LCIS blog- preventative bi-lateral mastectomy
Comments
-
Valarie------have you had any genetic testing? It would probably be a good idea with your strong family history of bc at such young ages. It could be really helpful to you in making decisions.
anne
0 -
Hi Anne,
Yes, I have spoken about genetic testing with my breast specialist. But, because of financial issues, we decided to wait until after my surgery Sept. 9th on deciding whether to do it or not.
I do realize that the results of genetic testing could be a big factor in deciding what to do, especially since I have a 20 year old daughter and worry about her facing this
Thanks Anne!
0 -
HI Brit: I also had a ALH and LCIS. I have a PBMX on 4/18/11 and I dont have a family history. I did not want to worry about going for tests all the time and worry if I was going to get breast cancer. For me, I know it was the right thing to do because I am a worrier. I would have thought about it every single day. I am 43 and have a son 12 and a daughter who will be 9 this month. I want to be around for a long long time for them. Take your time to decide. You will know what the right thing is for YOU to do.
ArleneMarie: Glad to hear everything went well with your grafting surgery.
0 -
Thanks Doreenanne,
If I could afford it, I would get a PBMX, too. No doubt about it! I know that everytime I go for a check up, there will be a reason to do a biopsy
I'm glad you have piece of mind now. How is your recovery? Did you have DIEP?
Take Care,
Valarie
0 -
Hi Brit,
I am a bit confused since you said that were diagnosed with LCIS. Will your insurance not cover a PBMX with your family history? That is, if you wanted to go for it. I. too, went for the initial genetic counseling but would have had to pay $3500 for the BRCA 1/2 test and I felt that I had already made my decision so I didn't need to spend the extra money when the genetitist felt that my outcome would be negative. Besides, it is only just a marker for the future. There are so many other markers to consider. I hope all goes well on Sept 9th for you.
0 -
"I know that everytime I go for a check up, there will be a reason to do a biopsy"
Valerie----- there is a higher likelihood of future biopsies with a diagnosis of LCIS, but it is not necessarily a foregone conclusion. I was diagnosed 8 years ago (and my risk is further elevated by family history of bc (mom had ILC) and I haven't had any further biopsies since my diagnosis. I think I would have to give the credit to my preventative meds (5 years of tamoxifen and now evista).
Anne
0 -
"I know that everytime I go for a check up, there will be a reason to do a biopsy"
Valerie----- there is a higher likelihood of future biopsies with a diagnosis of LCIS, but it is not necessarily a foregone conclusion. I was diagnosed 8 years ago (and my risk is further elevated by family history of bc (mom had ILC) and I haven't had any further biopsies since my diagnosis. I think I would have to give the credit to my preventative meds (5 years of tamoxifen and now evista).
Anne
0 -
Arlene Marie. I can't wait to read your blog! I just saw the thread and read the replies. Great topic.
I haven't regretted my PBLM a single day and in fact, I'm more grateful as days go by.
I opted for no recon and fortunately that wasn't a fight and I wasn't facing finger wagging and being labeled a "radical" as I and many others who chose PBLM for LCIS have experienced. Coosing mastectomy for LCIS immediately subjects a woman to harsh retoric and judgement by some concerned with breast health.
So I admire this thread and your blog must be grand. Thanks to you and others who share your experience in this journey. Many women are not offered this vital choice. I pray they are able to search and find a good, compassionate and skilled surgeon who offers all options.0 -
ArleneMarie,
I have not explored getting insurance to pay for genetic testing or PBM yet. I was just diagosed in July with ADH and LCIS. My specialist did not recommend getting a PBM yet. But, she did say that she's concerned it may come to that since my calcifications are increasing "signifigantly" every 6 months. So, she does believe I have a lot of biopsies in my future.
As far as insurance paying. Yes, they pay 80% of everything. But, due to losing my job... getting another at a lot lower pay rate, my husband having two major surgeries that we're paying $350 a month for, my 20% is still a lot of money.
Thanks for all your feedback, ladies. I really do appreciate it. Well, a week today I will have Excisional surgery ... I get more nervous as it gets closer!
Have a great Labor Day weekend!!
Valarie
0 -
Anne: That is exciting to hear and I hope all is well forever. Funny (in an odd way) but I couldn't bear the thought of drugs so I chose the mastectomy. That probably sounds so weird huh? I guess everyone has different tolerences.
Valerie: That just sucks! (About the job and your husband's surgeries). I did want to tell you that my BS did not suggest a mastectomy. I did all the follow-up and meetings on my own and decided to go ahead and then made sure insurance would pay for it. I worte it all down in my blog if you wanted to start at the very beginning.
Miss Queen
Grab a glass of wine and start at the beginning of the blog. You will probably remember a lot of the process...with a bit of humor added.
0 -
Brit: I had TE put in. I had my exchange surgery on 8/5/11 to silicone implants
0 -
ArleneMarie,
A nice glass of wine, a little time, a comfortable chair, and an interesting, humorous blog is just the ticket.
