Conflicting information at diagnosis appointment

[monicanatura]

Hi Rachael
I was Diagnosed in May 18 with 3 different types of BC over a 4 week time period, I was initially told I had DCIS, then a week later it was IDC, then a week later it was IBC. I was very confused for 5 weeks, then oncologist confirmed it was DCIS with a mix of IDC, with lymph node involvement.
I had 3 months 3 weekly EC, then weekly Paclitaxal.
During chemo, my lymph nodes shrunk significantly, however the chemo only partially reduced the tumour.
I had a Mx in December, with clean margins and 5 lymph nodes removed.
Surgeon confirmed he got all the cancer out, I now start radiotherapy in the next week, then hormone treatments.
It can be very confusing initially, however once the medical team know what they are dealing with, they always have your best interests at heart.
I have supported my treatments with Acupuncture, Manual lymphatic drainage, Spiritual healing, homeopathy and herbal medicine.
I feel good, no longer toxic because the cancer is out. We all have our journey, it’s a challenging journey, however this will make us stronger.

[Jobey68]

Hi Racheal, Good on your team for realising things weren't adding up, as there was evidence of something going on with your nodes then they will suspect invasive must be in the mix as pure DCIS can't spread. 

Not what you want to hear of course but it is what it is and needs to be dealt with. Of course you can insist on being told everything upfront, if only they had an incling of what it feels like to be drip fed information then Im sure they wouldn't do It!! 

Im glad you had a good holiday and were able to leave it at home so to speak 😊 Xx Jo 

[Jas58]

Hope you get all the information you need soon. And a successful treatment plan x

[RachaelHM]

Dear Dizzybee,

Thank you for the information. I’ve now had my follow-up appointment with the consultant, and the extra x-ray guided biopsies (they took 45 - yes, 45 - this time... they really want to know what they’re dealing with ahead of treatment 😂).

You were spot on! The consultant suspects there is invasive cancer that was missed in the first biopsy and that this has spread to the lymph nodes. The extra tests are to see if treatment should start with chemo or mastectomy.

Thanks too for the advice. I have now managed to convince the consultant to give me all information as soon as it is available. Not knowing is the worst! I know few more informed and should have a treatment plan by the end of next week. 👍

Thanks again for you support, wonderful women in my phone! 👋

[Dizzybee]

Rachael, it sounds to me as if they are concerned that this is an invasive cancer with possible lymph node involvement, but they haven't managed to get that confirmed from the sample they have so far. Sometimes the biopsy doesn't reach the right area so they need to try an alternative method. They may have only got DCIS in the sample but believe there may also be an area of invasive ductal carcinoma that they haven't managed to reach. That could explain the iffy lymph node .

One reason for delays is often they decide what to do in the multi disciplinary team meeting, where they review cases. And they usually meet on the same day each week, so if your biopsy results come through on a Thursday they may not get discussed till the following Wednesday. That's  what caused me lots of delays anyway.

All the delays leave you in limbo and trying to guess where this is going. It's very hard to stop your imagination working overtime when you don't really understand why things are happening.

I found the best way to get answers is to be up front and tell them that you don't understand what's happening and it's more worrying than being told the facts. I started out trying to be a good patient, but actually you need to be an assertive one, and the better informed you are the more information you get. I think they're also very wary of giving patients more information than they want, some people are more comfortable with not knowing. So if you do want information, I'd go in with a list of questions written down.

I remember so well how horrible this stage is, so sending you a huge hug, and I hope you get answers soon, and even better, a treatment plan. 

[RachaelHM]

I’m afraid I am now even more confused!

After a wonderful short break - where I really did manage to relax and not think about anything BC-related - it has all come rushing back this morning. I’ve been booked in for another round of biopsies, this time at a different hospital and under x-ray guidance. I’m yet to see the consultant again. When I asked the BC nurse if she could explain why I needed these additional biopsies, her response was that the radiologist was concerned about the lymph nodes looking enlarged. However, they knew this a week ago - so why only arrange the additional biopsies now? The nurse wouldn’t elaborate on whether the lymph node FNA biopsy results from last week were back yet.

