Diagnosed Yesterday 1/2/18

Veeder14

Thank you to whom ever suggested I join this forum, I've been posting on the main one. I was diagnosed yesterday with Invasive Lobular Carcinoma. It does sound scary. I hear what you're saying about "urgent referral" I think that was made so it would be processed right away. I just called and the referral is still in triage. The surgeon is familiar with me from my previous Melanoma surgery last year however I'm anxious to get an app't and hear what my options are.

I am 61 and BRAC 2 and because I am high risk I was given an MRI in 2016 which was clear, and a follow up MRI Dec 2017 which showed a 5 mm irregular mass. Still awaiting further biopsy results.

My first question is: Because the cancer is the invasive type and pushed outside the lobular into tissues (I think that's what the report means), does that mean it has spread to the lymph nodes already? Is that how it spreads into the blood stream? Is this cancer worse than Duct cancers? If it has, would having a lumpectomy or mastectomy make a difference in treating the cancer? Thanks in advance if anyone knows the answers to my questions.

Georgia1

Hi Veeder. I'm not a doctor of course, but "invasive" does not mean it is in the lymph nodes. That will be determined for sure during surgery, although many doctors can get a good sense of lymph node involvement from looking at US or MRI. ILC is not worse than IDC, it just behaves differently in terms of spread; it jumps (not a technical term ) to make a second tumor instead of growing larger in one lump like IDC. It also tends to be ER+, so in general responds well to Tamoxifen or other hormone therapy, and if small is a bit less likely than IDC to require chemo.

Lumpectomy vs masectomy would be your decision once you know size, ER receptor status and whether there is only one spot or two. Happy to answer other questions but as you can see your biopsy will have useful info. and then you can make a plan. You can beat this!

grandma3X

Veeder20- In general, ILC is thought to be less aggressive than IDC. Do you have the full pathology report with ER, PR and Her2 status? 5mm is very small - less than a quarter inch in diameter. If it is invasive, it does not mean that if has invaded your lymph nodes. You should talk with a surgeon, but for a small tumor like yours, you may be a good candidate for lumpectomy.

Best wishes.

Veeder14

Thank you grandma3x. The full biopsy report is not back yet, hopefully in a few days. Yes, the tumor is small that's why none of the doctors could feel it, and it only showed up on MRI, not mammogram or ultrasound. I was given the results that were back yesterday by the NP at the Breast Center while now awaiting an app't with the surgeon. I got upset when the NP automatically suggested I get a bilateral mastetcomy without giving me any specifics, just that I'm BRAC 2.

Veeder14

Thank you Georgia1,

I appreciate you taking the time to answer my questions. My mind is just going non stop about all these things until I can talk with the surgeon.

gkbuser

veeder, I know this is a very scary time for you. I had ILC also. ILC is not worse than IDC (can be better actually) just can be more "sneaky" with how it grows, that could be why it didnt show on ultasound and mammogram. Sounds like you caught yours early. Hopefully your surgeon will help guide you through the process of what surgery is best for you. Having a lumpectomy means you get radiation - thats what I had. If you have mx then you may not need radiation. At this point take it one step at a time and we are all here to support you. Please keep us updated.

beach2beach

Vedeer,

I can't add much more than what everyone else has said. Sorry you are hear, but welcome...tons of support. From what I read ILC tends to grow slower and be less aggressive. Mine was 7mm. Found on ultrasound. Mammo was clear. Ductal is in the ducts, lobular in the lobes. Invasive just means it broke out of the lobe or in IDC out of the ducts. Once you get the hormonal status you will have a better picture.

Very personal choice on lumpectomy vs mastectomy. Statistics I believe show about same survival rate. I chose a double mastectomy because I felt I'd be waiting for the other shoe to drop. I already had biopsies on my left one several times so just taking care of my right one, which had the cancer, just did not make sense to me. My anxiety. I did not want to go 6mths to 6mths of surveillance. To me, felt like I would be just waiting for the next call that it's back again or in the other breast. I also had small boobs and taking a chunk out of it would have left them even flatter lol. Like I said, very personal choice. I don't regret mine. I had no chemo, no rads.

