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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Detecting recurrence after surgery

Topic: Detecting recurrence after surgery

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Sep 1, 2013 05:01AM - edited Sep 1, 2013 10:14PM by sambo

sambo wrote:

Hi there. Firstly a big thanks to everyone who's participated on these boards, they are so informative and a great patient empowering tool!

I am still in shellshock having had my BMX just three weeks ago, only two weeks after my diagonoses. I am accessing some psychological help (six sessions are free through Medicare) which I think will help me come to terms with everything that's happened. 

Anyway I had crappy margins (From my path report: Resection margins: 0.02mm from posteromedial, 0.08mm from posterior; 0.1mm from the superior margin, 5mm from anterior, 6mm from inferior, >20mm from lateral; benign breast tissue at margins in both breasts.) I am trying to decide whether RT might be appropriate and am meeting an RO to discuss this (my MO said she didn't think so, so the RO is a 2nd opinion). I've read this amazing thread - Lisa's story is very similar to mine.

Because I am in two minds about RT I am interested in how best to keep an eye on myself so any recurrence (which I calculate I have a 15% chance of) can be detected.

I'm going to see my MO every 6 months. Should I also have twice annual MRIs? PET scans? Obviously if I see anything strange I'll go and see my MO immediately. 

I really think figuring this out is going to help me move on mentally. 

Thanks for taking the time to read. 

Sam

PS: I've got relatives overseas so have been blogging about my experience so they can keep up with my story. However as well as being an information tool, it's turned into a very therapeutic outlet for me. www.thelittlec.org

Dx 7/17/2013, DCIS, 6cm+, Stage 0, ER+/PR+ Surgery 8/12/2013 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 1, 2013 06:11AM mawmaw504 wrote:

i had DCIS 5 1/2 years ago and they have not done any MRIs or PET scans.  i now only have labs and mammogram one time a year now.  i did radiation for six weeks and had no problem with it at all, but i have REALLY small breast, so maybe that made it easier for me.  praying for things to go well for you whatever you decide on.  Marie

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Sep 1, 2013 07:29PM ballet12 wrote:

Maybe you can have targeted radiation for the two margins which are less than 1mm.  The others, greater than 2 mm should be acceptable.  How did you determine your recurrence risk being 15 percent?  If your MO gave you those numbers, I'm surprised he/she didn't recommend rads.  Good that you are getting a second opinion from the RO.  Although it's scary to get rads after mx, sometimes its necessary.

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/26/2012 Lumpectomy: Right Radiation Therapy 1/11/2013
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Sep 1, 2013 08:33PM - edited Sep 1, 2013 08:35PM by sambo

mricks I appreciate your encouraging words

ballet12 thanks for your input, good food for thought there. I admit that I have worked out the recurrence risk myself Embarassed It is certainly tricky to come up with a really accurate percentage as the low number of people in the studies I've read make the numbers statistically unreliable. One thing I have worked out is that while not all low margins mean a recurrence, all recurrences mean a low margin. This does bump up my odds from the 1%-2% cited on DCIS recurrence.

The net at large (or Dr. Google as I like to call it!) has given a wealth of information to help me calculate my personal risk, plus with the rads or not decision. Some threads on this board have involved people in a very similar position to me, and so I have accessed lots and lots of studies on recurrence after mx cited in the discussion plus have read plenty of other MO and RO opinions, not to mention panel review results (cases like mine often end up there!).

Opinion seems to be squarely divided.

I am partly inclined towards rads, because I have already sacrificed so much I don't want to 'fall at the last hurdle'. However I am also conscious that if I play the rads card now I won't be able to play it should a recurrence happen, so I'm also considering a watch and wait approach. 

I'm hoping the RO will have a firm and informed opinion to help me make this tricky decision.

Dx 7/17/2013, DCIS, 6cm+, Stage 0, ER+/PR+ Surgery 8/12/2013 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 2, 2013 05:57AM ballet12 wrote:

Sounds like you have been very thoughtful about this.  The only thing I wonder about is this issue of leaving radiation "in reserve" should it be needed later.  I have heard many women say this.  I don't fully understand the reasoning, because you know that you are dealing with "only" DCIS now, and using the radiation to prevent recurrence of either DCIS or IDC. If you wait for reoccurrence to happen, then it could be IDC, which is, as you know, a systemic disease.  You want to avoid going there, if at all possible. 

