After a 3 yearly mamogram, a recall to further tests and a biopsy, I was given a diagnosis of intermediate grade DCIS.
Yesterday, I had a WLE and now have it’s the wait for final results from pathology (or is it histopathology?).
The surgeon and BCN have said that of course we hope that the results from these tests in the next weeks, are the same as the original biopsy, but also that it might show High grade DCIS cells, or that there’s invasive cancer.
I’m just wondering if there’s anyone on the forum who’s at a similar stage of waiting for their results from their lumpectomy/WLE?
Or if you have had the results and they came back different to the original biopsy diagnosis?
Or any idea of how often do the lumpectomy results come back different?
It would be good to hear from anyone with similar past or present experience.
Hi funnygirl
Welcome to the club nobody wants to join but you’re in great company on here with people who know what you’re going through
I had a 3 yr mammogram recall and was told 22mm DCIS intermediate grade, after lumpectomy the results were 55mm intermediate grade 2 DCIS plus 2 tiny invasive tumours so the treatment changed from just radiotherapy to radiotherapy plus Letrozole for 5 years.
But so long as the outcome is that the cancer has gone, I’m keeping upbeat about the pathway I’m on.
I wish everyone on here all the very best.
Hi
Waiting is the absolute worst so sorry that’s where you are at for now. I had something of a similar experience and I tend to think that it must be common as they can’t really know the diagnosis until the remove the problem area in surgery and investigate it. In my case I was diagnosed with a small area of non-invasive cancer, DCIS. After the surgery this turned out to have 13 mm invasive cancer alongside it. The DCIS had been grade 1 and the post surgery cells were grade 2. That was a shock by the surgeon said it didn’t change the clinical picture that much - it meant they would recommend radiotherapy which had been unclear before. I had to have a second surgery to check the lymph nodes, which were clear. I’m just finished my active treatment and starting hormone therapy. There’s been lots of waiting and gaps all the way along - the problem was picked up in a mammogram in May but I was recalled for further tests which happened in June. Results from those were July. Surgery August…radiotherapy end of October and only now (end Dec) starting hormone therapy.
I hope this helps - but waiting is the worst x
Hello tt59,
Thanks for replying. It’s good to hear from people going through similar diagnosis and treatments.
At this early stage of joining the club, It is still surprising me that no suspiscious calcifications can be seen seen on a routine mamogram, and yet three years later there can be quite a few that show up.
I have been told there’s a slim chance I’ll need radiotherapy, but all based on what they find.
I am glad to hear that you have a treatment plan and you are keeping upbeat. All best wishes to you also
Hi,
Thanks for messaging with your own experience. I’m sorry to hear that you are on this path but glad that you are now well onto a treatment plan, and I’m sorry it must have been quite a shock to hear the new diagnosis after the surgery.
I agree, they cannot really know anything more in advance of the specialists sending the results back, so they can only warn of possible variations or scenarios whilst we wait.
When you had the second surgery on the lymph nodes, did they remove any, or can they somehow check a sample whilst you are under anaesthetic?
My initial diagnosis of the calcifications was 14mm which is small.
The surgeon said he removes the initial lump and sends it to be xrayed, and if it has a margin clear of any calcifications he would then sew me up, but if further calcifications were seen on the margin at xray, he would remove some more, then complete the surgery. I’ll find out next week when I have a wound check, whether it was taken in the first excision or not.
Thanks for sharing your personal story. It must have been a lot to deal with since May, and it not only takes up months for you to reach where you are now, but a lot of emotional and physical energy. I hope you have lots of support. Take care x
Hello, I had a lumpectomy and sentinel node biopsy having been told I had a 1 cm DCIS. I’d had a clear mamagram only 6 months before. The pathology, in my experience, is minimum 2 weeks and can be up to 4. However long it is, it is torturous. My nodes were clear but they then told me I had grade 3 lobular BC and needed a mastectomy. I think lobular is like shrapnel, lots of bits all over the place so harder to see on scans etc. And then jf you have dense or lumpy breast tissue that also makes it difficult to detect. I also had radiotherapy, hormone therapy and will start Bisphophonates next week. I wish they would be more honest and realistic. They really don’t know what they are dealing with until it is out and under a microscope. I totally empathise with your anxiety and the waiting just exacerbates it. I do hope your results are the best you could hope for. Try to distract yourself while you wait.
I am sorry to hear all that you’ve been through. It cannot have been easy to go through the lumpectomy, only to then be told you needed a mastectomy. Excuse my lack of knowledge yet, but isn’t the radiography usually given after a lumpectomy (but not needed if you’r going on to having a mastectomy?).
When did it all begin for you?
I did have some good distractions between the mamogram, the re-call and the wait for surgery. Now my family are home for a few days which is wonderful.
Will need some new distractiions once they’ve left!
Hi I am no expert but my understanding is that you are less likely to need radiotherapy if the cancer is contained with clear margins. I guess the grade and other factors also influence their decision on the need for radiotherapy. I think for some it is just an insurance but I was told I really needed it. Mine all started last January when I found the ‘lump’ myself. When I had the lumpectomy in March they said I ‘may’ need radiotherapy but they weren’t sure. I needed it after the mastectomy in June because it was lobular, ‘multi-focal’ so there could be cancer cells hanging about all over the place, particularly in the scar.
I hope that helps. Enjoy your time with your family x
Hi everyone, how is everything going with you all?
