After Treatment after Recurrance of DCIS
I was diagnosed with DCIS at 37 deep in my right breast. It was high grade, estrogen receptor positive, progesterone receptor negative and spread out about 1.5 cm, no lymph node involvement. My mother had BC at age 49. No other family history. I was tested and do not have BRCA1 or BRCA2. I chose a skin saving bi-lateral mastectomy. I felt this was the least invasive choice compared to radiation and tamoxifen at my age). Also, I had 2 small children and wanted to give myself the best chance for no recurrence. I am still happy with that choice. For 8 years, I did not worry about cancer coming back.
Unfortunately, 8 years later, I have had local recurrence "near" the same area (same type, grade, receptors, 1cm+, nothing invasive). Actually it is right by the original biopsy incision. During the first biopsy, I had a lot of bleeding and very large hematoma. There is some debate on whether the recurrence was a cell left behind or if it was planted due to the biopsy. Regardless, it came back... Now, I have had a lumpectomy (after a mastectomy!, go figure.) Also, we did not get clear margins so I had to have a re-excision. They could not get clear margins on posterior, but did not want to cut into the fascia or muscle. The other margins on the re-excision were clear but it did show 3 focal areas of DCIS. My medical oncologist does not recommend radiation, but my surgeon does. MO thinks that since I have had the mastectomy already and that radiation would not help my other breast, that the radiation would cause more harm than good. I tend to favor my MO's opinion and trust him more. He is on the fence on whether I should do tamoxifen. I meet with him again this week to discuss. I do have uterine issues already (thickened uterus and uterine lining and heavy bleeding), so I am concerned about taking Tamoxifen. Does anyone have any advice on how to determine if the treatment is more dangerous than the chance of recurrence?
My second question is that I have read about DCIS metastasizing without ever having become an invasive cancer in the breast. After my first surgery, my only after care was my annual exam with my gyn and self breast exams. Now that it has recurred once, and given my age at both diagnoses, I am more worried about the likelihood that it will recur again (and where). Are there any other tests done for monitoring recurrence, or do I just need to wait to see if symptoms appear (scary)? With my lumpectomy and re-excision, I was not able to have any nodes tested.
Last, should I have oncotype testing done (for DCIS)? My MO has not done it yet, because he said he uses it primarily for determining whether radiation is needed for lumpectomies of DCIS. Since I have had a mastectomy the results may indicate I do when I really do not. However, I would still be interested to know how aggressive my cancer is. Does this test provide more information that would help me understand my diagnoses better? Should I ask for my slides to be reviewed by another pathologist?
Any other advise on how I can decide on after treatment and how to monitor myself for any recurrences?
Thank you.
Comments
-
I will just speak to the question of radiation. I really encourage you to see a radiation oncologist to discuss it. Your MO and your surgeon can have opinions, but it's the RO who is best equipped to help you make this decision, understand the research, etc.
I'm sorry you are dealing with recurrence.
-
Thank you. I have seen a RO who advised radiation. I should mention there is some local drama over whether a 2nd radiation center (recently built and part of my surgeons medical center) was needed in our community and whether radiation is over-prescribed... My MO (not part of that group) is adamant that I do not need radiation. I should probably also mention that I do have a healthy distrust of doctors/medicine. In my experience with other medical issues, they often just follow a list of the most likely issue (or most accepted treatment) vs. digging in to find the correct diagnosis or correct treatment. I think that is why I am torn about who to trust. I did also have a 2nd opinion at a university breast center and the surgeon there also was not certain that I needed radiation. If the path results were DCIS only, she was leaning towards no radiation... I did not go that route only because the surgery would have to have been scheduled 6-8 weeks out and I was not comfortable waiting that long (my lump grew from not detectable (to be felt) to 1cm in about a month...)
I appreciate your feedback. Good luck in your treatment. Are you tolerating the Tamoxifen ok?
-
Kechla--I don't have a whole lot of information to offer and can't tell you how to make this decision. Through my own journey, I think I've been fortunate in that decisions were easy for me once I had the information and I'm not one to second-guess. It must be difficult to have disagreement within your medical team.
