pertinieum nodule

[marianne88]

hi ladies. So I have stage 4 lobular and they just found a small nodule in my pertinieum and I’m just wondering if anyone else has this and how are you doing? Any side effects. I just had Ct and bone scan and it showed up. Doctor at Dana Farber in Boston doesn’t want to change meds yet. Just seeing if anyone else has these issues. Thanks so much!!! Marianne

[Bettybuckets]

Hi Marianne, you are not alone and many here like me have stage 4 lobular that has gone to that area. Me too…at first they were seeing what they called thickening and then they finally noticed that the liver was involved and looking back it had been for a year… they could see it from scans last year… but appear see through… so last Xmas we made a switch from the the 2 different cdk46 I had been on to xeloda… and things improved… markers went down and scans saw improvement and the best part of being back xeloda my belly feeling of fullness improved and no fatigue…. But I did have to weigh thst against the HFS which meant I could not walk far with out sore puffy feet. So I just turned my energy into lap swimming and biking and then didn’t feel badly when I had to blob out at home and ask my hubby to get things upstairs for me etc… I’m hopeful that I can keep on this.. I’m treated at the BI with my 2nd opinion at DFCI. They did just suggest I cut back the dose after getting Covid shot and my feet got a bit more edematous and sore. The drug shouted seem to be similar for lobular vs ductal but for us with lobular, our cancer behaves differently and often goes to stomach lining… and other belly areas. But we can’t worry too much- just pray each treatment helps and that you get a good run on it. I hope this helped!

[Kerryd22]

I’m not lobular but my last two scans focussed on a mesenteric nodule which showed a significant increase so the radiologist wanted a follow up scan within 12 weeks. That scan showed the module had calmed down and was half the size it had been so I stayed on Exemestane.

I can understand why your oncologist didn’t want to make an immediate change just as mine didn’t. There’s changes all the time even though I’m considered stable. According to a video someone posted here progression is 30% increase between scans or movement into entirely new areas.

A small difference in one nodule doesn’t really qualify. I’ve got bone Mets literally from head to toe but the changes are slow. In the first year they weren’t and so I had Abraxane but since then any changes are relatively small. The breast tumour is small enough now to be invisible whereas in the first few months it doubled in size.

If your doctor says it’s ok then it’s okay. That’s my philosophy anyway!

All the best

Kerry

[NPmary]

When first diagnosed I had many nodules lungs, chest abdomen, treatment continued and nodules resolved.