Please update us once you get the rest of your pathology report.

Snickersmom

Veeder - my tumor was 5mm and was Stage 1A. While I had only 1 tumor that was definitely cancerous, there were two other suspicious areas and so rather than have a single mastectomy, I chose to have a bilateral. I didn't want to have to worry about my other breast. The size and stage were not confirmed until my surgery and my lymph nodes were clean. Mine was invasive lobular but invasive did not mean it was in my lymph nodes, and it wasn't.

I chose not to have reconstruction and that was the right decision for me. I don't miss something that tried to kill me. I am on hormone therapy. No chemo or radiation.

Get all of the information you can and copies of everything. One thing I did which really helped was to document everything. My husband went with me (and still does) to every appointment because he remembered things I forgot because i was so scared and numb. then I wrote it all down when I got home. Ask questions and keep asking; no question is stupid.

And keep posting and asking questions on this forum. there are over 198,000 of us and you will get such great information and so much support.

Hang in there; you will be fine

Veeder14

Thanks for all the information and support. I was wondering for those of you who had bilateral mastectomy-how limited physically were you in the first month or so after surgery. Did you really have to not raise your arms or use your hands? Seems like a huge surgery. One of my concerns is my on going spine problems and sitting around or laying in bed not exercising, doing house chores, etc., is really not good for me.

Icietla

Welcome, Veeder14, and my sincere condolences.

My use of one of my arms has been very limited since childhood, and my use of my other arm has also been very limited for about four years now. I can tell you about some immediate limitations following the surgery, but understand, I do not have the experience of having had that surgery starting with and recovering to ordinary arm use abilities.

There is very little arm use in the first days following the surgery. The upper arms -- humerus parts -- will not want to be extended from the trunk. There is a short time -- only a couple of days -- with only the reaching range one can have with one's elbows down at one's sides, against the trunk. So if one's height is about 5'4" or less, one would likely have to lean and rise on tiptoes to wash one's hands at a lavatory in the first days. One would likely want to use smallish, lightweight drinking vessels and drinking straws. In the unfortunate event of a fall, one would be incapable of the usual reflexive arm motions to catch oneself. Each successive day, arm reach and apparent strength improve. The hands are not useless. Immediately after surgery their use involving arm strength is much more limited. As example, a manual task like opening a child safety cap on a medicine bottle might be too challenging soon after the surgery.

There is drain tubing installed in the surgery sites -- the mastectomy sites and the area/s from which axillary lymph nodes are taken in connection with the mastectomy surgery. Until the drains are removed, best not to raise the elbow/s any higher than shoulder level.

About a week after my drains removal, I was instructed on some simple arm exercises to recover my (very limited) reaching range.

Veeder14

Thank you Icietla for telling me your experience. I hadn't thought about not being able to open medication bottles, or using a light weight cup (as I usually drink out of 1 pint water bottles. I guess I will need to plan ahead and get some assistance.

Icietla

You are very welcome.

If it would help, your Doctor might order a longer Hospital stay for you and some regular Home Health Care visits for when you are back home.

In these linked threads are lots of tips you may find helpful.

Back soon.

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Oct 25, 2017 08:49PM Icietla wrote:

Hi Ceci-246. You will need a responsible adult to transport you to and from the Hospital; to keep secure your Identification and other personal effects while you are in the Hospital; to get your pain medicine for you asap when you leave the Hospital, unless it has already been supplied; and, before you leave the Hospital, to learn (and practice) how your drains maintenance is to be done. [In the Post-Op Recovery, you may or may not observe the instruction as to your drains maintenance, and you may not recall much of it.]

