Misdiagnosed as Fibroadenoma
My wife noticed a family large lump (4cm) on her left outer breast on 8th sept. We immediately consulted a general surgeon who said he was absolutely certain that it was a fibroadenoma. He sent us to get an ultrasound, and the radiologist saw two lesions 3cm and 1cm next to each other, and said they're definitely fibroadenomas. No lymph nodes were noted.
So the surgeon confidently told us that we can deal with it anytime. We asked if we needed to go to a higher centre but he said it wasn't necessary, and we left convinced.
20 days later an excision was scheduled. During the procedure the surgeon noted something wrong in the consistency, and decided to do a wider lumpectomy. He came out and told us it could possibly be a phylloids, but he was confident that he got everything. Needless to say we were quite upset and regretted not taking a second opinion in a higher centre.
5 days later i received the HPE report. Grade 3 IDC with necrosis and LVI, unoriented with closest margin <1mm. Receptors triple negative. Ki-67 65-70%.
Needless to say we were devastated.
We immediately left the state to meet a top breast oncosurgeon. He was very reassuring and spoke about how the case is atypical because neoadjuvant chemotherapy would have been preferred first, but it should not affect the outcome. Regardless he said his plan would be chemo first and then a reexcision to make sure nothing's left of the primary tumour, and LN dissection.
He sent us staging. PET and Mammo picked up a large matted axillary LN 3+cm in size, and the PET also showed a FDG avid subcm mesenteric LN, deemed to be infective/reactive.
I don't think the surgeon was particularly please seening the LN light up.
We met with the oncologist and on 12th October the port was placed and DD AC was started. After the 2nd dose the LN shrunk clinically. I kept asking about pembrolizumab as it's currently the standard of care in the US and UK, but it's still not accepted here.
After 4 ACs the LN had shrunk to 1.6*0.9. I guess we were hoping for more of a response.
MO agreed to add pembro to weekly pacli and carbo. We're 8 cycles through pacli carbo, and my wife's been experiencing some back pain. Im scared it might be sometimes serious like mets, though MO says it's unlikely at this stage. We'll still be having an MRI if it persists.
Im just scared we screwed up right at the start by having the lumpectomy done. No idea what damage that might have done, and we'll never known whether chemo would give a PCR.
There's so my anger at the initial general surgeon for not following standard protocol and recommending a core biopsy. I wish I had read up more at that point and not been convinced so easily.
Did anyone else have a similar experience?
Comments
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Hi breastcancer partner I did not have a similar experience but I wanted to lend support. I'm sorry it's been a rough road lately. Please don't be too hard on yourself this is not your fault at all! You were presented with information and made the best decision based on that information. There were no red flags that that you ignored. You placed your trust in medicine and sometimes it doesn't turn out as we would like it to. The positive is that the surgeon did realize that something was wrong and went wider. It also is positive that the cancer is responding to treatment.
It sounds like you are a great advocate and yes knowledge is power! Continue to ask questions and research, this site is filled with tremendous information and wonderful people. Everyone is here to support you and your wife. Best wishes.
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@cookie54 ,Thank you so much for your reply and encouragement.
I try not to get hung up in the past, but sometimes it gets really difficult.
My wife is taking everything in her stride, and focusing purely on getting through the treatment.
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breastcancerpartner, I’m really sorry that happened to your wife. I wanted to let you know you are not alone. I had a missed diagnosis of Stage IV breast cancer for six years. I am extremely grateful mine is slow growing, but it ended up spreading to my stomach because of it. I’m still here and very thankful, but I missed an opportunity of it staying in my bones and maybe having more years left than I will now. I have gone through the grieving process and accepted what I cannot change, but it has been four years since it was found in my stomach, so I‘ve had that time to grieve. Hugs to you and your wife.
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Hi breastcancerpartner,
just wanted to let you know I also experience bad back pain since chemo and of course I thought something bad could have happen especially since I had an 8mm nodule on one of my lungs(I think it was COVID related) Anyways...Before my last chemo session I had a drop in NA(salt), due to Pembrolizumab, that landed me in hospital where I had a CT and a RMN and found out the 8mm lung nodule completely disappeared and I had no bone mets. (I had 6 Keytruda sessions along with 12 paclitaxel&carbo and 3 Epirubicine&cyclofosfamide)
Keytruda/Pembro proved in a recent study(January 2023) to be not as efficient as they first hoped...
