weeks to reduce reoccurrence as well. In was told there was no residual dcis on biopsy but the rads would mop up any that may be there unseen as yet. I will also have mammogram yearly for 5years. I did hear though that not all areas in England  deal with dcis the same, which whilst l felt very lucky to live where l did, being a nurse myself,  that fact really shocked me!! I am not surprised that so many of us in these posts are unsure and getting mixed messages. Al l can say is l have had to put my trust in the recommendation from the MDT as to my treatment plan even thought there is possible side effects from both the radiotherapy and tamoxifen. I believe that the criteria as was explained to me for radiotherapy was high grade with necrosis even though small, also perhaps family history.my mum had breast cancer diagnosed at the same age l am now. Good luck to everyone starting or undergoing treatment, thank you all for sharing your experiences and support on being diagnosed with dcis xxxx

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

I have DCIS, high grade and 5cm. I will be having a mastectomy and LD flap recon on Thursday. Radiotherapy, chemotherapy or hormone treatments are not in my plan as the DCIS is contained and lymph nodes are clear based on all checks so far. Hoping that is still the case when I get the results a week after the op.

 

Good luck with your choice NicolaJC and other ladies in a similar position.

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi, I had the mastectomy then immediate reconstruction with temporary implant (full size). Mine was 8cm and high grade and I’m a c cup. I was not asked or offered radiotherapy at any point. Results came back saying Invasive cancer was found and even then just given Tamoxifen.
Go with what you feel is right for you and stick to it. I’m still battling in with recovery 16 months later and requiring more operations yet so I wish I had stuck to my original choice! Good luck x
Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi everyone. I’m faced with a dilemma of whether or not to have radiotherapy after masectomy and DIEP reconstruction. Did any of you have a mastectomy and reconstruction for your DCIS before you had the radio? My DCIS was large (7cm) and high grade but my surgeon says he feels he got all the affected tissue. I need to give the oncologist a decision but I’m stuck (and scared!).

Thank you!!
Community Champion

Re: Anyone with DCIS who hasn't had radiotherapy??

Do what you feel is right for you Peg & it will be the ‘right’ decision, are no guarantees anyway.
As you say, loads of us make some lifestyle changes after going through this & certainly, being active & the right weight is known to help & everything else in moderation.
ann x
Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi Dizzybee,

 

Thanks so much for sharing your experience and for your understanding.  I guess you're absolutely right that the Consultant would most likely not have said my declining radiotherapy was reasonable, if he thought otherwise. I am still in shock about the whole process, but just cannot bring myself to say yes to radiotherapy.  I may regret it, but right now, it feels right...I think.

 

Thanks for the hug!  I am glad I've posted on this forum, a first for me in any walk of life!  I do feel supported by you and the other lovely women.

 

😊

Member

Re: Anyone with DCIS who has declined radiotherapy??

Hi Kitkat23,

 

Thank you so much for taking the time to run through your experience for me.  It's really kind of you.  It's interesting for me to hear how much more information you have been given after your more recent experience.  I wasn't told mypine would definitely become invasive because of necrosis, which was there.  I just researched online and figured out for myself that it didn't look good.  This helped me decide to have the lumpectomy.  I guess I'm still in denial in lots of ways, as it's all been so quick.  I haven't been given any personal percentage risks for recurrence.  But what sticks in my mind is that having radiotherapy reduces the risk by 50% and doesn't take it away.  Since I got the first call, I've made radical lifestyle changes, like finally stopping my small smoking habit, radically cutting down my alcohol consumption, eating less to get my weight down from overweight and eating mainly organic vegetables and whole grains.  I know it's not a guarantee, but it helps me feel more in control.  As you rightly say, everyone is different and has different experiences.  But thank you for sharing your experience, it touches me greatly.  

 

😊 

Member

Re: Anyone with DCIS who has declined radiotherapy??

Hi Peg

Just to share my experience with you, but as you say, everyone’s experiences, however similar they seen, will never be exactly the same.

I had a benign lump removed 2012, nothing else could be seen on mammo or ultrasound. Nothing else seen in core biopsy results.

After the WLE surgery, my results showed a 4mm low grade dcis as well as benign tumour.

I was told no other treatment needed as good margins and extremely unlikely to ever have recurrence due to size and grade. Had yearly mammograms.

Fast forward to this year, 4cm , er positive high grade comedo DCIS recurrence at exact site of last DCIS (found 13 months after last mammo was clear). Had been having breast pain so gp referred me back to breast clinic as a precaution given my history however neither he or me were particularly worried.