One part of my story might resonate with you. I went into the initial consultation with my RO (before the first surgery) leaning away from doing radiation because I too am not going to necessarily do something just because it's recommended and am not one to over-treat. She explained that yes I was Stage 0, non-invasive, but at Grade 3, she called my cancer "nasty." We talked about my husband's concern that if you can only do it once on a breast, maybe we should save that for a possible recurrence. She said, "The goal is to not get there. The goal is not to have a recurrence." That, plus the fact that I am ER-/PR-, so no Tamoxifen-type drug would be available to me, absolutely decided it for me. After I got the initial diagnosis, I was thinking I was more wary of taking a drug for 5+ years than any surgeries/treatments I'd have in the coming weeks. However, I think if I were ER+ and it was recommended, I'd go ahead and do it. I am on board with the concept of let's throw everything we have at it and minimize the risk it will recur.
FWIW, my RO said absolutely do the oncotype testing if it would give me some comfort/security in my decision but she said, "I can tell you it's going to come back high." I didn't bother.
I'm a little surprised at the annual follow-up for you. For me, and I think most, I'll be getting looked at by BS and RO every six months for at least three years, and then either semi-annually or annually for another two. Kind of a pain but I like that idea.
And I agree with BlueHeron that your RO is the specialist in terms of radiation. My BS never tried to suggest radiation or not--really not his area.
-
Ingerp, Thank you for your input. I am leaning towards the Tamoxifen. I'll just need to get off right away if it leads to bad symptoms (or go with hysterectomy - I was almost to that point last year anyway...)
I am also very concerned about being grade 3. I think the difference is that I have had a mastectomy too so not much precedent in that situation... If I had only a lumpectomy, then radiation would be a given.
Yes, the once a year with my gyn seemed odd to me too. But both my BS and MO recommended it since I did not have any radiation or medical treatment with the mastectomy... If I do radiation this time, then I would be on a 6 mo recheck for several years and then 1x/year beyond that. Probably similar for MO with tamoxifen.
-
No real issues with tamoxifen so far. Almost three months, had significant hot flashes for a while but they are calming down. A little vaginal discharge. But that's about it. Oh, and it got rid of my migraines! Bonus
-
Eight years was the unlucky number for me too. I got a bilateral mastectomy when I was dx with DCIS. I had no radiation or hormones. The MO told me that I didn't need any follow up. (They have since admitted that was incorrect.) I should have been seen annually for the first five years. Then it would be up to me to pay attention to symptoms.
I have been taking tamoxifen for a month and a half and it's been pretty easy on me.
-
Noni, thank you for sharing with me. I can't even comprehend how you must be feeling to have jumped from DCIS to your current diagnosis (especially considering your initial treatment was so similar to my own). Do you mind if I ask you how you found your recurrence?
I will be thinking of you and wish you the best of luck in your treatment!
I love that you have a brainy girl!
"Who run the world? Girls!" -
Last summer I was feeling real run down. Digestive problems, painful hip and joints, coughing that wouldn't stop, and spitting up mucus. I saw my family doctor for several months thinking it was menopause, allergies, bronchitis, or just getting old. We tried all sorts of treatment and when each one failed she sent me for an xray to figure out the cough. That's when we found lungs full of crap.
My advice is to pay attention to your body and always err on the side of cancer. Insurance companies will not approve testing unless there are symptoms. Keep an eye out for symptoms, no matter how small. I thought 8 years after DCIS I was in the clear.
-
Thank you for sharing.
-
So, after my most recent appt, I have a better understanding of my margins. While my posterior margin was close (.6 mm), it was clear. So I have all clear margins now. Some are close, but the area they were pulling from was very shallow since it was between the skin and implant.
I am planning to do tamoxifen. MO indicates tamoxifen and radiation carry similar reduction of risks. TBD on how well my cranky uterus handles hormones.
I still need to decide on radiation. Recurrence is a risk (and a scary one), but radiation also has risks. With my implant, (which I have thanked for helping me to find this lump while still small) I have risk of more surgeries due to contracture. There are cancer risks due to radiation. The area will harden and make lumps less easy to feel. The big question is which risk is worse...