Here is a thread you may find helpful__

https://community.breastcancer.org/forum/91/topics/857555?page=1

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https://community.breastcancer.org/forum/91/topics/859562?page=1

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Aug 5, 2017 06:15AM - edited Aug 5, 2017 12:43PM by Icietla

Go ahead and change out batteries in overhead smoke/CO alarms. If their batteries should fail over the next few months, that could be a big problem. Head it off by installing fresh batteries now.

You will be on strong pain medicine. Have that medicine supplied in an easy-to-open container. Get your other pills put into easy-to-open containers or dispensers. Eat something -- have at least a little something on your stomach -- and also go to the bathroom before you take the pain medicine. Once you take the pain medicine, you need to stay down and still for at least the next hour following your dosing.

Cotton balls and rubbing alcohol (try to get it with a flip-top cap) will be very helpful in your maintenance of your drains. They would also make it easy to keep clean the areas around your wounds or wound dressings. Keep those areas covered -- under clean clothing -- except when you are doing drain maintenance or cleaning the areas around your wounds or wound dressings.

You must not fall! You will be at more than the usual risk of falling because of the pain medicine. Your present lower extremity issues also may increase that risk. Your arm use will be severely limited already, and your chest will be seriously injured already. You must not fall! Please have your Doctor order the Hospital to supply you with a walker to take home with you. You want an ordinary walker (not a rollator) having a pair of wheels at its front/leading feet. That would be the safest, easiest, best appliance for your situation. The hospital personnel should make any necessary adjustments to its height for you. Then you must use it whenever you are to be up and about!

Best wishes for a smooth great recovery.

(((Hugs)))

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https://community.breastcancer.org/forum/91/topics/857555?page=1

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Mar 27, 2017 01:29AM Icietla wrote:

I had one total mastectomy and one modified radical mastectomy. On each side the surgery took down to and including the deep fascia.

Yes, inform your Surgeon of your balance issues, and have your Surgeon make sure to direct the Hospital to supply you with a walker to take home with you.

This is very important -- Your Caregiver should be a person having no substance abuse problems nor close connection with any persons having substance abuse problems -- None! And while they are your Caregiver, they should not have any visitors of their own.

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https://community.breastcancer.org/forum/91/topics/853716?page=1

Icietla

Here is an article with links to information about reducing your lymphedema risk__

http://www.breastcancer.org/treatment/lymphedema/reduce_risk

It takes several weeks for these free lymphedema risk alert bands to arrive by mail __

http://lymphedema.com/alertband.htm

Icietla

http://cleaningforareason.org/

https://cleaningforareason.org/patients-2/learn-more

Momine

As others have said, ILC is no worse than IDC, in terms of survival etc. The fact that it is invasive does not necessarily mean that it has spread to the lymph nodes.

One problem, however, with ILC as compared to IDC is that it can be more difficult to detect. This combined with your BRCA+ status explains why BMX was aired immediately as the surgical option. It is actually a relatively easy surgery, at least in my experience. However, I did not have reconstruction, which makes the surgery simpler and the recovery a good deal easier. The first week to two weeks are uncomfortable. You have drains, which everyone loathes, you can't sleep on your side, you can't lift your arms above shoulder level etc. However, the pain is minor, and there is no reason why you can't walk, for example, which I did as soon as I got to my room after surgery.

Anonymous

Veeder, my BMX with immediate reconstruction (1 surgery at the same time for both) was a non-event. I had nipple-sparing (my plastic surgeon biopsied the tissue under my nipples first, which wasn't painful). I was in the hospital 2 nights and could have stayed just one. When my plastic surgeon came in on the second morning after surgery he asked me how my arm movements and range were. When I told him I was doing yoga poses, like standing bow, in my hospital room, and then I raised both arms above my head, he laughed and told me to "get out of here!" Point is I had no real loss of range of movement, and I worked at gently stretching the muscles more by lying on my back and slowly stretching out my arms to full length on the floor before each of my yoga classes.

I had little to no pain with the surgery; I did lose all sensation, which made me sad, but it also made me happy when I had a baseline (post-surgery) MRI last year and the results came back showing no residual breast tissue left.

