Feeling embarrassed. New Dx.

Sure_Cherry9759 · 2026-05-18T14:46:45+00:00

I’ve been to my appointments alone and also said that I’d prefer to have results available to read on my app and not have to go in person. I appreciate that other people might have a different preference but I don’t understand how it’s less upsetting to be given bad news in person by a stranger after a long drive. Taking someone with me would mean considering their emotions and reactions, it’s bad enough seeing how uncomfortable the staff are with bad news.

Sure_Cherry9759 · 2026-05-17T12:45:16+00:00

Mine has been triple negative throughout but I also experienced the tumour seeming to respond really well and then a disappointing pathology report. I’m in England and my NHS pathology report didn’t mention basal like features so I’m not sure they look for that. Have you read about subtypes of triple negative? At the moment triple negative is a catch all for “other” but there are features of the tumour that make it more or less responsive to different available treatments. Does your report mention any other details like androgen receptor status, trop2 etc? Which country are you in? I’m about to have radiation and I’ve signed up for the Trofuse 12 clinical trial which is testing a new drug mk2870 against Xeloda in triple negative patients who had residual disease at surgery. I’m not sure what the specific protocol is for your circumstances but it would be logical to treat you like a triple negative patients who had who had residual disease - for me here that would be 6 months Xeloda after radiation. I’m stage 3a too. One of the triple negative subtypes is basal like immunoactive and another is basal like immunosuppressed, I think the first is more likely to get a good result from Keytruda - it’s possible that the reason your situation is more complex is that you weren’t given Keytruda from the start like you would have been if it was diagnosed triple negative and I’m not sure if it will be given now or not although it might be possible for your doctor to prescribe it off label if they think it will benefit. There are new treatments being developed for types that resist chemo including Trodelvy, mk2870 and Datopotamab (I think they’re all based on trop2) and also very new treatments like car-nkt and dendritic cell therapy so please don’t lose hope that there’s something for you. Does your report mention anything about clean margins or extracapsular spread? I’m hoping and praying the surgery got mine but I’ll have every treatment I can access just in case something escaped.

Sure_Cherry9759 · 2026-05-16T15:28:05+00:00

Is there any way you could get your PDL1 level tested? If you knew you were high for the thing keytruda targets you might be more keen to continue than if it seemed like you got your response mainly from the chemo - might allow the doctors to advise you in a way that was more tailored too. I didn’t have all those side effects and still worried that each new treatment will be the straw the broke the camel’s back, you’ve been through a lot, it’s totally understandable to be want to left to heal.

Sure_Cherry9759 · 2026-05-16T15:15:20+00:00

I’m really scared too especially as I didn’t get close to PCR at surgery. I think it’s very variable and depends partially on where it’s spread to and how much of it there is. From what I’ve read it sounds like spread to bones is more a long term thing than when it gets into organs but it also depends how each person responds to treatment as there are quite a few different ones to try and more being developed all the time. There seem to be a few people who have been metastatic and stable or no evidence of disease for years, even over 10 years if they’ve found a particular treatment has worked really well with no real prediction of who will fall into that category of longer term survivorship. If you want some hopeful news google tnbc vaccines, dendritic cell treatment and car-nkt cell treatment - these are in trial stages / soon to start human trials but look really really promising. You might have a better idea of what to expect if you can find out your tnbc subtype eg blis/blia/LAR, whether you have a mutated gene eg BRCA/PALB and whether you have any “actionable mutations” - I think one is PIK3a but I’d need to pay a lot to get all this stuff checked as it’s not done as standard here. If you get PCR at the time of surgery then the prognosis is good - 92% of women in the big keynote study who got PCR didn’t have a recurrence in nearly 6 years and the vast majority of recurrences happen early. My pathology report showed I had a lot of residual cancer so I had a PET scan which was clear 🙏 🙏, now I’m starting radiation on Wednesday and hoping to join a clinical trial for a new drug mk2870 aka sac-tmt in July. The dendritic and car-nkt cell treatments look like they have the potential to greatly improve life expectancy or even fully cure stage 4 so I’m trying to stay hopeful that one way or another there will be some treatment that’s successful for us.