I change my mind on this hourly... Then I remind myself that I am lucky to have a choice. My situation could be much worse leaving me very few options and that reminds me not to get too carried away. I don't think of it though as "only DCIS" as I have seen mentioned. I take it seriously. Grade, necrosis, ER+ and pre-menopausal, family history, and recurrence, remind me that it means business... So then I am left wondering what the right decision is again... Stupid cancer.😠
-
Kechla -- wow, what a tough spot you are in. This would go under the category of "Life is not fair." My suggestion on the decision is to keep researching until you have enough data to make a decision. Maybe you don't have enough data yet? And sometimes, there ISN'T enough data (not enough clinical studies, etc) and you have to take what you do know, and then make a leap of faith.
You mentioned the cancer may have grown in your lumpectomy scar; question for you: when you had your BMX, did the bs cut upwards (or downwards) and grab that lumpectomy scar? Or she/he left it there, so you had two scars -- one from the lumpectomy and one from the mastectomy?
Also, to Kechla and to Noni, did you keep you nipples?
Again, so sorry you guys are dealing with this. It is a sobering thought to say the least.
-
Ispy, I had my nipples removed. I wanted as much breast tissue gone as possible.
-
Wow. I am just so sorry that you are going through this, after going through a BMX and reconstruction. Not fair notfairnotfairnotfairnotfair (that is me on the ground kicking my heels and fists on the ground; a full-on tantrum).
So now that I'm rational again: I think Kechla said that her recurrence happened in the LX scar. Did you still have an LX scar by chance...? My bs made a crazy jagged scar that goes up my foob towards the opposite ear in order to take the LX scar as part of the BMX. If not, did your breast surgeon give you any idea how this sort of thing happens? My bs said less than 1% chance (leave it to you to be in the top 99% of the population, right? I bet you're really smart too, and have other attributes that put you at the top too -- it would just figure: top 99% of the population across the boards).
I'm obviously trying to gauge how worried I need to be about this. My DCIS was so incredibly small, and Grade 1, just barely cancer (and then LCIS in the left boob we didn't even know was there -- never showed up on any imaging, not even on our radar; so I do not regret my BMX for a second, since I could have gotten ILC before we even knew it was there). I mean, no matter your answers I will clearly not be missing any follow up appointments with my bs (every 6 months right now) and I will be doing self exam. So you have done a good deed here; as part of your pain you are helping others, so thank you.
-
Ispy I am a worrier by nature, unfortunately. That's why I took extreme measures to hopefully cut down on things to worry about. I am not allowing myself to go back and ask how and what if. There are no answers that will give me peace.
Every single case is different and what happened to me is not going to happen to most. Please don't live your life stuck in cancer anxiety land. Just pay attention to your body and listen when it tells you something is wrong. (Note: your body, not your mind!)
-
Ispy, going back to my original dx and surgery, I had a bi-lateral skin sparing (but not nipple sparing) mastectomy. With my age, high grade, ER+, comedo necrosis, family history, and young kids at home, I felt like a mastectomy was the better course of action over a lumpectomy with radiation (and possibly tamoxifen) for me. I do not regret this decision. It had a lesser chance of recurrence and I still think it was the right decision. The only thing I think was lacking was the lack of monitoring. Manual exams only and regular Gyn appt once a year. I wish there were better ways to monitor for recurrence.
The mastectomy did not take the biopsy scar (not lumpectomy scar). My scar is straight from side to side. There is debate on whether there was just a cell left behind outside the margin or if it was seeded near the skin due to the biopsy. My biopsy had some complications. LOTS of bleeding and a huge hematoma. I don't know why they didn't take that scar with the mastectomy and at the time, I didn't think to ask. (In my opinion now, the cancer was seeded from the biopsy.) When I had the biopsy, I was concerned and actually asked "since it is DCIS, aren't we letting it out of the ducts by doing the biopsy?" My concern was that I had a vacation in 2 weeks and didn't know whether to cancel and schedule the surgery right after the biopsy. Surgeon said no, it doesn't work that way. So I went ahead with my vacation (I still had the mastectomies within 5 weeks of diagnosis.) After the pathology, at my follow up appt. the surgeon indicated that the pathology showed cells of dcis through the path of the biopsy.
