DCIS Measurements and fatigue

I'm confused by your path report too. Is the measurement the size of the area they were looking at or the size of the tumor? I suspect it was the entire size of the area in question. I had DCIS too but the stereotactic biopsy only took 12 small samples. I didn't have anywhere close to the same extent of biopsy you had. After the mastectomy the pathology report looks like yours & shows 3 measurements for each piece of tissue submitted to them for examination. It also says tumors were found in two areas of DCIS with the largest tumor 1.8 cm.

The pain in your breast is to be expected after what you've been through. How long since you've had a blood test? Sounds like you could have either mononucleosis, anemia or more likely, a thyroid imbalance. I have had all three. The anemia doesn't bother me but the low thyroid makes you so tired it's an effort to walk across the room some days. The mono wouldn't last so long and it is so miserable you would have gone to a doctor by now. I went to the ER because I felt so bad. You cannot even stand up without sinking to the floor.

Keep in touch. Good luck.

Mermaid, sounds like you've got a lot going on. Sounds like you are headed to mx. When do you get the brca results?

It's good that you advocated for yourself. Have you had an MRI, to help decifer what might be going on in the other areas? If you are sure you're doing mx, you might not need it, but just a thought.

Hi Mermaid,

I hope you've seen your surgeon by now and have a plan in place. Sorry that you are going through this.

First, I want to reassure you that it is possible to have a large amount of pure DCIS. I had over 10 cm taken out and two second opinions from Dr. Lagios & MD Anderson (plus the initial pathology) found no evidence of invasion. Second, I know noninvasive cancer is supposed to generally be asymptomatic, but I had fatigue and pain (from what were supposedly cysts) six months before diagnosis. Like you, I had my full blood work done and they couldn't find anything, not even bad cholesterol. Since my MX, I've tried to get back into "fighting condition," e.g., exercise, sleep, extra-healthy diet (kale, kale, kale), etc., even if it is sometimes an illusory goal.

Who knows what the precise mechanisms of disease are? It could be the cancer thrives in an environment where one's immune system is already suppressed; it could be the cancer is the primary cause of the fatigue; or some interaction thereof. I'm still scared that someone missed the proverbial invasive needle in the haystack, but I'm hoping (knock on wood) for the best...for both of us!! You are smart to continue to follow up w/ your doctors about these other symptoms.

Anyhow, keep on advocating for yourself and asking as many questions as you have to in order to feel assured that your treatment is on the right course.

Please update on how you are doing when you are able.

Best,

Deb

mermaid, HER2 testing isn't always done on DCIS. Whatever the result, there is no change in the treatment plan. The role of HER2 is well understood for invasive cancer (HER2+ invasive cancer is very aggressive) but there have been many studies done on HER2 DCIS and the results have been all over the map. Some show that HER2+ DCIS is more aggressive however most of the studies show no difference in aggressiveness (i.e. likelihood to find invasive cancer or to develop into an invasive recurrence) and some of the studies have actually found that HER2+ DCIS is less aggressive. Netting it all out, they just don't know. Add to that the fact that the drug used to treat HER2+ IDC (Herceptin) is not approved for DCIS. There have been a couple of clinical trials with abbreviated usage of Herceptin (with it's side effects, the full dosage used for invasive cancer patients would never be given to someone with DCIS) but that's it.

As for the size of the area of DCIS and the risk that some invasive cancer will be found, as deb said, it's certainly possible to have large amounts of DCIS and no invasive cancer. I've seen many women come through here with that type of diagnosis. However, should one or two tiny microinvasions of IDC be found, that may not change much at all about your treatment plan and it will barely change your prognosis. I say that as someone who had over 7cm of high grade DCIS with comedonecrosis, and a 1mm microinvasion of IDC (found during my excisional biopsy). The microinvasion meant that my nodes needed to be checked (an SNB is optional with DCIS) - there is approx. a 10% risk of finding nodal involvement even if the amount of invasive cancer is as small as a microinvasion. But once my nodes were found to be clear, nothing else in my treatment plan changed. So I am Stage I with DCIS-Mi instead of Stage 0 with pure DCIS, and I do have a very small (only about 1%) risk of mets because of that tiny microinvasion, but other than that, nothing changed. I'm small breasted so I had to have the MX in order to remove all that DCIS (I had a single MX) but with my oncologist's agreement, I opted out of Tamoxifen (which would have been given mostly as protection for my remaining breast). The MX was my only treatment. That was almost 8 years ago and I've been just fine.

