Newly Diagnosed with DCIS - so frightened

gladyscat

Hi

I have recently been diagnosed with DCIS (initially 12mm and then post MRI 7.5cm involvement) and am awaiting mastectomy. I was given the option of lumpectomy or mastectomy but due to me being anxious I knew that I could not stop worrying about recurrence if I opted for the lumpectomy. My surgery is due end of November/December.

I attended for the CT yesterday to see if my tummy area is ok for the DIEP flap and then later yesterday I saw the Breast Surgeon (who is removing the tissue and then I have a plastic surgeon doing the recon) as I had a few questions - not related to the surgery as I am fine with than but about the DCIS as I was hoping that he may be able to help put my mind at rest (which is all over the place at the moment).

I asked him what I believed to be quite sensible questions - could there be anything else lurking in the DCIS and how possible could this be given his years of experience - his reply was yes there could be and he would be surprised if there wasnt. Well that did nothing to reassure me at all. I also asked if I could possibly see the image of the DCIS on the MRI as not actually having a palpable lump its hard to get your head round and he said no its not his job to do this, but he attempted to draw it for me and said its like a tree. He is not the easiest to talk to and his responses are very short - leaving you with even more questions that you started out with.

My fear is that the final path report will show something else and that it has spread and I dont have long to live - is this normal thinking? some days I am great and really positive and others I am thinking the worst. I have asked the breast nurse to refer me for some psychological counselling as I am open to anything that can help me get through this.

I am 45 years old and live in the UK so I hope its ok me posting on this forum. I have not found any other forum like this in the UK and posts I have read have really helped me. I would love to hear from anyone else that can offer help or is going through this nightmare too or a similar situation.

Best wishes

Gladyscat

Moderators

Hi Gladyscat, welcome to Breastcancer.org. You have found a great place for information and a place to share and vent! It's totally normal to have fears and many questions at the beginning, but once you have all the information from your pathology report and a treatment plan in place, things will hopefully settle down.

If it helps, you can take a look at the DCIS — Ductal Carcinoma In Situ section from our main site for more information on diagnosis and treatment for this type of cancer. Also great information in the article Getting Your Pathology Report.

We hope this helps! Please let us know how you're doing, and again, welcome to our Community!

The Mods

tlfrank

Your words echo my thoughts. I too swing emotionally from day to day. I have had a lumpectomy so far, and am waiting on genetic testing results before deciding between radiation and mastectomy. (My dad, his mom and his grandmother all perished from colon cancer.) Every twinge scares me and I am so afraid that more cancer is yet to be found or is continuing to grow undiscovered.

I'm sorry I cannot offer you re-assurance, but I can offer camaraderie while taking this journey together.

gladyscat

Hello tlfrank

thank you so much for your kind words. Its all such a scarey time isnt it. In the UK they dont seem to do the genetic testing before surgery or if at all. Its frightening to think that there is something there which you have no control over - I think every day that I am so glad I nagged and nagged at my GP to refer me for whatever it turns out to be would not have been picked up for another 4 years when routine mammograms happen here.

I know what you mean about every ache and pain - my mind starts racing and then I google stuff and that's it.

Thank you again and I am here to support you also in our journey.

gladyscat

Hello

thank you so much for your warm welcome and for pointing me in the right direction and reassuring me that my fears are normal. Just waiting for a surgery date and then thats a huge step on my journey. One day I want to go to sleep and wake up not thinking about BC.

Best wishes

TrmTab

Gladyscat

Everything you are feeling is normal. I was diagnosed two years ago and don't think I had a full night sleep for months, would wake up and the wheels would start to turn!

I chose lumpectomy first as this gives you more options later if the pathology warrents it. I had 2 LX without clear margins before having the MX, but the pathology at each LX showed only DCIS, so at MX I did not have any lymph nodes taken...which means I have been saved from lymphodema issues.

Sounds like you have a real Doc Martin for a BS, sorry for that, but many of us are not fond of our surgeons and envy those who do. With my PS, I feel like I am in an episode of Pride and Prejudice...he is either too arrogant or too prideful to explain or in my case when he made a mistake, apologize or take ownership of the mistake. I share that not to make you feel bad, but to let you know that this is the fight we have and those here at this site will always listen and answer the best we can.

