Diagnosed with DCIS: How do I decide on treatment?

Posted by tctredwell1 @tctredwell1, Aug 23, 2022

I was diagnosed with DCIS. I have to go in for a breast MRI with contrast tomorrow to see how active the cancer is. If it’s contained and not very active, do I have to have a lumpectomy?

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@tctredwell1

I spoke to my doctor and he said testing like that would be a discussion for the oncologists after the surgery at my follow-up appointment in November. As far as how I’m doing - not so great. I got home last night just feeling a little shaky and then things got worse. I tried eating a few saltines and a little while later I threw up and up and up. Thank goodness I had a plastic waste paper basket next to the sofa. I’ve been nauseous, shaky and weak ever since. And then there’s my right breast - a partial mastectomy was performed on it and now it’s huge, hard and bleeding! I called the doctor last night and he said to put gauze over each incision and then put tape on each very tightly. When I tried to get up the feelings of nausea and weakness were overwhelming and I almost fell down. I gave up trying to get to the closet and went back to the sofa. I have a stack o Bounty napkins on my coffee table so I’m using them under my now giant breast to sop up the blood. The blood is in big blotches - it’s not running.
(I had a hysterectomy last October at the same facility and did not go through this. I had pain and had to pee all the time but no nausea. I’ve never had nausea like this before.)
Last night I had to sleep/rest sitting up to stop the nausea and shaking. Today I’m kind of lying down with my head up high leaning against a big pillow on the armrest still feeling nauseous, shaky and weak. This morning I tried a few ounces of flat, warm Sprite and the nausea came rushing back. I sat with my head down until the nausea passed. An hour ago, I tried one Saltine and almost threw up again. I’ve spoken to 2 nurses this morning and they will get back to me as soon as they talk to the doctor.
Sorry for such a long post. I’m hoping someone/s from this support group can help me. Thank you for listening.

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I am so sorry this has happened to you. In my opinion, your doctor needs to see you ASAP.

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@margo19

I am so sorry this has happened to you. In my opinion, your doctor needs to see you ASAP.

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The suggestions I got (a few minutes ago) was to take the anti-nausea medication they called into my pharmacy. They also said to patch up the incisions with gauze and tape, but standing up is still iffy!
They also said I could go to the emergency room here in Jersey City which is a hell hole.
I sure hope the anti-nausea medicine helps!
I have to call my pharmacist now and make arrangements for delivery. Wish me luck!

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I hope it works. Why won’t the doctor see you in his, her office? That horrible.
I really hope you are on the mend today.

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@margo19

I hope it works. Why won’t the doctor see you in his, her office? That horrible.
I really hope you are on the mend today.

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The anti-nausea medicine is helping but if I stand or walk (very slowly) for more than a few minutes, the trembling and nauseous feeling starts up again.

My right breast isn’t bleeding as much and I was able to cover the incisions with gauze and tape, which helps me feel more comfortable, but my breast is still huge and hard. The doctor said a lot of material was removed and fluid is filling up those areas.

Has anyone else had this experience?

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Hello I hope all surgery results and pathology come out well for you.
I had 4 drainage tubes when I left surgery to collect the fluid. Do you have drainage tube at least 1?
You should be seen, possible infection is what to worry about, they can run a culture to find out. Infectious disease or pain management teams (nurses) can help with symptoms.
Also, did they ask you to wear compression garment? This helps with fluid build up-

Sorry - you are in discomfort

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@tctredwell1

The anti-nausea medicine is helping but if I stand or walk (very slowly) for more than a few minutes, the trembling and nauseous feeling starts up again.

My right breast isn’t bleeding as much and I was able to cover the incisions with gauze and tape, which helps me feel more comfortable, but my breast is still huge and hard. The doctor said a lot of material was removed and fluid is filling up those areas.

Has anyone else had this experience?

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I had a lumpectomy on 9/21 for DCIS. My breast also got very firm, huge & developed a Seroma. My breast sounded like a half full milk jug, with the built up fluid making sloshing noises every time I moved. The Seroma will eventually reabsorb in your tissues BUT if it’s becoming painful with the swelling that accompanies the fluid your surgeon can drain it. They don’t like to do this since it can lead to an infection. I had my surgeon drain it on my post op visit. It did return but it wasn’t as much fluid & it seems to be going away now. From my research this happens 30% of the time after a lumpectomy so it’s “normal”. I found it helpful to keep icing every 30 min on/off for the first 3 days. The ice felt wonderful! I also wore a very supportive/compression type bra 24/7 for the 1st month. I hope this helps & you start feeling better over the next few days. Try not to take any type of pain reliever that would cause blood thinning which will add to the problem.