I am increasingly frustrated that I’m being drip fed information and not being given the full picture. I also don’t know anyone else who has gone through this process, so it’s still very new to me! If I have a plan of attack and know why various things are being suggested, I will feel far more in control and able to more forwards with treatment. Could anyone shed any light on the situation? Failing that, could you recommend any questions that I should be asking the consultant when I next see him so that I can try and understand what is happening?

Thank you all for the wonderful support. This forum is amazing and so incredibly helpful!!! Xx

[RachaelHM]

Thanks for the sensible advice 👍 I will endeavour to take it on board and enjoy our holiday 🙂

[Jobey68]

Hi Rachael , 

Its so confusing at this stage when they are still doing tests to gain an accurate diagnosis, they can only tell you what they know from the biopsy and imaging now until after surgery when the entire lump will be checked. I knew I had invasive from the off but I also had some DCIS which I didn't know about until after surgery. Things can change so try to remain open minded and not Google too much as you don't have all the facts just yet so can't really find the answers. 

Go on your holiday and try and park your worries until you get back, you can't do anything about whats happening and with hindsight spending time endlessly fretting about what ifs is just exhausting and pointless!

At this point all you can do is speculate which drives our brains mad so try and just go with the flow until you know for certain, having the full facts is so much easier to deal with whatever the outcome, I think we all here will agree that limbo land is the worst place to be. 

Take care and try and enjoy your holiday Xx Jo 

[RachaelHM]

Hi Jas, thanks for the book recommendation! Like the author, I’m also Australian (albeit one that is now a British permanent resident), so will potentially understand any local references that sneak in anyway.

Xx

[Jas58]

Hi. Sorry to hear you find yours of here but it’s a very welcoming group. I would heartily recommend a book called DCIS taking control by John BOYAGES . He is Australian but the book is very easy to follow and he is a world expert. I found it invaluable when I was diagnosed 2 years ago. The problem with DCIS is there is sometimes an invasive cancer hiding within and I’m sure that’s what your team want to try and ascertain. Often this can only be done after surgery. Be sure to ask lots of questions if you feel unsure. Good luck 😉 with it all and try and enjoy your holiday. Easier said than done I know

[RachaelHM]

Hello, I’m looking for some guidance about what to expect. I saw the consultant this morning and was diagnosed with DCIS, following my trip to the breast clinic last week where I had an ultrasound and core biopsy. This was a big surprise, as I’m “only” 33 and have a 1 year old little girl.

Today the consultant and the breast care nurse were very lovely and explained that I will need surgery but that they needed to run more tests to establish more information about the growth. I was given very little in terms of quantitative information, aside from a booklet. I had a mammogram and an ultrasound of my lymph nodes, followed by a FNA lymph node biopsy as the radiologist was concerned about one of the nodes. Surely there can be no lymph node involvement if it’s a non-invasive cancer? The nurse who was present for the scans also made a comment along the lines of “given that you have high grade DCIS...”. No one else had mentioned that the growth was high grade. All I was told was that there was no evidence of invasive cancer in the core biopsy that was taken last week. Aside from the high grade comment, the booklet I have subsequently read states that “if someone with DCIS does have breast changes (such as a lump...) it’s likely that they will also have an invasive breast cancer”. I have a rather large palpable lump - that is what took me to the breast clinic in the first place.

All in all, I’m a bit confused by what seems to be conflicting information. I’m going on holiday tomorrow for 5 days with my husband and daughter and I’m concerned that I will ruin the trip for them by being preoccupied and worried. Can anyone provide additional information or guidance? Or direct me to other reputable resources? I don’t want to blindly google and then end up unnecessarily concerned, but I want to be informed and prepared. I intend to research options and outcomes so that I can make an informed decision when presented with treatment options. (I expect I will go along with whatever is advised, but I would like to be armed with all of the relevant information anyway.)

Apologies for the long post, and thank you for those who managed to read it all!! 😘