I appreciate your replies @laneycass@cosmos1@tt59 , you know what the waiting game is like and I’m amazed that I have results back from pathology after my lumpectomy before Christmas.
Today I had some good news, although the cluster or tumour as my surgeon calls it, was a little bigger than originally thought, he did get it out with clear margins and it was all intermediate or grade 2 showing in the post lumpectomy pathology. and amazing that the pathologist worked over Christmas, so I heard quickly.
I said how this has been my most nervous point in this process so far, fearing any new discovery after the lumpectomy, and he agreed! he had feared they may have been too conservative in the operation and that if they hadn’t got it all, they would have needed to operate again.
Now the next waiting is to see whether they advise radiotherapy to treat any other cells in the breast which aren’t yet visible.
Any thoughts on that would be appreciated from anyone in a similar scenario? If the Radiotherapist is borderline on whether to offer Radiation and left it up to us, would you say yes or no?!
The radiotherapist may advise not to have radiotherapy, but that may result in a further WLE in a year or so if something recurrs. But if they do radiotherapy I think that should kill off any rogue cancer cells?
He said radiotherapy now, would also prevent any further lumpectomy in that same breast (as it cannot have radiotherapy a second time) and would result in any further cancer treatment being a mastectomy. So much to get my head around.
Not sure if I can link this to a seperate thread about radiotherapy…
Hi funnygirl
Wow that’s awesome news for you and as you say, getting the results quicker than you thought is brilliant.
I’m starting my radiotherapy on 3.1.24, my personal view is that I’ll take whatever they suggest for me, to enable me to feel as confident as I can that they’re zapping any additional rogue tumours we are not aware of!! I’ve hated the last few months on this rollercoaster of emotions, appointments, treatments and waiting waiting etc, so I feel i need to get back my life!!
I can see that it’s a big decision, and it’s very personal to each one of us to make the decision which is right for us and our situation.
I’m not looking forward to the treatment but I’m absolutely going for it!!
I wish everyone the very best going forward, take care xx
Wow! Excellent news, thanks for sharing that. It is great to hear positive stories on here.
I had a lumpectomy then a mastectomy (no complications or pain) and then rather belated radiotherapy. I think for some, radiotherapy is an optional insurance but for me I was told it was necessary. I think you should be led by your team as everyone’s diagnosis is different. Radiotherapy isn’t risk free. In my opinion it is more damaging than the surgery. There is a risk to heart and lungs, then there’s the ‘burns’ and damage to cells and fatigue. I am now experiencing excruciating shoulder pains which may also be related. I certainly wouldn’t do it if you think you can safely avoid it but then that’s the million dollar question!! I think on the list of difficult things, decision making is right up there with waiting. Talk to the professionals and get their view on risks / benefits to help you decide.
Good luck xx
Hello,I am just back on the site and wondered how you have been and hope that the radiotherapy was not too awful for youand that you have nowbeen able to get back to some normality in life. Best wishes x.
Hi, I’m sorry that I am only now replying and sorry to hear that you had both a lumpectomy and mastectomy. Did your shoulder pain go away in the end?
I had my lumpectomy and clear margins so the advice was to not have RT but to ‘save it in case needed in future’.
Good luck to you also x
Hi funny girl
Thank you! Yes I’m almost 7 months post Radiotherapy and doing really well. I saw my BCN nurse only a couple of weeks ago for the follow up and now have a breast prosthetic which is wonderful, it gives me so much confidence when I’m out …… I feel like I actually have ‘matching’ boobs ha ha
I have sharp shooting pains still in my left boob but the nurse explained that this is normal following the radiation and could continue for 12 months at least.
My nurse also said my first mammogram following treatment will be 12 months after the radiation ended. It’s not as I assumed, 12 months after the operation so I won’t worry now when I’m not called in during September . She said that the radiotherapy can alter the image whilst it’s still working so they prefer to wait. Have to say I’m already dreading my next mammogram but hey we’re tough cookies on here and we’ll all help each other through I’m certain of that!!
I hope you’re well funny girl and wish everyone the very best xx
Good to hear you avoided radiotherapy. Radiation may be sometimes necessary but it is not a good thing! I have a friend with throat cancer who had radiotherapy 10 years ago. He’s had a recent recurrence and can’t have radiotherapy again because he had the maximum back then. So whatever its effects, they are still there for all that time!
I saw the NHS physio for the shoulder pain and she worked a miracle. It was horrendous but she fixed it in one go. I never did find out if it had been caused by the surgery.
I am so glad that you’re doing really well after the RT and that the breast prosthetic has given you confidence when going out. It must be reassuring to have your BCN with guidance and answers to questions, and as you say, at least you won’t be waiting for a call-in for mammogram in September I hope that you’re getting less of the shooting pains now.
I am feeling well and have managed to keep busy which has been a distraction from my first 12-month mammograms and ultrasound next month. I’m not sure what to expect x
That’s really good news that the physio was able to sort out your shoulder pain, I hope it’s still good now.
I’m sorry to hear about your friend, that must be so tough for them.
Sending all best wishes x
. She said that the radiotherapy can alter the image whilst it’s still working so they prefer to wait. Have to say I’m already dreading my next mammogram but hey we’re tough cookies on here and we’ll all help each other through I’m certain of that!!
I hope that you’re getting less of the shooting pains now.