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Posts (310)

Tue, Jan 7 2:01pm · The math of invasive breast cancer risk for LCIS in Breast Cancer

I was diagnosed with LCIS six years ago and Invasive Lobular Cancer four years ago. I had a lumpectomy with the LCIS and then a bi lateral mastectomy with the invasive four years ago. I have tried all the drugs and have had significant side effects, so I was unable to take them all, starting with Tamoxifen and trying Letrozole and Arimidex. I chose the bi lateral mastectomy because my LCIS was in my left breast and the invasive was in the right. I'm hopeful that will reduce my risk but the statistics don't always show that these days. I did not have to do radiation or chemo as my nodes were clear. I was 56 years old when I had the bi lateral. I was post menopausal. Thought I'd share that to go with the stats above.

Just this past November I had a scare with cellulitis from my lymphedema (with only one node removed in surgery, unlucky I guess) and it moved quickly to sepsis. I am recovering from that mess now AND while in recovery….my Mom, who is 83 was diagnosed with DCIS (Ductal Carcinoma in Situ)….I was the first person in my family for generations to have breast cancer, so I wouldn't think there was any genetic connection but now with my Mom (?)….however hers is ductal. My sister did die of lung cancer however about 9 years ago. I believe cancer is sometimes linked to family/genetics but more likely to environment and I think ours is consistently more polluted (but I have no real scientific basis for that).

Hugs to all

Sun, Jan 5 10:23pm · LCIS: should I take Tamoxifen? in Breast Cancer

@nycoceans Sorry to hear about your diagnosis but it sounds like you have a good follow up and treatment plan. Six years ago I was diagnosed with LCIS and four years ago I was diagnosed with invasive lobular cancer. Here's the good news……with a follow up plan similar to yours I found the invasive Lobular at Stage 1, with no spread to my lymph nodes. I wasn't able to take Tamoxifen due to side effects and I guess I'll never know if taking the meds would have stopped the invasive cancer but I was able to find my cancer before it was much worse, with a lot of diligence on my part and my doctors. The decision you face is a very tough one and I know I worried a great deal about whether to take the drugs and also that I wasn't able to do so. The side effects can be significant for some and it's a tough road deciding what will be best for you. My doctors were helpful in steering me in the direction of lifestyle changes such as diet, losing some extra weight, and supplements in lieu of the meds.

The first drug recommended was the Tamoxifen with LCIS and later when I was post menopausal the AI drugs. I couldn't tolerate any of them….well, my doctors gave up at 3 of 4 of the available drugs…so I have never had the advantage of the meds, but I am four years out now and my last checkup in December shows no sign of the cancer coming back.

True, it's harder to find Lobular and it behaves a little different than Ductal. Whether you take the meds or not, make sure you are diligent about screening and don't hesitate to ask for tests like ultrasounds (which found my lobular) or MRI's. You'll feel better and you'll have a much better chance of catching more LCIS or invasive IF……IF……IF……it comes back. (I hope it doesn't….I hope you're on the statistics that show a one time event).

Sat, Jan 4 7:40pm · Treatment for chronic epstein barr in Infectious Diseases

Once I had EBV (later in life in my 50's) I have had lower immunity and more fatigue than I had previously. I did see where there are several doctors getting close to a vaccine for EBV, which would be great. For those replying here…..have doctors ruled out Guillan Barre syndrome (I'm sure my spelling is off). My brother in law had EBV a couple of times and then developed the much more debilitating Guillan Barre. It can be acute and chronic and very difficult to manage. EBV can also cause several cancers. I hope they find more help and information on EBV and a vaccine soon. Hugs

Dec 27, 2019 · anastrozole and dry eyes in Breast Cancer

@emily12 Hello fellow potato chip………You might try the Xiidra? I'm on it now but it makes my eyes feel worse, so I'm going back to Restassis. Another possibility perhaps. I can't use any of the AI drugs so I completely understand. I tried 3 of 4 of them, I would ask your doctor to give you another one to see if it's less problem. Hugs

Dec 21, 2019 · anastrozole and dry eyes in Breast Cancer

@emily12 Hello………..I was diagnosed with 'dry eye' as I was in perimenopause and it was awful. I wasn't able to tolerate the AI drugs (none of them) due to other side effects but maybe they cause the dry eye you are experiencing. My dry eye was due to the drop in estrogen and the AI's reduce those hormones. My eye doctor diagnosed it and I use Restasis prescription eyedrops and they really help. There is a second eye drop now too, Xiidra that accomplishes the same thing. It really turned it around and now I use those drops, over the country drops and also Omega Vitamin Chews. I was told that Omega would help with the condition as well. You might add an Omega over the counter supplement and see your eye doctor for a check?

I've found now that I have such extremely low levels of estrogen (good for the breast cancer, bad for everything else it seems) that I also have dry mouth and use biotine and unfortunately have vaginal atrophy and must use a prescription estrogen cream (carefully) now as well. Just dry like the Sahara desert I guess.
Hugs and good luck with the eyes…..

Cindy B.

Dec 20, 2019 · Concerned about the side effects of anastrozole in Breast Cancer

Glad you're getting that help @trixie1313 ……..Since my swelling had completely stopped I was only doing the minimum and not being as careful as I should have. Cautionary tale……add lymphedema management to daily chores!!

Dec 20, 2019 · Concerned about the side effects of anastrozole in Breast Cancer

Lymphedema Update – I've been having 'words' with my breast surgeon department regarding this lymphedema issue and I can report a 'win'. They offer no lymphedema treatment presently (it was cut) but as of today they offered me an outside referral to get treatment that will be covered by my insurance. My nature is to be cooperative and pleasant but sometimes you have to push to get attention and change. The doctor group even said they have 'learned so much from my experience' and they agree that more should be addressed for women moving forward. I hesitate to kick up a fuss but I'm pleased to say this time it has made a positive change for me and I hope will help women to follow. Now on to the hard work of figuring out how to manage this and never go back to the hospital with sepsis again…….but first, I'm going to make some Merry Christmas here at my house!! Hugs to all.