DCIS Infection MRI now further testing for re-occurrence

Thistoshallpass

just simple DCIS...... DM Dec 2013 and pathology came back with cancer still behind nipple, finally decided to remove nipple Dec 2014 and have some revision for ripples

CC started in June 2015... I can live with this and wait until 2016.... I don't want any surgery in 2015 I will get nipple reconstruction in 2016 and deal with CC in both breast. left "cancer" breast got infected.... draining from incision site nasty pus 9 months after last surgery.... infection was so bad had to remove implant and now wait 6 months to start over for expanders then replace that implant and correct right breast from CC which has gotten worse. Felt lumps, can see enlarged rib and have pain requested an MRI Dr finally agreed and now that test says... need further testing they can not rule out re-occurrence so more testing..... terrific just plain terrific.... so wanted everything to be over. scared about the outcome hate mirrors now.... prosthetic boob almost ok with clothes but CC is moving bra out of place. but it is also what I KNOW is not there. regardless of clothes... what I have to see everyday. HATE it..... oh yeah happy on the surface... live with the motto someone has it so much worse but doesn't change how I feel about me. Others give the replies.... "we don't care about that we are just glad we still have you" while I know they mean it and I truly love them for it and plain just love them anyway..... it does not change this feeling. Other advice/opinions "you don't need them..... don't worry about replacing it" it is gross..... I have one misshaped hard breast and one gone..... find myself crying out of the blue. Hear commercials about cancer programs 1 morning heard 3 in a row about different places..... oh joy try to find happy things to take mind off it but it is always there. My boyfriend and our dog and my 83 yr old Mom (with dementia that I look after while she is still in her own home) I love all of them beyond words & down deep in my soul and have the most amazing friends ever.... although Not many know about this latest situation not sure if sharing more would help. I go to support group to try and help. I am not sure what is around the next corner after next test results. I pray for all of you going through any of this..... God Bless

farmerlucy

What a struggle. Just one of the unpleasant things going on in your life would overwhelm many. I hope your further testing comes out completely clear. Docs are epecpecially careful with us so resist the urge to "go there". DH and I are primary caregivers for his dad who has dementia. Hard, to say the least. I'm sorry your recon has been so rough. I'm sending you good vibes for peace of mind. Be gentle with yourself. You are enough.

Thistoshallpass

Farmerlucy thank you so much!! I am normally the glass is overflowing.... but there are days I feel drained and my rose colored glasses are fogged up. I want to try to think it will be nothing, but then I go back to original diagnosis and thought they were wrong then.... I lost that bet. I am not a gambler any way... small lottery every now and then is enough gambling for me. Can't imagine they put in the report.... can not be certain there is not a re-occurrence. I feel like they know and that is why they send for testing to confirm what they know. I wonder what % of first reports are what they "think" it is..... you are right honey.... I TRY not to go there and way to busy to do so most of the time but evenings I kinda get stuck.... need to unstick myself and get busy I have tons today to get ready for Christmas. Not sure what DH is (darling husband) LOL but his Dad has dementia so you understand that heart break and it varies day to day. Even though she has seen my breast and the awful looks right now she does not grasp what has happen I don't try to explain that or many other things.... I don't want to give her something to worry about..... but mostly I don't want to tell her things because she gets frustrated that she doesn't understand.

I hope things are going well with you and your healing, and appreciate your vibes.

bevin

Gosh I am sorry. This is such a stuggle and I wish things were easier for you.  Hoping your tesy results are negative. On finding a good support group can you sstart w your MO office or local cancer center? They should have referrals . Keep us posyed.

Thistoshallpass

Cancer My Story (some is a repeat of what is in the start of my post here but I typed it all up in a word doc to help me keep track of thoughts and share research findings)

Somewhat a long complicated story, that was suppose to be a simple diagnoses of early detection through Mammo & Sonogram. Mammo always came back suspicious so they followed it up with a sonogram. In July 2013 DCIS was reported. Aug 2013 Bilateral Mastectomy. Cancer still seen in pathology behind left nipple finally gave in Dec 2014 and had it removed and some revision on reconstruction. Waited for things to settle before reconstruction and trying to decide about gambling the reoccurrence of the breast cancer because my Doctors opinion was the odds of cancer seen behind the nipple was very low 1% maybe. I don't gamble with money so why am I going to risk losing a bet that I had already lost with even getting DCIS.

After nipple removed I was going to take 2015 off and no surgeries. Replace nipple in 2016 but Capsular Contracture aka CC started in both breast. June 2015 continue to get worse in the left breast by Sept 2015 I had to have emergency surgery and have the implant removed because it was so badly infected. Infection was draining from the incision site and breast had several dark red spots. The treatment plan was to let it clear up for 6 months and then put in the horrible and dreaded expanders, approx. 3 months after that then remove the right implant and clean up CC and put in 2 new implants. Start from scratch.

Here it is 3 months later Dec 2015 I had to request an MRI of both breast because of lumps I felt and doctor reluctantly agreed, those results came back that I need further testing on left breast area where I have NOTHING to see if cancer has returned. While waiting on that test the right breast is now infected. Saw it coming on with the redness & lab results show WBC numbers were higher. I had labs done because I suspected the infection and needed it for upcoming oncology appt. went to Dr and he put me on the antibiotics but not seeing any improvement. Actually, causing other female discomfort that normally goes along with using antibiotics that I felt after taking the 1^st pill.

Tomorrow I go for Ultrasound with Biopsy on both sides now that it is infected otherwise it would have only been the left side. Doing some of my own research because I KNOW Doctors do not have all of the answers but if anything I can help provide them with information I find in the research I do than I have to help my own cause. There are so many unknowns and then I find this link http://center4research.org/medical-care-for-adults/breast-implants-and-other-cosmetic-procedures/breast-implants-and-cancer-of-the-immune-system/

That includes the following info along with much more ... yellow highlight are some of the key things I noticed.

