Recently diagnosed with DCIS and 6 months pregnant
Dear all,
I just found this website and discussion board and was trying to get info about DCIS, especially during pregnancy. I'm diagnosed with stage 0, grade 2, lesion of 1.1 cm (ES/PS+ 7/8, HER-2 + or ++) along with a similar lesion in the same breast (left) which they believe is benign (Adenomyoepithelioma - ES/PS+ 7/8, HER-2 ++). I'm booked in for lumpectomy for 2 lesions and sentinel node biopsy on 29/1. Have various tests on 27 & 28. Things are complicated due to baby (was shocked to find myself pregnant at 43/44!) as I need to have surgery done 6 wks max before birth incase I need radiotheraphy. Baby will be around 30 wks on 29/1. If anyone would have advice or questions I should ask beforehand I'd be really grateful. I meet my gyne on 5/1 and will ask her about genetic testing, hormone receptors, etc. I also meet Anaesthesist on 7/1. If anyone would have any suggestions for questions that would be appreciated. Thanks very much in advance for you kind advice and support.
Comments
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Dear Mellie361, We are sorry that you are dealing with DCIS during your pregnancy. What a difficult time this must be for you to have to make so many decisions.While you are waiting for some responses here you may want to check out this topic on Diagnosed during Pregnancy. It is an older topic but you may be able to connect still with some of the posters. Keep us posted. The Mods
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Bumping for more responses
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Hi Mellie:
Sorry to hear of your diagnosis at this time. I was 52 at diagnosis, so I don't have any good information for your special circumstances.
However, many find this post from Beesie to be very informative:
A layperson's guide to DCIS (scroll up to the top of the page to read the original/first post):
https://community.breastcancer.org/forum/68/topic/...
Best wishes,
BarredOwl
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Dear BarredOwl,
Thanks so much for your kind reply and support which is greatly appreciated. I actually found that link by chance on Monday night which was great as I learned so much from it and it helped me to better understand my pathology report. I have it bookmarked to refer back to!!
It looks like my surgery might be postponed till mid-February so that the baby can be born at 37/38 weeks which would be safer. Just hoping and praying there's no IDC in there with the DCIS..
Thanks again for your kind support.
Warmest wishes,
Mellie361
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Hi Mellie:
I bookmarked it too! Although scary and upsetting, DCIS is not an emergency. I would not be worried about a two-week wait, especially for such a good reason.
Did you notice these comments from Beesie about the possibility of avoiding sentinel node biopsy:
"- Checking the lymph nodes, i.e. a sentinel node biopsy, is not required for those who have pure DCIS. However women who have high grade DCIS have a reasonable risk that some invasive cancer might be found in the final pathology; because of this, sometimes an SNB will be recommended (note that it is current practice to check the nodes if any amount of invasive cancer is found). An SNB is really not necessary when someone is having an lumpectomy, because an SNB can always be done later if any invasive cancer is found, but is more important for women having a mastectomy because an SNB cannot effectively be done after a mastectomy. Current treatment guidelines suggest that women with DCIS who have a low risk that invasive cancer may be found (i.e. those who appear to have a small amount of lower grade DCIS), do not require an SNB even if they are having a mastectomy. Current treatment guidelines also do not suggest having an SNB for anyone with DCIS having a lumpectomy or on the prophylactic side for anyone with DCIS who is having a BMX."
Even though only one to a few nodes may be removed, sentinel node biopsy (SNB) presents a low risk of lymphedema. The risk is life-long. For more about lymphedema risk:
http://www.stepup-speakout.org
Because of this, some patients diagnosed with pure DCIS choose to have lumpectomy alone (without SNB) and to await the results of the surgical pathology. If invasive disease is found, then the SNB is performed in another procedure. But if no invasive disease is found, one can avoid the SNB and its associated risks entirely.
If you wish, you may want to inquire with your surgeon why SNB is being recommended in your case (a) for the DCIS breast; and (b) for the breast with the benign Adenomyoepithelioma. Ask if you can safely elect to defer and possibly avoid SNB on one or both sides (if that is of interest to you). In some cases, the location of the lumpectomy (e.g., tail of the breast) may impact lymphatic flow, so SNB would need to be done at the time of lumpectomy. If the rationale is the convenience of a single procedure, please note that with lumpectomy for DCIS at least, there is always a possibility of a second surgical procedure (re-excision), if the surgical margins are not adequate. In any case, by inquiring you may learn more about the basis for the recommendation for SNB, and make a more informed decision about what is best for you.
