what i know so far...please help

kae_md99

Hi all,

so this is what i know so far. DCIS, both breasts. IDC, right. 2.5cm on bu UTs , 3 cm on MRI. Er,Pr positive , Her2 positive ( just learned about result yesterday). MRI no nodal involvement,no chest wall involvement, no nipple involvement.chest xray (-),CBC,CMP normal.meeting my OS friday and my cancer center will try to squeeze in MO this friday also.is there any of you with similar features? what did you do as far as treatment is concerned? i will try to ask for maybe bone scan and Pet/CT to make sure. do you think neoadjuvant chemotherapy will work for me? while i know that final stage will be known after surgery, i am trying to prepare myself for any possible treatment.i really appreciate this board. am very scared.i am 44 years old, mom of 8 y/o twins, never thought this will happen.oh i have endometriosis and thickened endometrium so ooph and hysterectomy is probably on the horizon.thanks so much.

kae, will work on my signature

Lisey

Hi Kae,

Chin up. The fact you are hormone positive means you have more resources at your disposal. Now that HER2 has Herceptin, survival rates for it have gone way up.... nearly to where ER+ folks are. You will have chemo, since Herceptin needs it to fully work. I'm sure some Her2 ladies will pop on here to explain in more details about what to expect.

kae_md99

thanks Lisey.yes, the her2 (+) thing kinda made me sad but then i learned about herceptin...so i now know chemo will come my way..

SpecialK

kae - if you are in the US and have an IDC that is larger than 2cm I would think that both Herceptin and Perjeta would be offered, with chemo, neoadjuvently. Perjeta is currently FDA approved for tumors larger than 2cm, but that approval is for administration prior to surgery. There are some oncologists that have been able to get Perjeta for their patients adjuvently, but that is not the norm. Both of these drugs are targeted therapies, and are not chemo, but given with chemo - and both have been game changers for Her2+ patients. I would encourage you to come on over to the Triple Positive thread, linked below. Lots of knowledgeable folks, and people going through the same process, plus some of us old timers that are still around - for inspiration, lol!. One thing about neoadjuvent systemic treatment is that it can muddy the staging waters. What I have recommended in the past to friends and people on BCO who will undergo chemo prior to surgery is to have a SNB done at the time of port placement so you get a true picture of your nodal status, if this is important to you. It might not change treatment choices, but I know for myself, imaging did not show my true nodal status, only SNB prompted further investigation.

https://community.breastcancer.org/forum/80/topics/764183?page=999#idx_29967

kae_md99

specialK, is it also the "norm" to go ahead and do a BMX in my case since both breasts have cancer and do the adjuvant chemo later after surgery? thank you so much

kae

SpecialK

kae - Because of the limitation on use of Perjeta if I were in your shoes I would do the neo chemo to take advantage of using it and have the BMX afterward. Surgical choice is informed by size of the area that needs to be removed, and the recommendation of your docs based on the clinical presentation. The DCIS won't be affected by chemo, it is the IDC you need to be concerned with. I assume that the Her2+ result is on the IDC, correct?

kae_md99

yes, it is, IDC is her2 (+). i just learned that i wont be seeing my MO this friday when i see my OS in the same breast center, as they wont be able to squeeze me in. i will see her thursday next week.good point on the neo chemo Special K.is it hard to get insurance approve the Perjeta after chemo in the US? i am guessing the neoadjuvant chemo will be TCHP that i always read on discussions? so it is okay to have the neochemo first and do BMX later.. i apologize if i am all over the place with my questions but i am all new to these.lol.thanks so much!!

kae

kae_md99

oh specialK, i noticed that you had 14 nodes removed, may i ask how are you doing now with regards to lymphedema issues? i am so scared of LE. i am not scraed of losing my hair as long as they grow back but the possibility of LE terrifies me.

kae

MinusTwo

Kae - slow down girl. There's just no way to speed up the process that I know seems to be taking you down a very steep, ugly, twisty slide. There are lots of great information threads on BCO which will answer many of your questions and may give you some piece of mind. And you've got a number of threads going with ladies trying to answer your questions.