Most women were diagnosed with implant-associated ALCL by testing the fluid that collects around the implant, called a seroma.⁴ Seroma is a potential complication of breast implants and is usually not caused by ALCL. It is important to note that even when ALCL is in the breast, it is not breast cancer, but rather a cancer of the immune system. Most breast implant-associated ALCL are called "effusions", because the cancer cells are within the fluid which has collected inside the scar capsule. Women with ALCL in the scar tissue surrounding the breast can be treated by removing the implant and the surrounding scar tissue. This surgery is known as a capsulectomy.

Although there have been few studies of ALCL among women with breast implants, one clinical follow-up of nine women who had a capsulectomy after being diagnosed with breast implant-associated ALCL found that all nine were healthy and disease free when they were studied 3.5 years later, and no chemotherapy or radiation treatment was necessary.⁵ However, there have been case studies reported of women with breast implants who went to their doctors because their breasts were swollen, and the doctors found a tumor near the breast implants. These women with tumors had a more aggressive form of ALCL that recurred after a capsulectomy and needed to be treated with chemotherapy or radiation.⁵ Although earlier studies reported shorter-term results, a recent long-term follow-up of 60 patients with breast implant-associated ALCL showed that the ALCL was more likely to be fatal for women who had a solid ALCL tumor than for women who had ALCL effusions (cancer cells in the surrounding fluid).⁶ All of the patients with effusion-type ALCL were still alive 5 years after their diagnosis, compared to only 75% of the patients with solid ALCL tumors. The effusion-type ALCL tumors were also less likely to recur after treatment, returning in only 14% of patients, compared to 50% recurrence ofsolid ALCL tumors.⁶Longer studies with more patients are needed to determine the best treatments for both types of breast implant-associated ALCL.

So far, there are not enough data to show if there is more risk for ALCL among women with silicone gel implants compared to saline implants or for women who get implants for reconstruction rather than augmentation purposes.²Since it is impossible at this time to tell which women are most at risk for ALCL, it is crucial for women with all types of implants to have routine follow-ups. For women with silicone implants, FDA recommends getting a breast coil MRI three years after getting silicone gel implants, and every two years after that.⁷ Women with saline implants should have regular clinical breast exams by an OB/GYN or other physician.

Implant companies and plastic surgeons have been quick to dismiss the FDA's findings, as they have with most claims about the safety of implants. A statement on ALCL from Allergan, a manufacturer of both silicone and saline breast implants, said, "A woman is more likely to be struck by lightning than to get this condition."⁸ Four hundred people are injured or killed by lightning every year.⁹ ALCL may strike fewer women but it is an avoidable risk that most of us would choose to steer clear of, just as we do not go swimming during a thunderstorm. In addition, it is possible that there may be more cases of ALCL than have been reported. It is not standard practice to examine the scar capsule after a woman has had her breast implants removed, and it is possible that among the many women who get their implants removed every year, some have slow-growing ALCL in the scar capsule that they were not aware of.⁵The FDA is in the process of establishing a registry to monitor the number of breast implant-associated ALCL cases and plans to continue studying the link between breast implants and ALCL. While the risk of ALCL appears to be very small, many women would not want to take the chance of developing cancer as a result of breast implants. In addition, the link between breast implants and autoimmune diseases has been hotly debated for two decades, and the evidence regarding ALCL once again raises questions about the possible impact of breast implants on autoimmune disease or symptoms such as joint pain, body pain, memory loss, and chronic fatigue.

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No surprise that those making the money on the products are quick to dismiss and claim more likely to get hit by lightning….. really???? Like they said you avoid areas that increase any chance of getting struck by lightning. With additional testing maybe they would see more of a connection between ALCL and implants for any reason reconstruction or augmentation. Does this mean I don't want to have reconstruction? No not in the least. I don't want to look like this forever and yes I want to move forward but it might be with a different kind of material. Research and studies are needed and the outcome of my additional test which are still ahead.

Not sure if my situation helps any one else in any way. I know I have dark days but I hid them the best I can behind the smile that I let others see. I don't want to be that person no one wants to be around when you are always depressed. I steer clear of those type of people so I don't want to be one. Yes it is a depressing but the saying is… you have a choice on your attitude…. Maybe not your situation but your attitude you can control. And I know that all of the things going on are in God's hands. So I have to trust He will take care of it.

Does that mean I still don't cry? Absolutely NOT, I cry ALOT.

Do I have days where I am losing my spirit, you Bet I do.

But I still TRY and control what I can which is my attitude. Not easy, never going to say otherwise. But I have the most amazing friends and family so many people that I LOVE and that I really appreciate.

To be continued……

Thistoshallpass

Bevin

Thanks appreciate your comment and kind words.... I will post outcome from tomorrows test I am. in one support group and because everyone has had a different outcome and treatment..... it is hard to find others that experience the same thing other than breast cancer which is bad enough in itself.

I had a fabulous Christmas and hope you did as well and wish you a Healthy Happy New Year!

Thistoshallpass

Here I am sitting waiting in about 3 hours I will know the outcome of the Biopsy it is in my bones. Scared !

farmerlucy

THIS- crossing my fingers that everything is ok. Did you have a bone scan? Please update. Waiting with you.

vlnrph

Oh dear, thistoo! Does repeating your screen name help?

You certainly have done your research on implants and, if there are bone mets, you will learn that many women live long, productive lives despite advanced disease. Hoping this is not another complication because you already have been through so much...