Keep us posted.
BarredOwl
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Dear BarredOwl,
Thanks very much for your helpful reply. Since I last posted the timing has changed for the lumpectomy which will now be on 19/2. The baby will be delivered by c-section 4 weeks later at 37.5 weeks and I would start radiotherapy 2 weeks later if necessary. I think she does the sentinel node biopsy on 19/2 to avoid bringing me and baby back in for 2nd surgery with general anaesthetic, etc. She warned me that there could be IDC with the DCIS..which is worrying as time is passing since biopsy (11/12).. I told her to take very good margins also for the AME which can be problematic..
Anyway I just wanted to let you know the latest. Alls ok otherwise. Finishing up work at end of the month which will be a relief as very busy there and carrying around a sizeable bump these days so very tired ;-)!!
Take care and thanks so much again for taking the time to reply to me.
God bless,
Mellie361
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Dear Mellie361:
I was thinking about you, and thank you very much for your update. I am glad all is okay otherwise, besides very understandable fatigue.
In her layperson's guide, Beesie explains that the incidence of having some invasive disease is somewhere around ~20% among those diagnosed with DCIS by needle biopsy, so the odds favor pure DCIS, which is good to know. She also explains that if present, the invasive disease is usually very limited/small. Still, worrying about the presence of some invasive disease was one of the hardest things for me during the wait for surgery and the pathology results.
I will keep you and the baby in my thoughts and prayers.
BarredOwl
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Hi BarredOwl,
Heading into THE week now so things are becoming more realistic.. I have Mammogram & Ultrasound tests on Wednesday morning and go into hospital Thursday morning ahead of operation on Friday morning..The 'bump' will be 33 weeks tomorrow so will finally meet him on 16/3 if all goes well please God.. I haven't managed to find anyone else who's pregnant/has DCIS but following all the stories going on in this DCIS forum for the moment and thinking of those concerned.
I'll keep you posted on how things go. It will be a long wait for the results..hopefully my surgeon can tell me something after the operation about the nodes, actual size of the masses, etc.
Wishing you a lovely day/evening.
Mellie361
xxxxxxx
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Hi Mellie361:
Thank you for your good wishes.
I felt tremendous relief after surgery. It was the best rest I had in months, I think! (Then came another wait.)
Will be thinking of you on the 19th, and continuing to keep you both in my thoughts and prayers.
BarredOwl
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Hi BarredOwl,
Finally had Mammogram today which showed up microcalcifications throughout left breast.. Surgeon will now remove quadrant (13 cms area) as area bigger than previously thought.. 50/50 for DCIS or DCIS with IDC. Probably looking at mastectomy 2-3 months after baby is born.. Right breast looks fine thank God. Op will be more complicated than expected. Results will be there next Thursday afternoon. Will keep you posted.
Thanks very much for your prayers!
Mellie361
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Mellie, I'm so sorry that you are going through this. You have a lot to think about in this last trimester. Best wishes on Friday, and rest well over the weekend. Fingers crossed for clear margins and a good path report. I had 7cm of DCIS all throughout my left breast but no IDC was found, and hopefully your situation will be the same. Sending you the best thoughts...
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Hi Mellie:
Glad the right is not showing anything else.
I hope all goes well on Friday, and I'll be hoping the best possible results for you.
BarredOwl
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(((mellie))) Just wanted to give you an extra hug and wish you well tomorrow. No one should have to worry about this crap when they are pregnant and about to deliver a baby. I am just hating on cancer big time because even though I think it should leave everyone alone, in particular it should leave young Moms like you alone and in peace. So unfair but you sound so strong and I know that you will be putting this in your rearview mirror in the future. Best of luck with everything and mostly, with your new baby! Enjoy this time as much as possible.
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Hi guys, thanks so much for your lovely words of support which mean a lot to me. The operation went well on Friday and the surgeon is confident (95%) that the excised sentinel nodes (2-3) are clear. Everything went according to plan. A quadrant of breast was removed and I got the large compression bandage off yesterday. I should be allowed to go home today if all is ok with the remaining drain. Had some serious contractions since Friday night but my little man is staying put for the moment thank God!! He'll have to as im not ready yet!! Hes 34 weeks today. Waiting for results and treatment plan this Thursday which will also mean a final decision on how and when baby will come. Will keep you all posted.
Big hugs,
Mellie361
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Hi Mellie:
Very glad to hear from you, that the operation went well, and the findings look good so far. Hope the drain cooperates, and you (and he) get to go home today.