In hospital I also found out the bone mets on TNBC are extremely rare and generally the bone pain is excruciating, not like a back pain at all.
Few days ago my surgeon, who still saw on ECO a 12mm/6mm mass(down from 30mm/20mm) told me that he doesn`t know what he is seeing and only the pathology report after surgery can say if there are dead cancer cells or a partial response to chemo.
I am very sorry for what you`ve been through....
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hi bcp,
I am sorry to see you on these boards. I don't pretend to understand what it is like for you as a spouse.
I read about your regret about not getting a second opinion and opting to do the lumpectomy. You guys trusted advice from a knowledgeable source, and you had no reason to second-guess medical advice then. Try to push past the regret of not seeking a second opinion back then. It is more important to spend time together without lingering guilt. You question the lumpectomy decision too. I would consider the lumpectomy a good decision. Had it not been for you guys moving forward with the lumpectomy, you may still not know today that the lumps were breast cancer. As devastating as the unexpected diagnosis was, you guys moved to a treatment plan. I want to think that is a positive rather than waiting until a much later date to do another mammogram and ultrasound that might lead to a biopsy to diagnose cancer.
I wish you both the best on the road ahead. It is a hard road to travel, and I am glad to read that your wife has an excellent travel companion on her cancer road.
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Thank you so much wondering44, nume and kbl.
I wish for a world where no one has to face this terrible disease. My wife and i are 30 years old, and we've been married 2 years.
- But she's been my rock, whole and soul for the better part of my life. We had just finished renovating our home and were planning our first vacation (we had a covid wedding) when this blindsided us. I pray we all get through this, and live a happy life.
Nume, would you be able to send me a link to the recent update on Keytruda? All i can find is updated from 2022.
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Let`s see... One article is on www.fiercepharma.com february 3 2023 ``Pressure`s on GSK. Merck`s Keytruda drops...``
Second one. also Fierce Pharma january 11 2023 ``JPM23: GSK`s Luke Miels on RSV and mRNA...``
breastcancerpartner, did your wife have the genetic results(BRCA, PALB, others)? and was she tested for PDL-1?
(I tested >15% PDL-1 and I am negative for any genetic mutation)
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I also read recently about chemo being efficient for lymph node PCR(100%) in a proportion of 40-70% of triple negative patients.I will look up if I can find the article to send you the link if you are interested. The article was published in 2020 before Keytruda`s approval.
And of course the vaccine that would prevent recurrence of TNBC but only for BRCA patients.
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She was negative for the entire genetic panel. But we were not recommended to do PDL-1 or CPS testing, since Keynote 522 for Keytruda suggests that the benefit is regardless of status. Though I was tempted to get it done regardless, since we know that a higher score translates to a better benefit.
We live in India, so keytruda is currently not approved for early stage TNBC, and as such the company does not offer patient assistance. But that doesn't matter. Anything we can do to improve her chances.
Unfortunately, by virtue of living in India, we also don't have access to the latest clinical trails such as vaccines and adjuvant treatment to reduce the risk of recurrence.
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Yes, I know Keynote said it is efficient for any TNBC regardless of gene mutation. I took my biopsy block to another lab because here(Eastern Europe) they do not usually perform the test. My friend, the lab technician tested for it and told me I needed to have more than 10% PDL-1 and TILS positive to be efficient. I testewd 15% positive. This is not any medical advice. I hope you understand I`m only talking from experience...
...I was fortunate to be able to eat, in excess I could add, for the entire time of the chemo treatment. I packed up some 6kg and was a bit worried but my oncologist said it`s great, the time will come when I will lose the excess weight and she was wright.
Anyways Keytruda almost killed me... The side effects appeared at the end of my treatment as Hypopfisitis. I could have died if I didn`t go to the ER. The trial suggests that 50% of patients gave up on the treatment before completion because of severe side effects. I am one month post chemo now, approaching surgery date waiting, most of all, for the 4 months of last Keytruda effect to wear off. I will probably choose as adjuvant, if needed, Xeloda that seems to be highly effective on patients without gene mutations.