TT

Sourisou

Gladyscat, I just want to wish you all the best. I'm in the same boat as you, recently diagnosed with DCIS, mastectomy coming next Tuesday. Like you, I'm scared they will find more "stuff", but I guess it's a normal reaction. I'm sorry your surgeon is not very open, we are caught in such a whirlwind of questions and fears! This is why this board is so helpful for me - there are some very informative threads in the DCIS forum and great members to talk to, it helped me a lot to learn about and accept my diagnosis. I'm sending you a big hug!

PS is your avatar your cat? Very cute!

gladyscat

Hello Sourisou

thank you so much for your kind words and message, I have found such support in this community, its wonderful.

I have just been called with an op date of 22 November - maybe as i moaned about the BS earlier today it may have helped get me sorted out, so at least I have that date now. Phew!

Its the unknown thats the such scary part isnt it - really plays with your mind, its horrid.

Yes thats my cat, Gladys, she is very funny and sweet, bless her. She is 3.5 years old and we adopted her from Croatia. She has a slight disability with her back but you would not know it the way she flies round after spiders and flys and things which are not even there lol.

Good luck with your surgery, please let me know how you are.

Thank you again for your message.

sierramtngirl

hi Gladys. I think we are in a similar situation. I've been diagnosed so far with grade 3 DCiS from calcifications on mammogram. Mine is a 2x5 cm area based on mammogram. I've not had an MRI because I opted for a bilateral mastectomy for the same reasons as you. I'm so afraid of all the same things you are. I'm scared that it will be more than dcis, and that something will Be found in my lymph nodes, and that I will die from this too. I have three small children under the age of 5 (I'm 39)and I literally cannot think or see straight.

I'm so glad you have a surgery date. I hope to hear about my surgery soon. Good luck and keep in touch.

NicolaSue

Hi Gladyscat,

I'm sorry about your news. I too am in the UK. I don't have DCIS but I have LCIS and it took me a while to get seen by the right people. Where are you based and which hospital are you under?

I was initially seen locally but based on what I read on these boards I was not confident that the local team was giving me sufficient information or rights to participate in the decision making so I changed to be under a London cancer hospital and this had made a huge difference. I have also had a private consult to give me the opportunity to talk through things a bit more. If you want any names or numbers do PM me (though obviously as you know we can't actually say we recommend people on these boards, only that we have had okay personal experiences).

Please don't panic. Get all the information you can and ASK A LOT OF QUESTIONS. I've observed here that in the US people seem to have longer with doctors and generally get more info than we do. I think we have to be quite assertive here.

Keep strong and get as informed as you can be.

LAstar

It is completely normal for our minds to travel to the worst outcomes -- we have all been there and can still go there on occasion. There are many great stories of effective treatment for DCIS. I am over 5 years out from my BMX and have had no problems (other than complication with reconstruction). My grade-3 DCIS was spread throughout the breast. I had 2 unsuccessful lumpectomies before opting for BMX. Getting a clear pathology report was a huge relief. A majority of us get this gift. Stay busy, exercise, and get your house in order and the days will fly by. Best wishes for a smooth recovery and a great pathology report!

kalenji

I was diagnosed with Grade 2 DCIS from mammo and 2 biopsies in one quadrant of my right breast, estimated 4 cm. My breast surgeon recommended mastectomy as he felt that it would likely be pervasive. He kept assuring me that DCIS had a > 99% survival rate. He talked a lot about DCIS, and about the op. I didn't ask him whether it could be more than DCIS, but I wondered about that <1%. I should have asked him more questions but I wasn't in the right state of mind.

While recovering from my mastectomy, I read and gained a lot more info from this site. I read about what I needed to do for a smooth recovery - getting my arm motion back, taking care of the drain and scar, preventing lymphedema. But I also learnt that my pathology could show more than DCIS, which worried me. Occasionally I would think about some worst case scenarios. Not that I feared dying, but that I might have to suffer through chemo and radiotherapy, and how I could cope, who would take care of my family if I had to go through treatment etc. My pathology report only came out after a long two weeks' wait. The DCIS was 10 cm. Even with such an extensive area, I was blessed that it was pure DCIS. No invasive cells, no lymph nodes involved. Great relief. I was 45 years old.

