Forum Discussion
The outlier
Hi all, I’m back again. In feb this year they found a new tumour which at the time they thought was a bit they had missed from my lumpectomy but now they are thinking is a very early recurrence (2 months post finishing herceptin). Last week I noticed some discolouration on my breast near my nipple which they biopsied and found it was the cancer on the move and had come in to my skin via the lymphatic system (despite being on chemo). The last week has been the usual whirl of staging scans which have all shown it contained to the breast still. Yesterday I had a mastectomy where they also took a large amount of skin and pulled up my stomach skin to cover the gap and they did an auxiliary clearance. I’m feeling terrified of what is to come and it’s not helping that the drs seem genuinely worried too and say things like “I’ve never seen cancer move this fast” and the like. They have all said that there is hope that they have got it all now but I feel like that’s a pretty small hope. I’m scared and sad and I feel like I don’t fit in anywhere for support. I’m not early breast cancer, I’m not a survivor and I’m not yet metastatic. But I’m scared I could be dead within months the way things are going. I’m her2+ er- and have been on herceptin, perjeta and taxol but I’m guessing that’s changing soon. I get the results from pathology next Thursday and I guess they make a plan from there depending on what they find but it all feels pretty hopeless. Some days I find I can feel calm and ok and other days I just cry which feels like a waste if I haven’t got many days left. I just want some better luck to come my way and I’m tired of being the outlier.
18 Replies
- Wow, great news @Lythe! I can feel the change in you from my phone screen 😆😁. I’m so glad you’ve chosen option 1, bc you are cancer free, and your body is so much stronger than you realise. You sound much more confident and happier, it’s good to read 😊🥰
- I saw the oncologist yesterday amd I think I understand their reasoning in sticking with the same treatment (minus the chemo part). Firstly, hopefully I am cancer free and any treatment is as an insurance policy. Secondly, my current treatment (herceptin and perjeta) is the best insurance policy at the moment because it has been at least slowing down growth and has relatively few side effects. If we stop it now and go to TDM1, I may not tolerate TDM1 as well and I can’t go back on herceptin and perjeta if we change our mind. And she doesn’t think TDM1 will necessarily control the cancer any better than the other stuff anyway. Personally, I’m going for option 1 and that I am cancer free and my body is healthy. Thank you everyone for your support. It’s been so good during this crappy few weeks. @Halla I asked if it was residual disease or an early recurrence and she said we don’t know and will probably never know.
- Clear margins!!!! @lythe 👌🏻👏🏻👏🏻👏🏻👏🏻 & No lymph nodes - that’s great!! Does that mean it was from leftover cells not a new cancer? That sounds like good news too!
- That’s certainly good news @Lythe! Make sure to ask your oncologist about the proposed treatment and all the whys, especially since they initially said it’s resistant to it. If they say it’s just for good measure, be skeptical. Sometimes it does more bad than good. Not knowing what to do shouldn’t mean just doing what is standard as that can be very harmful, especially long term.
Good luck 🍀♥️😘 - Terrific @lythe. That sounds SO good .... I hope you can get out & celebrate appropriately (if you are up to it!)
Take care & all the best for your Onc appointment xx - Just thought I would update. The surgery results came in on Thursday and they got clear margins. There were 5 focal points ranging in size from 1mm to 15mm growing out of an area of treatment effect. It was also in the nipple and skin around but doesn’t seem too widespread. All of the 11 lymph nodes taken were clear. So from a surgical perspective it was about as good as it could be. The surgeon said her 3 things she was most concerned about looked good (being the tumour being attached to the chest wall, extensive skin invasion and lymph nodes). It was weird in the appointment because while they were saying things looked good it always sounded like they were about to say “but….”. But the but never came. I’m seeing the oncologist on Wednesday to find out what their plan is. So far it sounds like she is planning on doing more of the same which doesn’t make sense to me as they have said it was treatment resistant. I guess I will find out the details on Wednesday.
- Hi @Lythe, haven't been on here for a while but reading your post just made me want to send the biggest virtual hug to you. Not much that I can add that others haven't said but just know everyone is here for you.
Michele xx - I have a McGrath nurse who I haven’t been able to get hold of with this latest scare who is great. And the breast care nurses at the hospital have been good it’s just that it’s such a short period of time you get to see anyone. I’ve been referred to a psychiatrist but that got a little delayed due to some paperwork issues but hopefully that will come up soonish. It just gets overwhelming especially as it feels like I’m no longer following the ‘normal’ ca path anymore. Last year I took great comfort in statistics and statistically speaking, I looked like I did great! Now it’s all even more uncertain. But I have gotten a lot of comfort from everyone’s messages and I’ve been distracting myself with my kids and also getting in some meditation to calm that monkey mind.
- You are in my thoughts @Lythe, and I'm keeping everything crossed for you. You are not an outlier. I hope the trained staff at BCNA get in touch ASAP. Do you have a Breast Care Nurse or McGrath Nurse? Sometimes you have to self-refer, if your oncologist or surgeon have not done so. Big hug. xxx
- Sending you a BIG cyber hug, Our thoughts are with you. 💖💖💖💖