I've just started the blog and look forward to reading more this evening.
Thanks for the invite!
All the best to everyone.0 -
First, I hope you and other posters are well following recent surgeries/procedures.
The blog is fabulous! I particularly loved these comments:
"The whole purpose of writing was to be candid and honest about LCIS and the mastectomy process."
"Take DCIS and LCIS seriously."
"Yup...those two "knobs" are battery operated and blink red!", words and pic of nobs on apron.
Last I ordered Jackie Fox's book; From Zero to Mastectomy... (There's one left on Amazon) the book talks having a mastectomy following a diagnoses of DCIS. The comment section on Amazon is worth reading.
Arlene, you have succeeded in offering a viewpoint that's warm, important and humorous, as Jackie Foxe's is purported to be. Please consider writing a similar book about LCIS and the mastectomy choice, in your spare time of course!0 -
Thank you so much for the nice comments Missippiqueen. I am happy to say that the fat grafting went extremely well and my tummy is now minus that horrible little roll that one gets after age 45. Who would have known about all of the positives coming from a BPMX????
0 -
I saw your topic and had to msg you immediately. I was dx in later August after having two biopsies. The second one diagnosed me with LCIS and a small microscopic invasion. My world crashed down upon me!! I also constracted E-Coli in that breast which made me soooo ill. I chose to have my surgery, treatment and reconstruction in Pittsburgh at Magee. This dr. had my slides reexamined and after a grueling six weeks of believing I had invasive, they told me it was NOT!. Still have LCIS. I know this sounds terrible, but I found that planning the surgery made me feel better/proactive. Now I'm hearing that I should wait and see. I don't know if my nerves can handle this and I DO NOT want to take drugs. How did you handle your decision?
0 -
My LCIS came on the heels of a lifetime of watching my mom, her sisters, their mother, their grandmother get this d**m disease, all premenopausal, and the only one who lasted more than a year post diagnosis is my mother, who is 82 today. Amazingly, I'm BRCA negative.
For me the decision was very easy--PBMX and reconstruction. I did have SNB which was negative, and so was the path of all the removed breast tissue. I feel incredibly lucky that I got an early warning and was able to take action to put the whole affair behind me.
Had I not had such a bodacious family history, I am quite sure I would have struggled mightily with my choices and I sure do respect all here who have opted for surveillance.
Words cannot express my emotion when I received my path report and I realized that my choice had been validated...I really did take care of it before it happened.
Now I am there for my 30-year old daughter who begins her own lifetime of vigil and worry. To all who are weighing options, I second all the posts that stress that you have some time to research and think, think, think!
0 -
JMM- thank you for your message. I was walking in the Susan B Komen 3 day walk in Atlanta and I just got back today. How did I make my decision? If you have the chance, go to my blog and scroll to the bery beginning. I wrote down the thought process. I hope that helps. Call me anytime. Also.....my Breast surgeon did not want to do the mastectomy but when I told her I wanted to go ahead, she was on board. If you make the decision to proceed, you may have to push the envelope
Carol- my only sister and my mom and my only aunt all had breast cancer. Although we didn't test positive for BRCA, my sister and I decided that there obviously must be some sort of gene that is not identified. All the more reason to be proactive, right??
0 -
Some women have contacted me through my blog but I just wanted to post that if you would like to talk about an upcoming PBMX or even just need help in trying to weigh your options, please do not hesitate to PM me or email me using my private email. My email is on my blog. Seriously...anytime.....if I can help you, I will be more than happy to talk with you.
0 -
I just found your blog and it was wonderful..I had DCIS (moderate risk group) 3 1/2 yrs ago with radiation and started on Tamoxifen. Just recently had a stereotactic biopsy which showed LCIS, (now high risk group)so appears I have decisions to make. Am scheduled for an open biopsy in January...then the decisions willt begin. I am sure I will be coming to you for support and many many questions. My surgeon said my options are from close observation to BMX--nipple and skin sparing............so, after next months surgery..............will start investigating options.
0 -
Hi Donna,
I can't believe it's been a year this Saturday since I had the PBMX. I am soooooooo happy that I did it and I hope you feel confident in any decision you make. Please, please feel free to email me or if you want to talk on the phone, email me and I will give you my number. I love speaking with women going through the decision process because it makes me fell as if I can offer some insight being that I went through the exact same process. Seriously, anytime....I am there for you. PS...I am glad the blog helped. Can you believe it's been one year since I did it? Holy cow! I look and feel great too.
0 -
Thanks so much for your reply. I do not have surgery til Jan 9....so mid January I will probably have an idea of what my plan will be. I will let you know either way. You are amazing! Happy Anniversary.....and have a great holiday.