I felt the need to do the radiation because I didn't do an mx, so my recurrence risk without rads would have been very high (high grade with necrosis, multifocal, large area).  Recently, as I have waffled about taking the Aromatase Inhibitors, my surgeon reminded me that I wouldn't be able to do another lumpectomy plus rads, I'd have to do a mastectomy (of course without rads again).  I'm fully aware of that. 

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/26/2012 Lumpectomy: Right Radiation Therapy 1/11/2013
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Sep 2, 2013 11:36AM Beesie wrote:

Yes, you do have some crappy margins.  Back when I had surgery it was quite unusual to see rads being recommended after a MX for DCIS, but there have been a couple of research studies released since then (small studies, mind you) that suggest that the recurrence risk for those with close margins is significantly higher than the norm (the norm being 1% - 2%) and as a result, over the past 2-3 years I seen a lot of women come through here who've had rads after a MX for DCIS.  So given that you do have a number of very close margins, I am surprised that your MO didn't recommend rads. 

From what I've read, I suspect your 15% estimate of your recurrence risk is probably about right.  What was the grade of your DCIS?  If you have grade 3 DCIS and/or you had comedonecrosis, then the risk might be higher than that.  Just guessing here, of course.   The grade of the DCIS could also impact the possibility that a recurrence might be IDC, not DCIS.  Generally about 50% of DCIS recurrences are not found until they are IDC but if you have high grade DCIS, the risk might be higher than that.  Rads on average is able to reduce the recurrence risk by 50%.

As for how to detect a recurrence, the first question is, have you had or do you plan to have reconstruction?  With a flat chest, or with implant reconstruction (because the implant is placed behind the chest muscle), your chest wall is pressed right up against your skin.  So a recurrence either against the chest wall or against the skin will become noticeable quite quickly - with the relatively hard smooth surface that you have either with no reconstruction or with implant reconstruction, even a very tiny nodule is easily detected.  This is a big advantage of having the MX - there is no breast tissue in which a recurrence can hide or which can make a recurrence more difficult to find. 

And that's why usually no screening is recommended for those who have a BMX for DCIS. The screening is not likely to find a cancer much earlier than a breast self exam will.  For those who have implant reconstruction, sometimes MRIs are recommended every 3 years or so, but that's to check the integrity of the implant more than to check for recurrence (although of course both ends are achieved).  In my case, I do get alternating MRIs and mammos every 6 months but that's because I had a single MX, not a BMX.  The screenings are for my remaining breast; my reconstructed breast just goes along for the ride, getting checked for cancer and the integrity of the implant.  If I were ever to have another MX, I know that I would no longer be getting these screenings.

It will be interesting to see what your RO says.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 2, 2013 09:56PM - edited Sep 2, 2013 10:04PM by sambo

I do appreciate your input, ladies, it is incredibly valuable. I have to say my instinct is to proceed with RT, so I hope I can access it without too much of a fight! Will report back after my consultation with the RO.



One question. Does anyone know the longest gap you can leave after surgery before starting RT?
Dx 7/17/2013, DCIS, 6cm+, Stage 0, ER+/PR+ Surgery 8/12/2013 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Sep 3, 2013 07:49AM ballet12 wrote:

Hi Sambo, I've seen so many different comments on the surgery to radiation "gap".  Many have stated something like 6 weeks.  I am treated at Memorial Sloan Kettering in New York City, which is a top cancer center, and I went 2 1/2 months between the re-excision surgeries and the radiation.  I had my last surgery in late October, did the consultation with the RO in December and the radiation began in mid January.  They didn't seem to have any concerns with that.  Again, my diagnosis was "pure" DCIS.  Maybe they treat other diagnoses differently.  I had wide margins by the time I did the radiation.  You do not, so that may help get you in sooner.  I was assigned an amazing RO, so it was worth the wait.

I can't imagine that you would need to fight for the rads.  You have multiple close margins.

Surgery 7/27/2012 Lumpectomy: Right Dx 8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR- Surgery 10/5/2012 Lumpectomy: Right Surgery 10/26/2012 Lumpectomy: Right Radiation Therapy 1/11/2013

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