Hi Everyone, this is my first time posting. I was diagnosed in May with lobular cancer. Apparently I won’t know the stage etc until after the surgery. I had an MRI within couple of days of diagnosis which showed a 2nd area of concern. Now here we are at the end of August and we still don’t know whether it’s malignant.
The results of the first set of biopsies took so long to come back that my first surgery date was cancelled. When the results were back they were clear, but the radiologist thought the clip in my breast was in the wrong place so they weren’t sure whether the right area had been biopsied (those of you with lobular cancer will know that it’s really hard to see on ultrasound). So, more biopsies were done over two weeks ago and the 2nd surgery date was cancelled. The radiologist who did these biopsies thinks that, based on how things look on the MRI, that it will be a 2nd area of cancer. There’s also a 3rd unidentified shadow on the MRI.
I found out this morning that the results aren’t back yet. They wanted to cancel my clinic appointment tomorrow and my surgery date next week. I’ve managed to persuade the surgeon to meet me tomorrow anyway to discuss my options.
As I understand it, that will be to have a mastectomy next week, or wait yet another 2 weeks to see whether they can still do a lumpectomy or whether it’ll have to be a mastectomy anyway.
All these delays are really stressful and starting to get me down. Despite the surgeon assuring me that the cancer won’t have grown or spread during the last 4 months, I find it hard to believe her.
I feel like I should just have a mastectomy next week. If the cancer is so hard to see, I’m not sure I’ll ever be convinced that they haven’t missed something even if the latest biopsies are negative.
It all sounded so straightforward 4 months ago. I wish someone had warned me that it might get so complicated.
I’m sorry you are going through this. Two years ago I had a similar situation. I had cancer diagnosed and surgery booked then MRI showed up another area to be tested so surgery was cancelled. The results came back as benign and surgery booked again. My surgeon wanted to take this second area out too which would have meant a lot more tissue removed and worse cosmetic outcomes (which I agreed to as just wanted to get it done, even had the pre op), MDT didn’t agree with this and there was also some fussing about whether the second biopsy had been done properly and so surgery was cancelled a second time. Then there was umming and ahhing about possible MRI biopsies (long story!) but eventually all my scans and notes were reviewed by a leading expert who confirmed the biopsy had been performed correctly and surgery could go ahead removing just the known lump (which actually turned out to be three).
It wasn’t as long a period of time for me, in my case it was 7 weeks, but I can understand how difficult the uncertainty is and how devastating it is to have surgery cancelled not once but twice. At one point I was told if wanted a mastectomy the extra stuff wouldn’t be needed so it could be done straight away. I almost agreed because I was frightened, worried about spread and just wanted something to happen. With hindsight I’m glad I didn’t make a hasty decision. In the end I had a lumpectomy with just the known area removed and am very happy with how it all turned out but it was all really horrible at the time. My surgeon even apologised for what I’d been through which I appreciated.
Hang tight. All of what you are experiencing at the moment is so you can have the right surgery for your circumstances. I know it’s horrible, but you will get there eventually. x
@joy3 I also had lobular cancer and my initial results and then MRI results took several weeks to come back/ be discussed etc. Then I had a sentinel lymph node biopsy, and then there was a long wait for a mastectomy and DIEP reconstruction slot.. the surgery would have been during my kids’ GCSE’s and A levels, so with my team’s agreement, I decided to delay it a further month myself (call me crazy). Diagnosis to surgery for my multifocal grade 2 ILC (6.5cm overall) was just over 5 months. Histology results showed no growth or spread during that time. Lobular tends to be a slower growing type, so if your surgeon isn’t concerned, I’d do my best to trust her. Easier said than done I know! The best of luck with it all and fingers crossed your latest results are positive. Sending hugs xxx
A huge thank you to both lovely ladies for your kind words and forsharing your stories with me. You’ve given me the confidence to hold my nerve and trust my surgeon’s advice. I’ve decided to wait for the pathology results. The surgeon has juggled some patients so I now only have to wait one more week for surgery (assuming of course the pathology is back by next week).
After coming this far, another week or two won’t make a difference my lovely, however excruciating the wait feels right now.
This stage of the process is so difficult, as anyone on this forum will attest to.
As @southwest123 says, hang in there - you’ll receive the most appropriate treatment this way and eventually a plan will be in place and you’ll feel significantly more at peace.
Please let us know how you get on xx
Dear joy3 - sounds like you are in the hardest time right now. Waiting, more tests, waiting. Not to mention the physical and mental intrusion of the tests themselves. I was 3 months from diagnosis to surgery which felt like a lifetime. Additional MRI/biopsy to chase down suspected cancer in the other breast. I did not, however, have surgeries cancelled like you and can’t imagine how devastatating that must be. It was not so much the concern about the cancer growing (I knew it was slow) but the anxiety over waiting, the endless phone calls, the recalls, having no plan, etc. Two years on from that I’m kind of glad the extra testing and wait happened then because they ruled out anymore nastiness. So the original plan - lumpectomy and SLNB - proceeded as initially planned. I hope you can breathe / stay focused (or distracted!) as much as possible and you will get throught his. It’s the hardest time, no doubt. Good luck
Hi Birdlife,
Yes, the being in limbo is the worst. But I know that in the long run it’s to ensure the best treatment is given.
Many thanks for your kind words. I’m so glad I decided to share my journey so far as it’s been a really positive experience hearing other people’s stories x
I’m so sorry, 4 months must feel like a lifetime, when every waking moment ( and I know there won’t be much sleep going on) is spent thinking about cancer.
Its always a bit easier to manage once the treatment plan is confirmed and underway, so I can totally relate.
I was diagnosed with grade 2 ILC , 2 years ago and initially booked in for a lumpectomy within 4 weeks.
But like you a sneaky further area was spotted deeper on the MRI and treatment plan changed to mastectomy.
However I delayed the surgery to give myself more time to consider reconstruction options, and was also reassured that the delay was negligable and the cancer was slow growing.
I did feel terribly conflicted at the time , but with hindsight it was the right decision, and meant I had more options open to me further down the line, than had I gone for the immediate mastectomy without reconstruction that I was being offered within a week of finding out that lumpectomy was no longer on the table.
It also gave me time to mentally process the change in treatment plan and the impact it would have on my life.
It sounds like you are unfortunately receiving longer waits for biopsy results than I did which must make it incredibly hard. But my surgeon said even my 2 small areas of ILC ( 11mm and 6 mm) had probably been growing slowly over several years.
I totally agree with other survivors comments having waited this long, a few more weeks is not going to change your diagnosis, but it will give you clarity and ability to choose the right treatment plan for YOU.
I wish you all the best in your journey and sending you a big but very gentle hug!
Ps: 2 years later life is unrecognisable from where you are now
So the biopsy results are back at last. They show benign micro calcifications which needs to be removed along with the malignant area. This can be done by lumpectomy+ radiotherapy, or by mastectomy. I asked which they would recommend and was told that they make no recommendations - I have to make the decision. Now I consider myself to be fairly intelligent and I have a science background, but how am I supposed to make such a decision? I’d expected some guidance from my healthcare team.