Since ILC tends to be more multi-focal than IDC, I didn't want something going wrong in my "good breast". And in my good breast, mild hyperplasia was found post surgery meaning there were some cells that could develop into b.c. later. I also had dense breasts making it hard to detect any kind of b.c., and I didn't want to risk something being missed.

BMX isn't for everyone and I waited almost 2 years after dx to make my decision. I would not want to be rushed into it early in my tx plan, since I had no idea about risks, benefits, etc.

Hugs,

Claire in AZ

Veeder14

Iciatla,

Thanks for your responses and links to check out. I had a terrible time with seromas after my Melanoma surgery last year. They ended up getting infected and I got really sick and had to have a second surgery on the seromas to get rid of the infection. I don't want that to happen again.

Clareinaz,

I'm glad your surgery went well and you didn't have too much pain. I don't do well on narcotics so I'm hoping that I wouldn't have to take them for very many days after surgery. That's why I was wondering about the pain level. I know that I don't want reconstruction which would eliminate more surgery. When you said you lost sensation, do you mean that your whole chest area is permanently numb?

Chiarara

Hi Veeder14, sorry that you find yourself here! However,this is a great resource and support.

I had surgery for IDC/ILC in November and December 2017. Lucky I had the IDC, as that was what I felt and led me to investigate, leading to the discovery of the ILC as well.

I had a lumpectomy initially, however they were not able to get ‘clear margins’ ie there was a small ILC tumour right on the edge of the lumpectomy site. As a result, I elected to have a unilateral mastectomy, rather than risk another lumpectomy without clear margins. The problem of getting clear margins is not uncommon to ILC, due to the way it likes to create a ‘web’. Also, having the mastectomy gave me a good chance of avoiding radiotherapy.

Having had both surgeries, I found the recovery from the mastectomy easier, in many ways. I developed a hematoma after the lumpectomy (which is pretty rare, by the way) which was uncomfortable and slowed down healing. I took opioid medication on the first night after both operations, to sleep, and then took it for another 2 nights after the lumpectomy, it was not needed during the day. I was walking around a few hours after the op, had a shower the next day. I had the drains out about 48 hours after the mastectomy- I was really building that up in my mind, and it was completely OK, just a very odd feeling.

I elected not to have reconstruction, and am now about a month out from the surgery. I have almost got the full range of movement back, strength is OK, still a bit tight near the scarand mildly numb at the back of my arm (that actually dates from the lumpectomy and sentinel node op). After both ops, I noticed a significant improvement in energy and movement around 3 weeks afterwards (not sure if recon would have altered that).

Veeder14

Claireinaz,

Thank you so much for responding. I'm thinking just from reading other patients experiences that the lumpectomy isn't the way to go, especially since I'm BRAC 2 high risk. I'm sorry to hear you had to go through that and then end up having surgery again. I was thinking about the drains as some mention having them for weeks. I guess I can handle narcotics for a few days and being not too active for a couple of weeks. Nice to hear your on the mend and thanks again for writing back.

Veeder14

Sorry, meant to send reply back to Chiarara, please accept my apologies. Still figuring out this forum.

Anonymous

Hi Veeder, no worries!

Because nerves are severed when breast tissue is removed, I have no sensation when I lift or touch my breasts. I can feel the implants under the chest muscle (that's where mine are placed) but I can't feel anything else.

And when I go outside to run or walk and it's cold, my breasts (the implants) get really cold, too.

I thought about going "flat", but figured I already felt so affected by everything I went through during dx, tx and surgery I didn't want to look in the mirror and see daily reminders of what happened. At least on the outside I look normal to my eyes, and that was important to me. Millions of women embrace their flatness though, and are proud of it.

