Savvy Scout in Wrong Place / moved?

Going through breast cancer treatment Surgery
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I was diagnosed with an intermediate Grade DCIS & went for wide local excision using a Savvy Scout guide.

I had my results last Friday.

Bombshell that the target area of DCIS was completely clear of DCIS but the margins were full of it ie they have taken out a significant chunk of healthy tissue from a very, small breast. They are proposing taking out more tissue.

The radiologist who inserted the scout was not confidence inspiring which leaves me wondering if the savvy scout was put in the wrong area or if they can move which would render them rather uselessā€¦

Has anyone experienced anything similar?

They tell us that they canā€™t do repeat imaging either Mammogram or MRI for many months to check & remark the DCIS & will just excise the margins which seems like guesswork. Also that it has to be reexcised fairly quickly.

Has anyone had repeat imaging after a lumpectomy / wide local excision & if so when?

We are still reeling & as you might imagine not sure what to do, seek another opinion

Thank youā€¦

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Not gone through what you have, however, I had a very inept Sonographer who put me through hell. Luckily their mistake was rectified prior to surgery but I know it can happen. I had a magseed put in the wrong place, which was realised as had a mammogram to check placement just after, which meant having another magseed put in the right place, then another mammogram to check that, followed by biopsies of the other place, which all came back normal (that was a scary few days wait). Not sure if savvy scout is different but I had mammograms twice on same day a couple times so I donā€™t get why youā€™d have to wait unless its due to bring post op and needing to wait for inflammation to settle before a meaningful picture can be seen.
Sorry you have gone through that, its shit when people you hope can do their job right let you down.

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Hey thanks for your reply, I canā€™t go into detail but very strong suspicion the radiologist / sonographer put it in the wrong place. I had a mammogram before but not after.

I understand why they canā€™t do a mammogram now at 3 weeks post op & with a haematoma but donā€™t understand why they canā€™t MRI at some stage before surgery. I understand that the imaging may not be as clear but having spent a lot of sleepless hours trawling google MRIā€™s before re-excision seem pretty common if not actually standard.

I knew that re excision of margins was a possibility but taking out healthy tissue & inky getting the DCIS by ā€˜chanceā€™ in the margins is something else altogether. ā€¦ Itā€™s been a pretty awful weekend.

I donā€™t want not to trust the surgeon who has a very good reputation or the unit but itā€™s hard no to doubt given whatā€™s happened, I was spat out on a Friday with no clear idea what was going to happen next.

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My first procedure was done under local anaesthetic and continual radiological guidance ( vacuum assisted excision ) as part of a medical trial called the small trial. It was quite obvious to me after a while that it wasnā€™t going well - as a Nurse I could tell by the manner of the staff . When I asked the Radiologist said that they thought they had lost the lump - it had pinged out of their grasp and that the marker clip got lost as I have what she politely described as loose breasts. An Isogel tag was inserted at the site where the Radiologist suspected the tumour had gone as a guide . They removed 40 grams of tissue instead of the expected 8 to 10 grams - 40 slices in total.Iā€™m a big woman and tall but have small breasts for my size - B/C cup.

My results showed that 8 samples were positive for cancer and as my tumour was very small it was suggested that they might have got it all though I doubted it. I was told I would need to wait 4 weeks for the haematoma to clear before they would be able to properly visualise everything on mammogram . After having the mammogram the results were not clear cut - I was anxiously waiting feeling like the world had gone mad as I knew they hadnā€™t got it . My Radiologist was with me but the second Radiologist thought it was gone and my films were sent to the University that were running the trial - their Radiologist confirmed incomplete excision. I was then brought in for lumpectomy and SNB under general anaesthetic 2 and 1/2 weeks after that - this was completely successful with another 6 mm tumour removed with good margins and clear SNB but there was still evidence of haematoma from the initial procedure when I had my radio frequency tag fitted a few days before - the same Radiologist did that so she knew exactly where my tumour was without needing to fully visualise it . Iā€™m happy with the shape of my breast and my scars are barely noticeable .