I am HER2+ and i agree with Special K. Neoadjuvant chemo (before surgery) with Herceptin & Perjeta seems to be the trending thought for best HER2+ treatment. I believe that Perjeta is RARELY approved or recommended after surgery. Yes, it's usually TCHP and then surgery. Some MOs will agree to do a PET/CT before surgery, but most will surely do a repeat CT &/or MRI to re-evaluate the tumor & get close positioning for the surgeon. In my case, I did not have a pCR with the TCHP (the tumor did not totally shrink) so I had AC chemo after surgery just to make sure. Then herceptin for the rest of the year and radiation.

Lots of things will be more definitive after surgery when they test those tissues. Of course you're worried about LE. Usually the docs will do a serial node biopsy with surgery. Yes, that can occasionally bring on LE, but it's really the only way to know if your nodes are clear. I did not get LE from my SNB but I was careful to get a sleeve & glove for airplane trips & continual repetitive tasks. And you'd have an LE risk after surgery even if they don't do an SNB.

I'm assuming by "OS" you mean a surgeon? Hopefully that is an experienced breast surgeon or a general surgeon who has done lots of breast surgeries. I suggest that you to see a PS (plastic surgeon) (or two) at this time and discuss various options for reconstruction or not. If you choose reconstruction, the PS will generally be involved during your initial surgery.

Hang in there girl. Things really will get easier once your treatment is in place and you know for sure what you're doing.

MinusTwo

Kae - I don't believe in borrowing trouble ahead of time, but you seem to be doing lots of research. This is a good site that was written by some of our knowledgeable BCO members. I'm hesitant to recommend this since you're in the early process, but since you're scared, it's better than going out to Dr.Google.

http://www.stepup-speakout.org/

kae_md99

hi minus two,

yes i am doing a lot of research bec i was diagnosed jan. 10. but because of insurance issues i am only able to get things going now. my mammo was done before thanksgiving where it was found something was wrong. its just that it was a slow process for me ( long story).. i had to beg my pcp for an mri. thanks so much! i will slow down and breathe

kae_md99

minus two,

OS is an oncologic surgeon.:

MinusTwo

Ah ha - thanks for the clarification Kae. Still, Herceptin is a wonder drug even if you can't get Perjeta. And I had no side effects other than a drippy nose. I did get a Power Port put in before chemo. I did this partly to spare my veins, but mostly so I wouldn't have the worry about sticks contributing to LE. Since Herceptin is a year long process, my MO recommended this. It was truly wonderful.

debiann

Kae, I see you want to ask for some additional scans, just to be sure there is no spread. You can certainly asked, but don't be surprised if the answer is no. Seems that the current trend is to only do additional scans, when/if there is a symptom or reason to scan. Many MO's don't do tumor markers anymore either unless you are stage iv. The reasoning, they say, is that scanning before symptoms appear does not improve survival rates and tumor markers are unreliable. Guess there is a risk for "false" positives and a lot of extra stress.

Whatever the reason, I'm ok about not doing a lot of extra scans. I'm happy believing I'm good until there is a good reason to think I'm not.

SpecialK

kae - I had surgery prior to chemo, Perjeta was not FDA approved when I was treated in 2011. I don't want to worry you with what I am going to say about lymphedema, but I want to answer your question. I had a BMX and my oncological breast surgeon performed a bi-lateral SNB at that time. I had two nodes removed from the non-cancer side, and one from the cancer side. Both SNBs were declared clear in the OR, but later in the lab the one from the cancer side was found to be positive. I later had ALND surgery and 11 more nodes were removed from the cancer side. Despite not showing previously on MRI I did have a much larger positive node further up in the axilla. I had no issues initially, but experienced a body wide sudden swelling event during chemo which triggered bi-lateral lymphedema, worse on the side with more nodes removed. I do not have an abundance of nodes - most people have more than I do - it is an individual thing. I am a person who did always have swelling issues, so I don't think my lymphatic system is very efficient - this probably contributed. My lymphedema is well controlled, and I take all the proper precautions, and honestly, I wouldn't change anything I did even though I have lymphedema now. The node was large enough that chemo and/or rads may not have cleared it, but surgery did, and I would rather have lymphedema than cancer. If anything I said here prompts a question, please ask!