Thinking of you,
BarredOwl
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So glad everything went well! Hoping for good news on Thursday so you can start focusing on meeting this little fella!
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Thinking of you and sending you hugs!
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Thanks so much everyone, nervously waiting tomorrow's results and treatment plan.. xxxxx
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thinking of you mellie!
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Dear all,
The news was not great...both masses were confirmed as IDC (2.5 cms & 1 cm - both ER/PR +) and grade 3..Good news is that the 4 nodes removed were clear. The OS wants to throw all weapons at it to give me the best chance possible, ie chemo, mastectomy, possibly Hercepin if it turns out to be HER+ and possibly radiotherapy after that. Baby will probably come on 20-21/3 and Chemo will start on 15/4. She said it wouldn't be a high dose but 6 mths of it every 3 or 6 weeks. Ill look through the Pathology report tomorrow..can't face it tonight..am numb..but will fight this all the way for my boys...
Hugs,
Mellie
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Aw, Mellie -- I'm so sorry to hear this. It's not fair that you have this on your plate right now! Look at that pathology report later and get some snuggles tonight. Knowing your nodes are clear is a huge relief! The hit-it-hard but not too quickly sounds like a good approach. Best wishes in making all the decisions that are coming up -- that's when I found this board the most helpful. Hugs to you, Mellie!
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Sorry to hear this news, and sending nothing but good thoughts your way. Clear nodes are a good thing! ((HUGS))
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Hi Mellie:
That news was not what I hoped for and was unexpected. The 0/4 nodes is a very good piece of news, and ER/PR positivity gives you the option of endocrine therapy. Please rest and regroup and keep us posted.
BarredOwl
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Mellie, I went through pregnancy and cancer at the same time, I sent you a pm !
I am so sorry you have to go through this. You can and will get through this.
Hugs and positive vibes!
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Hi, Mellie -- thinking about you and hoping you are doing okay. Do you have some folks to help when baby comes and chemo starts? How old are your boys? I hope it's all coming together. Hugs to you!
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Hi LaStar,
Thanks so much for your kind message and for thinking of me. I've been busy with appointments this week and my Mum arrived on Monday from Ireland to help me before the baby's born. I have a big family back home but they all have big families, jobs, etc. The baby is now 35 weeks and will come on 21/3 if not beforehand. My other son is 4 and his other Grandparents will help when im in hospital having baby but they leave for Greece from mid-April till end of September.. For what follows after the baby help will be limited..my hubby works fulltime..but my sisters will come over to help mainly for a weekend each, etc. One will come for a week in April when I start chemo. I think I will have to hire someone to help if possible. We also have to move house in May/June..It's all so overwhelming.. I'll meet with Onco-Psychologist tomorrow to discuss it all.. Still trying to get my head around having chemo as it was never mentioned as an option before last Thurs.. a'way thanks so much for thinking of me and sending big hugs your way!!!
Mellie
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Dear Mellie, you might want to call your local American Cancer Society for some help because my understanding is they have some resources that you might benefit from in terms of help around the house, rides, someone who can clean your house and maybe even babysitting. You are so strong and I am so sure that this baby is going to be born a very lucky child. Hugs and best to you and your little ones!
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Hi Mellie:
I am very glad you are meeting with an onco-psychologist. It is overwhelming even when much less is going on in life.
It sounds like you will have a sister there for your first treatment for support and help. With a sister possibly joining you on some subsequent weekends, please ask your medical oncologist if (in light of the regimen you will be receiving) it would make sense for you to have your treatments later in the week (e.g., Thursday). This is because many report the side effects can be delayed in onset by a few days, and you'd have a sister with you then.
Sending you and your family my best wishes.
BarredOwl
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Hi guys,
Just a quick message to say that I got a good result today for HER which is negative! So no Herceptin! My baby will hopefully be born by c-section on Monday. I have a pet/ct scan on 31/3 and will get the port-a-cath fitted before starting chemo by 15/4 at the latest. Managed to get head gear/wig sorted out so that i'm prepared. Still trying to get info on having home help, etc but complicated here in Belgium. It might be a while before i can get on here but will try to keep u posted.
Big hugs to u all!!
Mellie
xxxxx
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Congratulations on your good news and best wishes for the birth of your beautiful baby! Mellie, my thoughts are with you through this crazy time. I imagine that you will be as tired as a gal can get, but what a sweet blessing to hold that little sweet baby in your arms.
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