Donna
0 -
Hi. Thanks for writting about your experience. I am newly diagnosed with LCIS. I don't have a family of BC. The doctor told me that a bilateral mastectomy is not necessary. He gave me a prescription for tamoxifen but the side effects scare me. I am leaning towards PBM because I can't just do testing, wait and see what happens. I figure if I ever end up with an invasive BC I would probably need to have the mastectomy plus chemo plus radiation
0 -
Hi November,
The beginning part of the process is the worst, in my opinion, because with LCIS, there is such a grey area and it will be up to you to make the decision as to whether or not you will want a PBMX. My breast surgeon, too, did not want me to proceed with a PBMX and it was up to me to do the research and decide that that end result was what I desired. Once I made that decision, she was on board. Feel free to read my blog from the very beginning since I write about the process of decision making and then chronicalled the process of reconstruction. I have been told via email and phone conversations that the blog was helpful in that I was the guinea pig that went first. That is exaclty what I wanted to achieve in that I like to know what is coming next. It will be ONE FULL YEAR tomorrow that I had my mastectomy and it feels like ages ago. I look and feel great. When my good friend asked if they feel like a part of my body, I replied by telling her they will never feel like my real ones but I am comfortable with them being there. The implants have eliminated the posiibility of having to endure chemo and the other drugs that my sister is still enduring. She is currently on her 10th round of herceptin after completing 6 rounds of Taxotere which was beyond dreadful. She now has sore joints, weight gain, hot flashes, neuropathy and a weak heart because of those drugs. To top off her misery, she still has 4 more herceptin treatments and then 5 years of Tamoxifen. So, in all honesty, I feel so lucky in that I was able to avoid all of that by taking a pro-active stance and I am thankful, everyday, for those little silicone implants that make me look and feel as normal as can be. In a odd way, I am actually thankful for LCIS in that it helped me avoid everything my sister has to endue. I guess I can say I am lucky to have been diagnosed with it.
0 -
I am having a hard time deciding whether or not I should have recon immediately after BPMX or wait and do the recon at a later date. What if the pathology report ( after the mastectomy ) reveals something more than LCIS? What happens then if I already have the recon? That's why I am thinking that I should wait but then that would mean scheduling another surgery, more time for recovery...If you had immediate recon, how did you come to that decision? I am thinking of having the BMX in late February
0 -
Hi Nov,
I would really rethink about waiting on the reconstruction (in my humble opinion) since your body will have to heal and then reheal after another surgery. To me, it was such a natural thing to do to have the tissue expanders put into the breast area since it was already traumatized. There were less scars and the down time was minimal. I also think, mentally, I did not want to see myself "sans" breasts since THAT would traumatize my metal psyche and I don't know if I could have handled it. Does that help?
0 -
Thanks ArleneMarie
It does help but I read time and time again that after mastectomy that " I was upgraded to..."
that's my concern. What do I do if for example the patho reports shows ILC or IDCIS or DC, then what? that's the part that is concerning/confusing to me.
I agree with you that not doing immediate recon would mean another surgery and more healing time. It would probably feel incomplete as well. It's just a lot to think about. I also have diabetes ( on glucophage, no insulin ) wich makes healing slower. I have an appointment with the oncology surgeon this week; may be it will be clearer once I meet with him and go over my options. I will keep you posted. Thanks for taking the time to read and reply
0 -
I have NOT had a mastectomy, so I hesitate about posting about your surgical questions, but do know that the number of people that post about 'after their mastectomy they were upgraded to' are NOT necessarily representative of the number of people this happens to. You need a study to examine this question. The people who have 'nothing worse' often stop posting.
They do know that when LCIS is excised (not mastectomy), that about 20% are upgraded to 'something worse'. In this paper where they looked at a few PLCIS cases, about 30% were upgraded to invasive. http://www.ncbi.nlm.nih.gov/pubmed/20727019 (PLCIS is usually thought to be more aggressive than classic LCIS.)
This means that about 60-80% of these LCIS cases were NOT upgraded to something worse.
Unfortunately I can't find any studies that actually look solely at the subject of the number of women who have LCIS, have a mastectomy, and the incidence of these women who have invasive breast cancer at the mastectomy. It certainly is possible to have concurrent invasive breast cancer. I can't remember your history, so I don't know if you have had done other things such as an MRI.
I do encourage you to do as you are doing, and get as much information as you can from all your sources until you are somewhat confident about your choice. You are the person who will live with your choice, so what I say may be as much worth as the proverbial 'hill of beans'.
0 -
Great advice Leaf,
Nov...I guess I am a little confused since if they found more than LCIS after the mastectomy, wouldn't you feel confident that you made the right choice? If you were to find IBC or DCIS, you most probably would have had to have a mastectomy anyway so you would be one step ahead of the game. I hope I am reading your question correctly.
0 -
ArleneMarie-Sorry for any confusion. Yes I would be ahead of the game if they find anything more serious. I think I finally understand. I guess if I were diagnosed with anything more to begin with the treatment could be a mastectomy; therefore, if anything else is found after the reconstruction, no further treatment would be needed. Looking back, I don't know why this was so confusing to me but thanks for being there and for helping me. I guess when someone is overwhelmed, it is more difficult to understand even something simple
0 -
Thank you leaf for the information. Thank you for taking the time to read my posts and reply
0