kae_md99

thank you specialK!!! thank you all ladies for you help.i feel informed right now and i am ready to face my OS this friday.

thistooshallpass2010

Kae, I was diagnosed 1/7/17 and like you I have been on the internet researching, a lot! It's helped me understand some of the jargon and abbreviations flying around. I do know that DCIS is a good thing, sometimes considered "pre-cancer". No node, chest wall or nipple involvement is very good. My tumor is close to the chest wall and I'm concerned. The chest x-ray looked ok but I'll feel better after they do the lumpectomy on Monday and I know more. I'm scared too but I'm handling it so much better than initially! The initial "You have breast cancer" statement just froze me. It gets better :-) I am not Her2 + so I can't help you there. It seems there are many out there who can. Sending positive vibes.

kae_md99

thanks thistooshallpass( i like your username btw). im getting neoadjuvant today

Tunegrrl

Good luck, Kae! I hope it is easier than you expect, and smooth sailing all the way.

kae_md99

thanks tunegrrl

MinusTwo

ThistooShallPass - I see this is your first post. Sorry you had to join us. It's a good idea not to listen to dr google. There is a lot of old information on the web, not to mention false claims and scary stories. This a safe site and you can find out just about anything you want to know here.

Yes DCIS is not always considered cancer, but I had a BMX with DCIS. And even with both breasts removed with clean margins & clear serial nodes, I had a recurrence in a lymph node under the collar bone. This is not to scare you, just to let you know that your doc has more knowledge than any of us.

kae_md99

minustwo, wow,and i thought all along DCIs cannot spread...cancer can be really sneaky. maybe it had a lymphovascular invasion before?my dcis on the left has " a small focus suspected of beginning micro invasion " per pathology. plus i have dcis adjacent to my idc on the right. i think it started outas a dcis thrn ifiltrated. sorry for

MinusTwo

Kae - my surgeon & plastic surgeon & oncologist were all horribly upset - especially since there were LARGE clear margins with surgery. We finally decided there must have been a teen-age micro particle that had gone walkabout and just wasn't old enough to show up originally. And believe me, I had every possible test before surgery - CT, MRI, PET/CT and enough blood to drain me dry. At the time they didn't test DCIS for HER2, which would probably have made a difference if it showed up. Oncotype was not used for DCIS either since we knew there would be no further treatment. And genetic testing was not prevalent.

I do think I'm an outlier. Many women who come here with questions and for support through their treatment, soon get back to their "real" life, so lots of the success stories are missing.

kae_md99

so can they test dcis now for her2 status minustwo? mine only showed its er pr positive.. its not really an issue with me coz i am her2 pos on the right so im getting herceptin and perjet

MinusTwo

No, I don't think they test DCIS for HER2. Looks like you started chemo today. Hoping it went well. And hoping you joined February's chemo group. IT is so much easier going through this with others in the same boat.

kae_md99

yup i joined feb chemo thanks! now i have an issue again. insurance did not approve neulasta ( same issue that is why i had to be admitted today for chemo,my MO's strategy).so i will just probably need to buy neupogen. my MO said we can wait a few days but i am worried since my wbc is in the low normal and i get sick easily.

Kicks

DCIS and IDC are both Ductal Carcinoma. Simplistically - Ductal Carcinoma In Situ (DCIS) is Ductal Carcinoma within it's site. Invasive/Infiltrating Ductal Carcinoma (IBC) is Ductal Carcinoma that has spread (invaded/infiltrated) to other areas next to it. I guess another way of putting it is that while 'it' is DCIS, it has not spread yet but could/will. But once if spreads out - it's IDC.

There are MANY here with very positive results/stories with years of experience. Unfortunately, most 'newbies' tend to choose to dwell with the negative rather than the positive.