Of course, if more than a microinvasion or two is found, that could change things quite a bit more. But that only happens in about 5% of cases where DCIS is the initial diagnosis from the needle biopsy.

Good luck to you both with your upcoming surgeries!

I'd suggest that you not get advice on breast cancer from a GYN. Let's just say that their area of expertise is a bit lower down in the body.

DCIS cannot recur in the other breast. DCIS cells are completely confined to the milk ducts, which means that they can't travel anywhere outside of the breast that they are in. Even invasive cancer, which can enter the lymphatic system or the vascular system, very rarely recurs in the other breast. Invasive cancer cells that leave the breast are more likely to travel to the bones or the liver than to the other breast.

What can happen is that you can develop breast cancer again, in either breast. We are women, and as long as we have breasts, we can develop breast cancer. And unfortunately, even if we don't have breasts, we can still develop breast cancer. A bilateral mastectomy significantly lowers the risk, but after a MX there is always some breast tissue left, and breast cancer can still develop. There is only a 1% or 2% chance of this happening, but if you read this board, you will unfortunately find a number of women who've had that experience.

Having had breast cancer one time, all of us are somewhat higher risk (than the average woman) to be diagnosed again. But a 30% risk? It all depends on what other risk factors you might have, in addition to this diagnosis of DCIS. I was 49 when I was diagnosed, I have some family history of breast cancer, and my oncologist estimated that my risk to be diagnosed again was about double that of the average woman my age. The average 49 year old has an 11% risk, so that put my risk at 22%. That 22% was what's called my 'remaining lifetime' risk, i.e. the 22% risk was spread out over the rest of my life, approx. 41 years (these estimates are usually done to the age of 90). So it averaged to just over 0.5% (a 1/2 a percent) per year. I've seen other women come to this board who've been given similar future risk estimates by their oncologists; others have been given higher risk numbers and some have been given lower risk numbers. For me, because I am 8 years older now and have 8 fewer years left in my 'remaining lifetime', my risk today is about 18%. Again, that's double the risk of the average woman my age.

I'd suggest that an oncologist is a better doctor to talk to about your future risk level, rather than a GYN.

All of this isn't to suggest that a BMX isn't the right decision for you. It sounds like a MX is medically necessary, because you don't have clean margins after the excisional biopsy. That's the same situation that I was in - I had two large areas of DCIS removed during my excisional biopsy, and I don't think there was a single clean margin anywhere. So I needed to have more surgery and it was pretty clear that a re-excision lumpectomy wasn't going to leave me with any breast left. So a MX it was. I opted for a single MX; that was the right choice for me. A BMX might be the right choice for you. Just be sure that you make this decision with accurate information and knowing what's involved. To be honest, I find it a bit disingenuous of your GYN to say that he would have the BMX if it was him. Maybe the better question to him is whether he would have more prostate surgery than medically necessary, in order to cut his future risk. Or if he had testicular cancer, would he choose to remove both testicles rather than just the one affected? Your GYN doesn't have to live with the results of your BMX, which include the loss of sensation and natural feeling. You have to live with that. If you know what you are getting into and a BMX is what you want to do, great! But make the decision based on what's right for you, not based on what someone else (who isn't affected and who can't possibly know what it would be like) says.

My DCIS was very wide spread, measuring 15 cm (I was a DD). I had a BMX, and there was no signs of micro-invasion or IDC. After surgery , I was considered NED - and no further treatment has been needed. I was very worried that they would find more during/after the surgery because of how widespread the DCIS was, but they did not. Good luck to you!

DCIS doesn't usually present as a lump so why do you think this is DCIS?

There's no way to know anything until you see your doctor, but it seems much more likely that all of this is related to the surgery.