I donā€™t know if an MRI would pick up DCIS if itā€™s hiding in haematoma at present or if it would just pick up the haematoma . I doubt that they would be working blind as such as they have obviously seen where your DCIS is - itā€™s unusual I think for them not to have got any of it first time around but itā€™s quite common to find DCIS that wasnā€™t initially diagnosed or more extensive DCIS than previously thought when they actually get in to operate . Iā€™m sorry that youā€™ve lost so much healthy tissue - itā€™s easy to lose trust in your team and it can be hard to get it back. When everything is finally sorted if you are unhappy with the shape of your breast then there might be an option to have a cosmetic procedure .
I had some lingering questions about my first procedure and much later my BCN arranged a meeting with the initial Radiologist for me which did give me closure. For a while I had felt angry and bitter as I felt that they shouldnā€™t have tried to get me into the trial in the first place - I was the first person on it in my hospital the pathway hadnā€™t been worked out properly communication was awful ( though I now have a good relationship with my Research Nurse who was working his socks off to get everything up and running ) but after the first failed procedure I felt a bit like a discarded guinea pig.

I would suggest getting in touch with your BCN - write all your questions down and ask them . Another option would be to write to your Surgeon via his secretary - the hospital website or switchboard should be able to tell you who to call. If you would prefer not to do that in the first instance then maybe a call to the Nurses on the helpline would be of benefit - they might be able to answer some of your questions 0808 800 6000 9am to 4pm Monday to Friday and 9am to 1pm on Saturdays. Take care xx

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Thank you so much for your detailed reply.

The surgeon was clearly very uncomfortable / unhappy at my follow up. More so when I related what had happened during the Scout insertion. The jist of that being that the radiologist seemed confused & unclear as to location. Itā€™s hard to get past that experience & the doubt that it was placed incorrectly.

I am a AA/ A cup so thereā€™s not much volume to ā€˜playā€ with & I have lost a significant area of healthy tissue already. I have nerve pain (which is a risk) and have been told Iā€™m not a good candidate for reconstruction procedures like LICAP (unsurprisingly).

I am seeing the surgeon again & have been asked to make a written note of what happened with the radiologist. There are to be meetings to investigate but that doesnā€™t help mitigate the fear, anxiety & thought processes currently keeping me awake at nightā€¦ They want to go back in but Iā€™m struggling with trusting that team / hospital. I did feel ā€˜safeā€™ but the seeds f doubt are well & truly sownā€¦

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This is almost my exact situation. They removed 5.75x4.5x2 cm of tissue for a 5mm DCIS and pathology showed the Savi marker but no cancer and no biopsy marker. At my checkup, the Dr said the marker was placed incorrectly but now everyone is saying the device migrated. He wants to go back in because ā€œnow he knows where it isā€ but says it may return with no cancer again (in which case, a mastectomy might be next). I have so many questions and things that are not adding up, I have requested a 2nd opinion from a different hospital. Hard to believe the device migrated in less than 24 hours and hard to risk another incision and more tissue removal from a small breast. Alternative is to wait 3-6 months before a scan will show anything.

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Iā€™m sorry for the situation you guys have been faced with. Iā€™m sure my wle on Thursday, I never even knew the Magseed could migrate. Another factor to consider.

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Hi there, Iā€™m so sorry youā€™re going through this tooā€¦

I couldnā€™t get past what happened during the Savi Scout placementā€¦ We subsequently had an hours meeting with the surgeon & a senior radiologist (a long 2 weeks later because of Bank Holidays / half term).

We were grateful for their time & they went through the imaging etc but a few questions were ā€˜dodgedā€™ including how many times the surgeon had seen this & how many reexcision of margins I had (latter being none & surgeon was aware that i had very strong feelings about losing my breast).

Unfortunately that meant that I found myself doubting everything else we were told during that hour. I didnā€™t want to not trust the surgeon who I had (& still do have a great deal of respect for) but throw in the NHSā€™s institutional tendency not to admit mistakes & I found myself unable to proceed without getting it sense checked elsewhere. Speed was of the essence not because of cancer risk but clock ticking on surgical practicalities of going back in (ideally from week 4) so with some help (which I was lucky to have) I sought a private second opinion from the Royal Marsden in London.

Saw a very senior chap (39yrs of experience versus 11yrs) who had reviewed everything in advance & went through all the imaging including the initial biopsy images to the actual tissue removed. Everything was textbook. Marker clip & scout both in the right place.

