Pial carcinomatosis, anyone?

Elsa101

Hi,

I have never been so scared in my life.

After a fairly standard bout of BC (tumor 5x5 cm, ER+, PR+, Her2neg, Ki67 of around 40% and no nodes involved) where everyone kept telling me that this would be all right and 9 out of 10 do well with breast cancer, I kept getting these itchy eyes. Especially the right one. Originally suspected to stem from hyperthyriodism after radiation, it quickly became clear that they had nothing to do with my thyroid, and the itchy eye turned into a headache turned into a rubbery-numb-sensation all over the right side of my face.

I spoke of this to my oncologist on my one year check up, and she promptly ordered an MRI. The MRI came back unclear, but with "possible pial carcinomatosis" at two different places. There's no way of knowing until we have a second MRI done for comparison. In the meantime, the symptoms have worsened. There's really no way that this is a normal reaction of some sort, something is wrong with my head and I know it. It's funny, in August I was jogging three times a week and was looking forward to getting in shape after treatment… and now I can't walk up the stairs without almost fainting.

I guess what scares me the most is to hear the doctors say "Well, this is is an impossible diagnosis, you are already dead, let's just keep you comfortable until you go". If I were just me, I could have stomached it in some way… but I have 7 children, 4 of them really young. I can wrap up my life in a year or two, and get things in order but… a few weeks is just not enough.

Please tell me there is hope. "Hope" as in "I may have a year or two to settle things". It is really all that I hope for right now.

Piggy99

Elsa, I am so sorry you find yourself in such a place of terror and uncertainty, and I am hoping that your doctors are moving aggressively to find what's really going on with your symptoms. Pial carcinomatosis is a fancy term for leptomeningeal metastasis, and as you correctly suspect, it's not good news. However, several inflammatory diseases like lupus, Sjogren's syndrome and others can present with similar looking lesions, and there's a possibility that what the MRI is seeing is not cancer. The most common test (that I am not seeing in your post) is a lumbar puncture to check for the presence of cancer in the CSF (cerebrospinal fluid) and to check whether there is increased intracranial pressure. While a negative result does not rule out leptomeningeal mets, a positive test is a quick way to get a confirmation and move from diagnosis to treatment. If the test is positive, it may also be possible to determine the ER/PR/HER2 status in order to determine the best treatment moving forward.

With regards to hope, I know of at least two members of BCO, Ihopeg and mandymoo that have survived longer than a year with leptomeningeal mets and seem to still be around. Mandymoo is about 8 years out. There are no guarantees, but there's always hope. Hugs and best of luck!

KBeee

I am sorry you are having these scary symptoms. Piggy99 gave great feedback and I don't have too much to add other than I would be on your docs ASAP about getting confirmatory tests scheduled and start calls to get a second opinion. That way no matter what it turns out to be, you have people lined up to address it. Hoping these symptoms are unrelated to cancer and turn out to be something else.

Elsa101

Piggy99 and KBeee, thank you so much for your kind words and advice.

I guess I am still in a bit of a shock after having this surprise diagnosis thrown at me after a year of "This will be ok, 9 out of 10 survive breast cancer and soon life will return to normal". I had even made my peace with the fear of recurrence or metastatic disease, thinking that if the cancer returned there would still be treatment available that could work for years and years. "Sorry, but you may only have a few weeks left" wasn't even on my radar, I had no idea this condition even existed. It makes sense though, that it was never brought up by the doctors, seeing that it is such a rare condition especially in patients that are seemingly NED. So I don't blame them for not telling me, I can understand why they don't mention every single scary possibility to all patients, it would make people worry unnecessarily in most cases.

They did a lumbar puncture as well, but I was under the impression that they did so mostly to look for other explanations, as the test is so unreliable for cancer cells. So far all results (viruses and such) have come back negative, but they are not done analyzing yet. My oncologist is supposed to call me on Wednesday to give me the results, hear how I am doing and schedule the next MRI if my head is still funny (it is... and progressively so. This is what worries me the most. Maybe I will call her on Monday to let her know).

So I suppose I must prepare for the worst, but hope for the best. There are many other likely or unlikely explanations, and until I get the definitive result there is no use in driving myself mad with worry. Easier said than done, but I'll try.

Thank you again for your helpful replies. And while I realize that the stats are still very bad it helps to hear of success stories! Thank you! It makes me think it's worth putting up a fight to try everything available, even if the doctors are skeptical. I live in a tiny corner of Northern Europe, and while the care for regular breast cancer is excellent it is extra nerve wrecking to be a "rare case with bad prognosis" when there are likely very few like you around. Not easy to get a second opinion either. But maybe I am worrying for no reason, and they all rally to get the best treatment *if* it turns out to be LM.

Wishing you both a lovely weekend! I'll try to enjoy it as much as I can, and squeeze my kids extra tight

Elsa101

So I just got a letter summoning me for a follow-up MRI on the 28th. Two weeks away! I did not call the oncologist today as she will call me on Wednesday anyway (and I am ridiculously scared of being "that pain in the arse-patient"), but when we talk I'll casually mention that I am seriously concerned my head will indeed explode before said MRI appointment

My main focus now is to keep myself as busy as I can, and to cling to the thought that LM in NED patients is so very rare. It just can't be! There must be another explanation as to why my head and body are acting up. Fingers crossed, and much love to anyone who stumbles over my incoherent babbling. May you have a great day

KBeee

Do keep us posted! In the meantime, if there are places you could travel to if a second opinion is needed, start researching those. Also, when you speak with the doctor, ask why the wait is 2 weeks, and if he/she thinks that will impact anything. That may help gauge what the docs are thinking.