BTW, in case you don't know, insurance companies are obligated to pay for BMXs and also reconstruction surgery if we choose that route.

beach2beach

Vedeer,

I may not be the norm but I had an uneventful double nipple sparing mastectomy. I went home next day and was up walking since. They offered no narctotics, only ketorolac(heavy duty tylenol is what the nurse told me) and sent home with a few of those. By time I went to follow up to PS for drain removal 6days later I was able to raise my arms almost completely straight up. I practiced a bit each day. Guess that is how I dealt with it all, the adrenaline and anxiety I used to push myself. I had direct implants, (yes I agree with clair,,get that brrr feeling with them lol) but overall I am happy with them.

Everyone is different in terms of recovery and you may do very well too

Momine

Because I had lymph nodes removed, my surgeon did not want me to raise my arms above shoulder level for 2 weeks. It was to help avoid lymphedema. Apparently he does have the lowest LE rates of any breast surgeon around here.

Veeder14

Thanks Claireinaz, beachtobeach, and Momine, for your experiences. I'm sure I'll have lymph nodes taken out so will have limits on raising my arms. I'm glad you guys were able to have successful surgeries and reconstruction. I know I just want the mastectomy and don't want anymore surgery. I understand the reasons for wanting reconstruction. If I was working still or a lot younger I'd probably go for it. I don't know what a numb chest will be like without anything in front of it. Glad to hear that insurance has to pay for these surgeries. Fitness wise I'm in pretty good shape, it's just being inactive after surgery and taking narcotics that really messes me up. Thanks again for writing back, it means a lot to me to have support.

HollyDollyD

Reconstruction can always be done later - even if you don't think you want it now. So I wouldn't worry about the decision to go flat if that's what you want now. If you change your mind, you can always do that later. And if you don't it's not a biggie either. Not sure how that works from an insurance perspective, but just putting that out there so that you can make the choice you want for what you want.

Sorry about the diagnosis.

Sending you virtual hugs.

Holly

Veeder14

Thanks Holly. It's good to know that it can be done later. Since I haven't seen the surgeon yet this is valuable information. Because I have such severe back/neck problems I'm going to ask the surgeon to consult with orthopedics about how going flat or not would affect my back condition.

Momine

Veeder, it is certainly a good idea to get an ortho involved. However, potential back problems are often used as an excuse by plastic surgeons and prosthetics salespeople for why you need their services. In all my years of communicating with women who have been through BMX, I have yet to come across anyone who had this kind of problem. If people experience any change, it is usually for the better.

I have pretty bad scoliosis and a slipped disk. The boob loss had no effect, but it did make it easier to exercise, which has helped my back.

Veeder14

Momine,

Thanks for letting me know this. I kind of figured that it would make things better without weight on my chest. I read that patients can get prosthesis and just wondering if there's a water proof one available for going in the water.

EastcoastTS

As far as I know, according to the 1998 federal law, reconstruction and revisions are covered. Even if you wait years. There are definitely women on this forum that I've read about who waited years and it was covered.

So do what you want (BMX) and you have time to think on the rest. You don't have to decide everything now.

This is my unsolicited advice, but if I were BRCA+, I would go the BMX route as well. I did anyway due to ILC and how it shows (or doesn't!) on scans...but BRCA would have decided it for me, I think. I hope you find peace in your decision. We're here for you.

Veeder14

Since I am BRAC2 and everything I read points me to BMX and I will choose that option. Even though I wish I didn't have to make a decision like this but am forced to because of my diagnosis. I haven't seen the surgeon yet but since there's a delay I'm doing research on my own. I just want to get treated and can put off further surgery such as reconstruction. It's overwhelming enough just trying to get rid of the cancer. Thanks for your comments.

Chiarara

Hi Veeder,

I’m going to try a TruLife Leisure prosthesis for going in the water- it’s in the mail . I’ve been swimming recently without anything at all. While I’ve felt a little self conscious about it, it certainly feels good to stretch out tight area in my armpit. And being able to get back into my swimming and exercise was one reason I decided not to do recon at this point!

I think there was also a long thread on this forum (maybe check out the fitness sub-forum?)about using a shower puff to make a very light prosthesis for swimming.