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@rene1636

I had a lumpectomy on 9/21 for DCIS. My breast also got very firm, huge & developed a Seroma. My breast sounded like a half full milk jug, with the built up fluid making sloshing noises every time I moved. The Seroma will eventually reabsorb in your tissues BUT if it’s becoming painful with the swelling that accompanies the fluid your surgeon can drain it. They don’t like to do this since it can lead to an infection. I had my surgeon drain it on my post op visit. It did return but it wasn’t as much fluid & it seems to be going away now. From my research this happens 30% of the time after a lumpectomy so it’s “normal”. I found it helpful to keep icing every 30 min on/off for the first 3 days. The ice felt wonderful! I also wore a very supportive/compression type bra 24/7 for the 1st month. I hope this helps & you start feeling better over the next few days. Try not to take any type of pain reliever that would cause blood thinning which will add to the problem.

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Thank you rene1636 ! I’ve been trying to make a joke about it but I’ve been scared. Thank you for sharing your experience with me. I don’t feel so crazy or alone now.

My surgery was Monday afternoon and I’m still bleeding from several incisions. I found some old bras that could get around the giant right breast and lining the inside with thick Bounty napkins - “the quicker picker upper.”

I’m not sloshing or making any noises (yet?) - my breast is just hard.

It’s four days out and I’m still trying to get a Visiting Nurse. I live alone and the doctor’s office forgot to send in my request 🙄.

Thank you, again. Your feedback was/is much appreciated. 🙏🏻

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@tctredwell1

Thank you rene1636 ! I’ve been trying to make a joke about it but I’ve been scared. Thank you for sharing your experience with me. I don’t feel so crazy or alone now.

My surgery was Monday afternoon and I’m still bleeding from several incisions. I found some old bras that could get around the giant right breast and lining the inside with thick Bounty napkins - “the quicker picker upper.”

I’m not sloshing or making any noises (yet?) - my breast is just hard.

It’s four days out and I’m still trying to get a Visiting Nurse. I live alone and the doctor’s office forgot to send in my request 🙄.

Thank you, again. Your feedback was/is much appreciated. 🙏🏻

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The swelling maybe opening or pulling on the incision causing the bleeding. After 4 days & still bleeding, I would think the doctor may want to see you. You may want to insist on an appointment as soon as possible if the doctor is reluctant. If nothing else it may give you peace of mind which in my opinion is priceless. Hopefully the nausea has subsided by now! Best wishes!

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@rene1636

The swelling maybe opening or pulling on the incision causing the bleeding. After 4 days & still bleeding, I would think the doctor may want to see you. You may want to insist on an appointment as soon as possible if the doctor is reluctant. If nothing else it may give you peace of mind which in my opinion is priceless. Hopefully the nausea has subsided by now! Best wishes!

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Nausea is trying to subside but it kicks up when I do anything for more than a few minutes. I’m not getting sick, “just” nauseous, shaky and weak. Hopefully the Visiting Nurse service can spare someone today or tomorrow.

I heard from the nurses (before surgery) that my surgeon is going on vacation soon so I don’t know if I can get an appointment but I’ll try if I don’t see a nurse by tomorrow.

Thanks again.

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@tctredwell1

Thank you rene1636 ! I’ve been trying to make a joke about it but I’ve been scared. Thank you for sharing your experience with me. I don’t feel so crazy or alone now.

My surgery was Monday afternoon and I’m still bleeding from several incisions. I found some old bras that could get around the giant right breast and lining the inside with thick Bounty napkins - “the quicker picker upper.”

I’m not sloshing or making any noises (yet?) - my breast is just hard.

It’s four days out and I’m still trying to get a Visiting Nurse. I live alone and the doctor’s office forgot to send in my request 🙄.

Thank you, again. Your feedback was/is much appreciated. 🙏🏻

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Call your insurer if your doctor isn't addressing home help. Most insurers cover benefits for extra post-surgery home care as it reduces the rehospitalization statistics. Also ask the hospital social/case worker or patient onbudsperson for any and all eligible services that apply. I'm sorry that you're going through this with scant in-person help and hope your doctor(s) become be more helpful but maybe they need to be made aware of the exact circumstances.

I live alone, after moving out of a long relationship, and have had to start building a new ' support team' from scratch in a new state and worry about needing medical help so spent time checking resources 'just on case' I ever need them. I hope that the Mayo Connect Community are helping you feel connected and cared about, as I'm sure you are.

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