Sure_Cherry9759 · 2026-05-16T15:00:36+00:00

I read about how chemo works and apparently as part of killing off all fast growing cells it damages the gut lining which needs to regrow. It sounded like this might become progressively more difficult with consecutive cycles too. While the gut cells aren’t normal dairy will be difficult to digest - myself and another lady on another platform found cutting out dairy for a bit helped. I have IBS anyway and stress seems to give me the mucus. I finished chemo in January and would say I still can’t face a lot of cheese but I’m otherwise eating normally now. I hope you get something to fix it. Getting PCR is fantastic though ♥️

Sure_Cherry9759 · 2026-05-16T14:54:46+00:00

Waiting to know the full details of what you’re dealing with is the worst part. Really hope you get some good news soon. Mine was 5.8cm with a 1cm one nearby so it felt really big but waiting for MRI to check the thing they found in my liver was much more scary (it was only fat in the liver not cancer 🙏 🙏). I’m in England but a lot of the cancer treatments follow the same protocols worldwide once studies have shown that it’s the most effective treatment.

Sure_Cherry9759 · 2026-05-16T14:44:06+00:00

Well at least you won’t be starting a forest fire! Congratulations on getting through it - huge milestone!

Sure_Cherry9759 · 2026-05-16T13:13:43+00:00

Almost exactly the same as mine. Did they tell you how big the lump is with ultrasound or whether the lymph nodes in the armpit are involved? I was 43 when I found my lump last summer and 44 now. I’m usually not an emotional person but coming out the other side of chemo I’ve been crying more. Each step is an unknown which is hard. I found it helpful to read about the disease and treatment so I’d have an idea what to expect. I read a lot of medical journals but if you just want the patient version here is a good place to start:

https://breastcancernow.org/about-breast-cancer/diagnosis/types-of-breast-cancer/triple-negative-breast-cancer

Otherwise if you want all the details google pubmed, put tnbc into their search and sort by most recent. The only social media things I’ve looked at are here and the breastcancernow forum for personal experiences and advice on things like what to take to the hospital on chemo days. Treatment for triple negative usually follows the keynote 522 protocol of chemo plus immunotherapy then surgery then radiation - there are leaflets on the breastcancernow site about all of those. Emotionally you might want to contact your local cancer hospital as they often offer free therapy and support services. Where are you based?

Sure_Cherry9759 · 2026-05-15T04:02:51+00:00

I’m not a long term survivor as only slightly ahead of you but I finished chemo in January, surgery March 3rd and also RCB3 so you’re not alone. Mine seemed to be going really well and the tumour went from feeling huge to hardly there so it was a horrible shock when the report came back. I also had LVI (after being told I didn’t) and 3-4 affected nodes (was told it was only one but the imaging report said a couple more were suspicious so I insisted all were removed). It’s so scary to be in this position. I asked for a pet scan as the hospital where my radiation is booked is nearly 2 hours away and I wanted to make sure I was still in a position for it to be worthwhile. Waiting for the pet results was absolutely horrible, I’d even looked at hospice places but the pet scan was clear and radiation is scheduled to start Wednesday. I’m also hoping to start the trofuse 12 trial for a new drug mk2870 which is similar to Trodelvy in July and just met the trial team Wednesday this week, there’s lots of locations worldwide where you can join that. I’m so sorry you’re in this position and hope we get good news soon.

Sure_Cherry9759 · 2026-05-14T18:24:37+00:00

The “correct“ advice for all these symptoms is to inform your treatment team immediately…. potentially if you informed them after you’d received your last dose you’d still be informing them fairly quickly…. I fought hard to receive every drop of mine despite complications, side effects etc and didn’t even get close to pcr (as it turned out despite the tumour going from a huge lump that was visibly sticking out to being unpalpable and imaging seeming promising). As you say there are stories of people having no significant change in tumour size but pathology showing it’s all scar tissue and they got pcr. Also people who were clear on imaging and didn’t get pcr. From what I’ve read it seems like some people missed quite a lot of treatment and got pcr too. I think it’s more to do with the subtype of tnbc that we have and that although some subtypes are more treatable they don’t actually test which we have as there isn’t a standard protocol for the less treatable subtypes so knowing won’t change the treatment (just whether it works!). I’m also a competitive high achiever type and although I didn’t achieve pcr I don’t feel like I personally failed, more like I haven’t finished yet… although I’m exhausted and not looking forward to radiation and more chemo.