Fast forward to this recurrence. The biopsy scar is gone along with more skin and tissue around that area. In total they took about 3-4" of tissue side to side.
I get your point on the data. I keep looking for that study that relates to my situation that tells me exactly what I should do. The problem with recurrence of DCIS after mastectomy is that it is pretty rare and there are not many studies that go down this road. Also, aside from the size of my mass, I have a lot of risk factors (ER+ while pre-menopausal, high grade, recurrence already, comedo necrosis,... and most studies tend to lump all DCIS together, so it is hard to gauge what the true % chance of recurrence is. I have found a few studies, but they give conflicting data... For me, I just need to remember that I didn't have just a lumpectomy. I did have the mastectomies too. So I can not look at standard lumpectomy treatment as automatically what I should do. On the other hand, I did have a recurrence after mastectomy, so I am in the 1% who can get a recurrence. 2 very conflicting though processes. I'll get to a decision and once I do, I will not look back. If you make the best decision you can with the facts you have at the time, there is no need to second guess.
Ispy, you should be diligent about monitoring (once a month self exams plus what your doctor is recommending), but you should not worry about it daily. On the bright side, I caught my recurrence very early due to my implants. It was noticeable when it was still very small. Implants do help in that regard.
-
Kechla, that is really a tough decision. The statistics I've seen on the effectiveness of radiation (for first DCIS diagnosis in conjunction with lumpectomy) are encouraging. But the other issues you mentioned are concerning too. Breast cancer always seems to leave us with an endless supply of Crappy Option A vs. Crappy Option B. The clear margins are good news. I had a <1mm margin from my MX that I was concerned about, but my BS assured me that MX margins are very different from LX margins.
Noni, thank you for reminding us, while the world tells us there is nothing to worry about, that we have to remain vigilant after our diagnosis of "only" DCIS.
-
thank you guys for sharing your stories. I hope someone comes on here who has been through this and has more data. Otherwise, like LAstar says, it is crappy decision A vs crappy decision B. I do know that my bs gave me a hideous mastectomy scar in order to scoop out the lumpectomy/biopsy scar; she said it was because there was a small chance there would be cancer in the scar -- I guess this is a real thing and I will no longer curse the ugly scar on my right foob (my cherry blossom tattoos I'm getting should help).
Kechla, have you been to an NCI cancer center? If not, I would get thee to there with all thine films, path reports, surgery reports, etc etc and get a consultation there. It sounds like with an MO and bs you are somewhere comprehensive. If it is already an NCI center, go to a different one for a second and third opinion. I am like you: I did NOT want radiation and tamoxifen, and my journey has been spent avoiding that. I don't know what I would do if I were in your position..... I feel like sometimes doctors spout "LX, radiation, tamoxifen" like a mantra they say all day long, without even thinking about it or whether it is right for the patient sitting in front of them. So I guess if I were in your position I would get a second and third opinion from two different NCI cancer centers, people who are not going to get sued if I get a recurrence (so they aren't afraid to say what they REALLY think) and are simply offering an opinion based on review of my information. I would then be basically shaking the tree to get the real information on what they think deep down, not just the "most people" treatment plans that get handed out. If, after all of that, the majority felt I should have radiation and/or tamoxifen, I would do it.
Also, I had a hysterectomy and a year later an oopherectomy (removal of ovaries), not for cancer just for cysts (my body likes to grow things) and it was rough but doable. Not as bad as BMX I think, but it was a while (and oh, so many surgeries) ago. That would certainly cut down on the estrogen in your body, right? And it would stop all that bleeding; one thing's for sure: I do NOT miss my period.
I think you can even get a phone consultation from Johns Hopkins; start on this page: http://www.hopkinsbreastcenter.org/services/ask_ex...
Good luck... this is really tough.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team