This time round I needed mastectomy and sentinel lymph node removal as DCIS more widespread and 5 years of tamoxifen to reduce risk of developing cancer in remaining breast. Was told that I was ‘lucky’ as breast pain was likely linked to menopause and if I had not had this pain and been referred , then the DCIS would have definitely become invasive as there was necrosis, before I had any symptoms such as a lump to alert me.

I know none of us have crystal balls but if I had been offered rads back in 2012, knowing what I know now, I think I would have had them.

But at the time that was the MDT best interest decision for me and I went with their decision. I guess I was just unlucky to have a recurrence but lucky it was DCIS again only.

This time round I was told I have a 13% chance of developing DCIS or invasive again, however tamoxifen will reduce this to 7%. Given that in 2012, I was told I had a 1% chance of recurrence, there is no way I won’t be taking it.


I wish you the very best of luck and whatever decision you make, then move on with your life and have no regrets, because that decision will be the ‘right’ one at the time.

X x
Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi Peg

When they first told me at my mammogram recall that I almost certainly had DCIS, they said I probably wouldn't need radiotherapy. Later it turned out I had a much larger area than first thought, and it was high grade, so I did end up having it. But obviously they think it's fine not to do it for everyone.

My sister also had DCIS nine months before me, and she didn't have radiotherapy, they told her the risks outweighed the benefits. So I think it may be more common than you think not to have it. I'm sure your medical team would be a lot more forceful if they felt it wasn't a reasonable risk.

 

Having said that, I'm glad that I had radiotherapy, I didn't have any side effects from it and I'm more comfortable knowing that I've done everything  I could to avoid a recurrence.

 

I think these decisions are really difficult with DCIS because of the issue of over-treatment. In the end, I think you just have to rely on your medical team, and what you're comfortable with.

 

I remember well the turmoil of the early days, it's so difficult making these decisions when you're feeling overwhelmed by everything that's happened to you,  sending you a hug.

Xxx

Member

Re: Anyone with DCIS who has declined radiotherapy??

Thank you Ann 😊

Community Champion

Re: Anyone with DCIS who has declined radiotherapy??

Goodness Peg, of course we will be gentle with you, it is about sharing experiences & supporting each other here after all 😊

Mine was a small invasive bc, so I did have rads, however, as you say, it is more of a grey area for you & I can certainly see where you’re coming from & I may have felt the same in your position. 

You’ve taken advice from your surgeon & s/he sounds like they are happy with whatever you will decide. 

Hopefully one of the other ladies who’ve been through similar will be along to share their experience.

ann x

Member

Re: Anyone with DCIS who has declined radiotherapy??

Hi there, first post and needing support and information.  After call back for my first post 50 screening mammogram, 'suspicious' mass of 8mm, which looked like invasive cancer, and 2 small calcifications nearby found on diagnostic mammogram and ultrasound.  Two biopsies taken.  At results appointment was told that it was in fact DCIS intermediate grade.  I was so relieved.  I had a lumpectomy two weeks ago.  Results two days ago: 12 mm with 4mm clear margins, but there was some high grade DCIS.  Couldn't tell me how much. Discussed radiotherapy which he said would be the next stage to help prevent recurrence.  My instinct is not to have it, particularly because the mass was so small, it wasn't invasive cancer, if they do find something again having had radiotherapy, it will be immediate mastectomy, and they will offer me annual mammograms for five years anyway.  Surgeon thought it reasonable if I don't have it and reassured me that if I did have a recurrence it would not be life threatening.

 

I would appreciate hearing your experiences and thoughts, but please be gentle with me, as I'm still feeling very raw and vulnerable.  Thank you!

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

almost the same here Smiley Happy

 

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

Hi, 

i was diagnosed in April with high grade extensive DCIS (8cm), which was over 20% of the breast. I was not given an option but advised I need a skin sparing mastectomy. Post surgery they also found invasive cancer and my only further treatment is Tamoxifen. No radiotherapy as they have taken everything away so no need. 

Hope this helps you. 😀

Member

Re: Anyone with DCIS who hasn't had radiotherapy??

My sister and I were both diagnosed with DCIS within a few months of each other. Hers was 3cm, mine 5cm. She had a WLE, but nothing else. Mine took two goes to get clear margins, and I had radiotherapy and tamoxifen prescribed.

I think the main difference was in the grade, basically how abnormal the cells were and how quickly they were dividing, mine was high grade which made it much more of a risk for recurrence.

They offered my sister a place on a trial where they didn't even operate, just watched and waited to see if it grew. She opted for surgery, but it shows that they are starting to look at whether they should actually treat all DCIS at all.