He said this was indeed a rare situation & unfortunate but he had seen it happen on occasion (ac39yrs career) . He also said it was possible that they got a lot of the DCIS in the initial biopsy & that the proposed op including taking out an additional margin was what he would do.

ā€¦ I would get that second opinion & if possible from a big centre. Marsden is a centre of excellence for cancer in general & is in the South East where Iā€™m based. It gave me peace of mind & the ability to proceed with a second op.

Our conclusion was that my surgeon got flustered & wrongly (heā€™s young) didnā€™t want to admit that heā€™d not seen this scenario before & that together with awful radiologist, NHS not being known for readily admitting errors sent me into a spiral of doubts. Iā€™d also had a rubbish time with an awful anaesthetic, lousy overnight stay/ terrible care which were in the mix too. .

I had second op just over a month ago (chalk n cheese - excellent care from reception, anaesthetics to the nurse that discharged me) . They didnā€™t find any more DCIS. They thought there was 21-23mm from mammogram / biopsy but in total only found 15mm so that was downgraded from a large to small DCIS so no radiotherapy.

I have lost the entire upper outer quadrant of my very small boob (AA / A cup) so things look a bit sad but honestly not terrible & I have the option of lipomodelling in ideally 12months time.

Itā€™s been a long haul & the second opinion was vital. They have dropped the ball re HRT / Menopause Clinic but thatā€™s another thing. My mind is at rest re surgery etc

Savi Scouts have a very high success rate circa 96-97% complications seem to arise if marker is placed very deep I think more than 6cm (in my case that would be beyond my ribs) very dense breast tissue & problems with the equipment in theatre. The incidence rate of the scout moving is incredibly rare. Not unknown butā€¦

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Thanks so much for responding and Iā€™m so glad you were able to have a successful surgery and move on. It is so comforting just to know someone else had the same situation because itā€™s clearly rare. Second opinion is hopefully coming from Stanford in California as I definitely agree on the bigger center once the doubts are there. Iā€™m hoping that it will lend the credibility I need that has been lost. I too have respect for my surgeon but just too many doubts. My Savi placement was deep so I may fall under that rare problem area. More to come but I hope for more clarity on next steps soon. Thank you so much for sharing your experienceā€¦

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No problem. I was in utter turmoil after the results from my 1st surgery & whilst I didnā€™t doubt need for a second operation I had to have answers from a independent source outside of the NHS trust I was under. Obviously I got the best answer in as much as no mistakes had been made just awkward pathology & DCIS is tricky because itā€™s diffuse by nature not ā€˜lumpā€™ with more defined edgesā€¦

Please let us know how that second opinion goes? Assume you are in the States? Take care you will get through this.

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Received my second opinion. No surgery recommended. They will take my case to their tumor board in a few weeks to review, but mammogram and ultrasound show no evidence and no biopsy marker. They want to discuss radiation because of the presence of ADH cells in pathology (that has not been explained prior to me). Hormone therapy is an option as well but not a good one in my opinion because I was already struggling with symptoms even while on HRT so to remove hormones entirely seems cruel.
So comforting to have that better communication. Everything was explained each step of the way. The surgeon did say in my case, much more tissue was taken out than she would have done (6cm v 1cm) so that was hard to hear.
I will wait until the board discussion comes back, have another MRI, but it appears the answer is they may have gotten it in biopsy and I need to be scanned regularly to monitor.
Not ideal, but confirming that need for a second opinion. Experience was chalk and cheese, which is now a new favorite saying!

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A lot in the mix thereā€¦ How do you feel about it? Monitering seems like a conservative but good option from hereā€¦

I hear you re amount removedā€¦ Lost a similar amount of tissue that equates to the entire upper outer quadrant of my AA/A cup boobā€¦ Iā€™m mostly okay with it in as much as DCIS is diffuse & tricky to pin down so they err on the side of cautionā€¦ Iā€™d rather that that the alternative.

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Iā€™m feeling good about it. With the ultrasound and mammogram showing nothing, and 6cm of tissue taken for a 6mm DCIS, they feel like it is not there. It will be interesting to hear what their tumor board has to say when they meet at the end of the month. I knew if my surgeon went back in, he would take a lot more tissue because he was so upset about not getting it the first time.