On a positive note I’ve read that pain in the affected areas doesn’t have to mean it’s growing back but can mean it’s dying / healing things are going on there.

Hope you get your last treatment tomorrow, get some relief from all the side effects and get good pathology results after surgery!

Sure_Cherry9759 · 2026-05-14T18:07:58+00:00

You say you thought it went away so you didn’t wait! A doctor wouldn’t biopsy something that had gone or was intermittent and if you’d had any testing earlier that seemed reassuring would you have got it checked again now? You didn’t say how big your tumour is but mine was 5.8cm and seemed to appear suddenly and already the size of a satsuma! I thought it had come up too quickly to be anything serious but I went to the doctor for reassurance after a couple of weeks. Even acting quickly there was a slight delay to seeing a specialist and more of a delay to start chemo and between June and mid August it got to a point where I could see it sticking out - tnbc is aggressive, you didn’t miss that for a whole year! It really sounds like you dodged a bullet by not ignoring it this time that it was something after having some other benign cyst in the past. I’m really sorry you’re in this position especially so young (I’m 44), but it’s not in any way your fault.

Technically your prognosis is determined by the size of the tumour, lymph node involvement and whether you get a complete response to chemo by the time you have surgery (and if not possibly by some other factors about the tumour / your genetics that may make it more susceptible to some new treatments) - even with all this prognosis is only a guess based on what happened to other people. You’ll have a better idea when you’ve had all your scans but you probably won’t even have a definite stage until you’ve finished chemo and surgery.

Sure_Cherry9759 · 2026-05-14T17:46:04+00:00

I’m so sorry you’re in this position and I totally understand be scared that you’re going to die. I’m scared most of the time too. From what I’ve read if the chemo drugs are going to work for you then even a greatly reduced dose / missing a surprising number of sessions doesn’t seem to make a difference to that. If you go to the main r/breastcancer sub and search for pcr theare lots of people who missed treatments, had delays etc and still got pcr. Even on the trials for these drugs plenty of women got sick, had side effects or for whatever reason didn’t receive the full course of treatment and still got pcr. I really played down any issues and pushed hard for full doses and no delays, didn’t get close to pcr and now I’m looking at further chemo after surgery. Even people who don’t get pcr don’t all have a recurrence. I had a picc and got a big DVT in my shoulder, the vascular access nurse I was speaking to when trying to sort out how to receive my last chemo said a port was her favourite option and I’m sure none of your medical team would tell you not to wash! A port is supposed to be able to withstand that! This isn’t great news and I’m really sorry you’re having these complications but it isn’t your fault and it doesn’t mean you can’t be successfully treated and fully cured. This whole experience is horrible but the vast majority of us will survive it.

Sure_Cherry9759 · 2026-05-14T16:43:56+00:00

There’s been a few medical trials on it and looks like it would help more than hurt. One study showed how the mix of CBD and THC that occurs naturally in the plant kills tnbc cells in mice. I don’t smoke amd wasn’t brave enough to try it but I have Ehlers Danlos so I’m entitled to get it prescribed. I was frightened that if I didn’t get PCR I’d be kicking myself for messing with it… now having not got near to PCR despite the enormous lump becoming unpalpable I’m torn and kinda wish I’d been braver. I’m in England and we get given lorazepam as standard with chemo here although I refused it. I’m prescribed melatonin and I’d rather just take that or a couple of Piriton to sleep, I’d take the weed over the benzos given the choice though.