I wish you all the best , breastcancerpartner, and I really think we will be ok. I`m reading every few days some new treatment came up.
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Oh no. Im sorry you had such a severe side effect.
It's one of the things my wife and I are dreading most of all too, and the reason why she didn't want to try it out in the first place. Even our MO was hesitant to add it at the start because of the immune-mediated side effects.
But it all came down to the question of 'do it and regret it or don't do it and regret it'
We make our decisions based on what we know today, and we can only pray and hope it works in our favour.
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Hi breastcancerpartner,
this is a very good youtube channel of a chiropractic doctor, with very good and easy exercise for back pain, mostly strerching: SpineCare Decompression and Chiropractic Center
Check out the videos, not the first page. It takes me just a few minutes do decompress my back...
Hope it helps
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breastcancerpartner,
I watched a vlog yesterday of a young woman(from Ireland I think) with TNBC, lots nodes involved and margins less than 1mm. I know how important positive stories are. The vlog is on youtube, it`s called My Cancer Journey | Mastectomy & Breast Surgery Story by Dee Doherty
Hope it helps.
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Thank you so much nume.
Truly positive stories are what keep us going. Hope that the present is good and the future is brighter.
How are you doing?
My wife just received her 4 dose of Keytruda, and has 2 more weekly cycles of pacli carbo and then we meet the BS.
Keytruda remains on hold until after the surgery.
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breastcancerpartner,
I received extraordinary good news last week: my PET is clean! So I will have surgery on Tuesday, the 28th. I have one more week to go.
The lump, that I could feel right to the end(still can feel it), is nonreactive so almost certainly was killed by chemo. Me and my husband we laught and cried... It was a hard fight that left me with an autoimmune ongoing problem but we are optimistic for the first time after 7 months of bad news. Keytruda did it`s job...
Please let me know how is your wife doing. I wish you both all the best!
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How is your wife, breastcancerpartner? Did you schedulle the surgery?
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My daughter was told her lump was fibroadenoma, it would go away on its own. Dallas County stopped all elective surgeries same day, its elective due to it being " fibroadenoma . Well when she got to a surgeron it was Stage 3 Triple Neg . What I've learned from all this is you cant beat yourself up or question decisions you made. We walk into this blinded and feeling like we are in a hurry. Nobody has the right answers to what will work, research and speak up. :)
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Nume
I'm so glad you've got a PCR. It's the one piece of good news we all really hope for.
My wife had her surgery 1st week of April. They went ahead with Level 3 Axillary LN dissection because a number of LNs looked abnormal. She had the drain in for about a month.
Thankfully all 18 LNs came back negative. And the re excision specimen also showed no cancer cells. While we can't be a 100% sure of PCR since the main lump was removed beforehand, this is the best result we can hope for.
It's been a week since radiotherapy has started, and she received her first dose of adjuvant keytruda last week (dose 5 total)
However, we had a bit of a scare because the random cortisol came back low, but thankfully on retesting the morning sample, it's in the normal range.
The endocrinologist has still cautioned her about the possibility of hypophysitis and adrenal insufficiency, and now she wants to discontinue keytruda because it's really stressing her out. She wasnt too keen on taking it right from the start.
I completely agree that's it's a very risky treatment, and I'm not sure what to do. The MO has advised to continue as per the protocol.
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Sooo happy for you and your wife! I was hoping everything went well. And it did!
The MO knows best but I guess it`s best to avoid, unless absolutely necessary, Keytruda. I had pCr but somehow the quality of my life changed: I need to take hydrocortisone 3 times a day for the rest of my life and every time I feel tired or lack appetite, I fear an adrenal crisis…
It will take few months to be 100% after the treatment is over(it took me 4 months and I`m not there yet) but we can see the light at the end of the tunnel :)
XO
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Breastcancerpartner
It is definitely great news that there is no more sign of cancer! Try not to get too stressed about the lumpectomy thing. When I was diagnosed almost 12 years ago with Stage 3A (0ver 2.5 cm tumor and 4/11 positive lymph nodes) all they offered me was a lumpectomy and an auxillary node removal before chemo. I am from Manitoba, Canada and neoadjuvent chemo was not given as an option. So I never really knew (at the time) whether the chemo worked. That only became apparent as the years went by as I did not recurred. There are lots of women on this board who have had surgery then chemo and are far out from their diagnosis. When your wife is finished her treatment then start to research diet, excercise and supplements for triple negative breastcancer. I am not sure if you mentioned, but was your wife tested for any genetic mutations? I unfortunately had to fight to get my genetic testing but it was fortunate I did because I ended up having a Brac1 mutation. This is good information to know. Thinking of you and your wife…take care.