Worrying is normal. Just don't let it overwhelm you. Best wishes.

gladyscat

Hello LAstar

thank you for your message. Is the "oh my goodness what else could be hiding in the DCIS" that scares me beyond belief. I go to sleep thinking about it and wake up thinking about it. I spoke with my BCA yesterday and she said that if it is something else having the mastectomy will get rid of it from that area. But then I worry that it could be somewhere else. Being given such little information by my surgeon is awful whereas the plastic surgeon on the other hand who has the job of rebuilding could not have been better explaining everything in more detail - he was brilliant.I just cannot wait for surgery on 22 November.

best wishes

gladyscat

Hello Kalenji

It was such a shock after I had the MRI to find out that the area was much larger and I think that is what started my mind racing and asking questions and I wish I hadnt now as I felt worse on monday after asking questions than I did before. I too worry about the what if's and worst case senario and get in a right state.

My partner and I are going away for a few days break next week and cant wait - lots of long walks, no internet and no appointments - bliss.

thank you for your support

Tina1013

Hi gladyscat,

I too was recently diagnosed with DCIS. I am having a DMX on the 13th. They are also doing a sentinal node removal because my nipple is slightly inverted, and my breast has an indented line going from the nipple down to the bottom. He is concerned it might not be DCIS when he goes in.

The waiting is excruciating. Always!!! for results, for surgery, then for more results. I totally understand. They didnt find mine on a mammo or US, but did on a MRI and I had a MRI biopsy. it was a lot of waiting. We are all in the same boat and can rely on each other. I am 52 and cant really believe it.

stay strong and positive. Positivity is the key.

gladyscat

hello Tina 1013

thank you for your message. Its a scarey time isnt it, although I have found some great support on this site and really positiveness. I am having some sort of removal I think he mentioned the sentinel one, my surgeon said its his standard. I have my pre assessment appointment this friday and also I am meeting with a therapy advisor to try and help me with me irrational thoughts so I am looking forward to that and any tips to help me.

I am 45, 46 on 14th and cannot believe ths last couple of months - its a very odd and frightening experience for all of us. Please let me know how your surgery goes (send me a pm). I wish you all the luck and sending you a hug!

Gladyscat

Tina1013

thank you. I will let you know how everything goes next week. It's crazy that this is happening. It just hits me sometimes.

cincoop63

Hello, So you did not get any chemo? I had 6 months of it and it made me deadly sick, hospitalized 3 times and quaranteened from others because I had no immune system left, 3 blood transussions and some more stays for no white blood cells and infections, still doing chemo 9 months later but not as agressive and getting masec this coming tuesday and I am so afraid what they will find as mine is also in my lymp nodes, oh and 33 radiations next month. How could we not be afraid when we have no control over the cancer. Did you have chemo also?

MTwoman

cincoop, so sorry that you had such a hard time with chemo! This is the DCIS forum and current NCCN guidelines do not recommend any type of chemo for DCIS. There have been some trials for Herceptin for HER2+ dcis, but it is not used for treatment outside of those studies. Right now treatment options for DCIS include, surgery, radiation and anti-hormonals.

NicolaSue

Hiya Gladyscat

Really pleased you are through surgery. You've sent me a PM but for some reason it says your settings have changed and I can't reply to it. So perhaps you need to re set something.

Hope it went as planned. Thinking of you lots. I've posted on another thread too so hopefully you will pick up that PM isn't working at your end at the mo.

Much love!

gladyscat

Hello NicolaSue

I dont know what happened with my messages but I think I have sorted it now and have replied to you. Thank you for letting me know.

Gladyscat

gladyscat

Hello Tina

How did things go? I was discharged from hospital on Saturday and am now at home following right mastectomy for DCIS and immediate reconstruction. The hospital were amazing in ever way and I was on a ward with two other ladies, same age having similar procedures, so we were there to support one another through the scarey and funny parts. I cannot belive how mentally I feel so much better since the operation, I thought I would be far worse than I am as I was in a very low place when I was first diagnosed in the summer. I have surprised myself. I think its the support from the ladies on this site and also being able to talk to friends and colleagues really does help. I know I have a long way to go yet but each day I cherrish so very much.

Sending you a hug from the UK

Gladyscat x

LAstar

Welcome to the other side, Gladyscat! There is great relief when the surgery is behind you and the cancer is out. I hope you recover quickly and are happy with your reconstruction. Rest well.

gladyscat

Hello LAstar

thank you for your post. Yes there is HUGE relief once you have had the operation.Next week at some point I will get the results - although I am not fearing them so much now and any further treatment I may need as I first did. I have come a long way in such a short space of time and learnt so much. What has really helped me is the support and friends I have found on this site - thank you. Knowing you are not alone is so valuable and important.

Hugs Gladyscat x