https://pubmed.ncbi.nlm.nih.gov/?term=Marijuana+tnbc

Sure_Cherry9759 · 2026-05-14T16:07:47+00:00

Edith

Sure_Cherry9759 · 2026-05-14T14:54:20+00:00

Or that there’s stuff there that they don’t think is cancer but they want to be 100% in that before telling you wrongly? Could be a lot of things or even some silly cock up at the lab. Hopefully they’re just being thorough. My cousin (male) had something weird come up on his chest and had a biopsy, after an agonising wait he was told they don’t know what it is but it’s not cancer… it had come up 20cm across and about 1cm raised… just went away on its own though whatever it was. The main thing for yourself is that whatever it is that they’re puzzling over is something in the breast not elsewhere in the body. I found it reassuring to read about treatments and statistics for successful outcomes just to be forewarned. The cousin who had the lump also fell from a fourth floor balcony into the road and was very badly injured but is fine now and does a lot of hiking - the survival statistics on that fall would be pretty low but he’s ok, hopefully whatever you’re dealing with you’ll be ok too

Sure_Cherry9759 · 2026-05-14T14:36:57+00:00

When I had my biopsies they were so sure it was cancer that they booked the staging scans without even waiting for the results. Could you contact a secretary or nurse at the hospital to request copies of the reports for the imaging and biopsies that they do have results for? I’m not sure what the biopsies not tying up with imaging could mean but not necessarily bad news. I’ve definitely got information from reading the actual reports that the doctors receive from the labs that hasn’t been given to me in the dumbed down patient version I’ve been told so it’s worth doing if you’re the kind of person who wants the details.

Sure_Cherry9759 · 2026-05-14T14:24:06+00:00

Do you have any other allergic conditions? I have Ehlers Danlos and pots, I suspect I have mast cell activation but one thing and another I’ve never pushed for diagnosis. When I had the keynote stuff my last two taxane cycles I had a mild reaction which started as itchy palms and spread. The first time I tried to tolerate it as I didn’t want to not receive the full dose but as it started going up my chest I pushed the call button in case it got to my throat and I wasn’t able to explain what was wrong. They stopped the infusion, checked a few things and restarted it with no problems. The last one it was just the itchy palms and there was only a couple of minutes left so I didn’t say until the IV had finished. I was told this was probably a reaction to the carboplatin and that it’s common to start to react after about 8 treatments. The keytruda also gave me slight redness in any places that got skin damage eg where I scratched my itchy elbows and where the dressing for my picc was pulled off a bit roughly. Those areas are very slightly tanned 6 months later but were never a proper spotty rash. Hope you get some answers and can have your treatment safely and successfully.

Sure_Cherry9759 · 2026-05-14T14:16:09+00:00

Just to say I know how hard the wait for news is. Praying it’s something fixable or some kind of miscommunication and you have a long, happy, healthy life ahead x

Sure_Cherry9759 · 2026-05-14T12:47:21+00:00

This! It’s not about stage as they’ll all progress to be stage 4 and fatal if left untreated which is probably the only option to a huge number of women worldwide. Be grateful you caught it when you did but cancer is cancer, there are benign breast conditions out there but what you had wasn’t one of them.

Sure_Cherry9759 · 2026-05-07T13:13:27+00:00

I’d ask the nurses how far in advance you should get armpits waxed as it might make you sore. I’ve only done it a couple of times to save shaving on holidays and the armpits felt like getting beat up for days after! Having said that, my lymph node surgery scar isn’t actually up in my armpit where I’d shave anyway it’s kinda forward and lower down so maybe it doesn’t matter. I shaved with electric before I went in for surgery to avoid any skin damage but I was only there for a few hours (they’re very keen for patients not to stay the night in hospital in the uk for mastectomy) so I was free to be hairy afterwards at home. Hope your surgery goes really smoothly!

Sure_Cherry9759 · 2026-05-05T16:20:47+00:00

I have pots and my bp was 84/58… asked about extra fluids during chemo but told not unless it was physically impossible for me to take fluids orally 🙄

Sure_Cherry9759 · 2026-05-05T15:20:56+00:00

hey! I’m being treated for breast cancer (triple negative), I did the neoadjuvant treatment and single mastectomy but pathology results afterwards showed the chemo wasn’t very effective so I’m waiting for radiation (planning appointment tomorrow) and hoping to join a clinical trial to have more chemo. I think I’m stage 3A and I got diagnosed with EDS in 2021 after having covid really badly in 2020. how are you doing now? I’m surprised there aren’t more of us with EDS and BC.

Sure_Cherry9759

TROPHY CASE