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Hi
Today is the final week of my wife's radiotherapy treatment. We met with MO and my wife told her that she doesn't want to continue with keytruda.
So that means the end of treatment and moving on to monitoring. I did ask if MO would consider Capecitabine, since I've come across several studies that have given it in 'unselected' (surgery before chemotherapy) patients with benefit, but she said that's not the guidelines they follow, and since the nodes are negative she can't justify adding it.
Asked about Signatera or testing for minimal residual disease, but not recommended.
Also we happened to get CBC done the other day, and my wife's Lymphocyte count was low at 500. Did anyone else face similar issues? I assumed it might be Radiotherapy or Immunotherapy related, but MO said unlikely and that we'll just monitor.
Kayrem, thank you so much. It honestly felt so nice reading your comment. The uncertainty is really driving me crazy, and I should just stop and breath instead of letting my mind just jump to the next thing.
We did get genetic testing done. All negative.
Nume. Thank you so much for your support. How are you doing? Are you feeling better with the hydrocortisone
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@Nume
How many doses of Keytruda did you end up taking
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Kayrem, 😘so happy to hear from you! You helped me so much during the treatment!
Breastcancerpartner, thank you for checking on us! Me and your wife have been fighting the same fight, in the same period of time, in different corners of the planet :) As did you and my husband.
I had 5 Keytruda, all in neoadjuvant setting, and now I am slowly adjusting to the new life-long adrenal insufficiency(it`s not that, my adrenals are ok but I have no cortisol release so the end result is the same). Actually I`m reading and watching all youtube videos on this disease. Unfortunately(or better said fortunately) hypophysitis was a very rare occurrence before the rise of immunotherapy so there is not a wealth of information…
Otherwise I`m doing my best to get over the last year, to move on in spite of a depression that came out of nowhere after treatment ended. I guess I kept busy with appointments and health concerns post surgery( 3 re-interventions). Did`t have the `` availability`` to get depressed… I perfectly understand how difficult it is to just ``stop and breath`` as you say. Having no mutation, no positive lymph node and pCr I was not put on any treatment either: It`s like feeling the floor moving after being on a boat for a long time.
Your wife`s blood analysis will normalize after a while but not so fast. I had my first ``all good`` blood test some 2 weeks ago, 3 months after the surgery, 4 months after chemo. I read somewhere it takes up to 6 months after treatment completion.
And something new(crossed my mind since it`s happening to me now and I know in India it`s hot weather too): avoid insect bites on the arm on the lymphadenectomy side.
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Nume,
Im so sorry you've had such a tough time since completing treatment, and I really hope things have settled down.
I assume you have had Keytruda permanently discontinued. What I think is that being approved in the curative setting for TNBC, its quite tricky to balance the benefits vs risks of this treatment. There really is no clear cut answer.
Ive persisted on my 'quest' to figure out if Capecitabine would be beneficial. Being an older drug, there are a lot of studies, and most of them point towards a benefit.
So i had my wife's case discussed through a national portal which analyses international data and tumour board decisions, and finally refers the case to a leading specialist to advice accordingly.
They recommended adding adjuvant Cape. I shared this with our MO, but she has asked me to consult with a renowned Breast Oncologist, and she will incorporate his advice. Trying to coordinate this.
Thank you for the advice about mosquitoes. I hadnt really thought about it but we're being more careful now.
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Kayrem,
Would you have any advice on diet or supplements that we could incorporate?
Ive read that high intensity exercise has shown a benefit. by when I asked our MO, she said its generally for hormone positive. Still, exercise will help in overall well being
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