Wife just diagnosed

Cliffyw · August 2017

Hi

I am new here so I apologize if I should be posting this in an existing thread instead of starting a new one. My wife received her pathology report from a biopsy report on Monday. It found she has invasive lobular carcinoma.

I don't think I need help understanding the report as I have done a ton of reading the last two days. But I am desperately in need of some sort of guidance of what to expect over the next several months. I have been a wreck since we got the diagnosis and I know that is not good for either my wife or our 3 year old son who doesn't know what is going on. I also know I should probably find some spouse support group to join.

As background, if needed, her tumor seems to be a bit over 2 cm and rates as grade 2. It is estrogen and progesterone receptor positive and her2 negative. Also they biopsied one axillary lymph node and it came up negative. I know those last few notes are all very positive so that is some reassurance (although I also have heard that lymph node biopsies have high incidences of false negatives)

We are scheduled to meet with a surgeon tomorrow (and to get a second opinion on Monday).

Any advice would be appreciated.

Sjacobs146 · August 2017

I'm so sorry that circumstances have brought you to us, but you will receive lots of support and information here. Breast cancer is very treatable, and has a 5 year survival rate of 98%. This will very likely be just a small bump in the road for you and your wife. May I suggest a book called Breast Cancer Husband which my husband found very useful.

Right now it's difficult to know exactly what to expect over the next few months. You will know more after your wife's surgery. Most likely the doc will recommend lumpectomy, but your wife may consider a mastectomy. During surgery. The doc will likely remove some sentinel lymph nodes. The doc may also order an Oncotype test which helps determine whether your wife is a candidate for chemo or not. If your wife has a lumpectomy, radiation treatment is required.

Good luck to you and your wife...

Moderators · August 2017

Hi Cliffyw-

We're so sorry to hear about your wife's diagnosis. The first days and weeks after diagnosis can be very scary and stressful, you've come to the right place for support.

You might want to try reading through our ILC forum, lots of members who can offer their insights: https://community.breastcancer.org/forum/71.

The Mods

Icietla · August 2017

Welcome, Cliffyw. We are very sorry about your wife's diagnosis and all the fears and dread you are experiencing. A breast cancer diagnosis is always stunning.

Since you are being sent to a Surgeon next, it seems Surgery is contemplated as the first step in her treatment. The Surgeon will generally describe the surgical options.

Depending on the Surgery choice, the tumor size, and the tumor positioning, Chemotherapy may be recommended before surgery; and, depending on those and other factors, Radiation Treatment may be recommended after Surgery.

Some lymph nodes will be removed at the time of her breast surgery. Her Stage will be determined after her Surgery. If her tumor tissue and disease state meet criteria for OncotypeDx testing, the results from that testing can help guide the decision about Chemotherapy after Surgery.

If there is cause to suspect a familial cancer pattern in her case, then genetic testing for known cancer-associated gene mutations should be requested. The results can have some bearing on treatment decisions and on monitoring.

I would expect that after her active treatment, she will be advised to take medicine for five or more years.

I am going to round up links to some discussion threads that may be helpful.

Back soon.

Icietla · August 2017

In the ILC Forum section of this website, you will find many discussion threads from which you can learn a great deal about ILC, including characteristics that she may want to take into account in her deciding on surgery. Take the time to read through at least some of the longest ones (the ones having the most posts), such as these __

https://community.breastcancer.org/forum/71/topics/747515?page=1

https://community.breastcancer.org/forum/71/topics/835060?page=1

https://community.breastcancer.org/forum/71/topics/826786?page=1

Colt45 · August 2017

Cliffyw,

Fellow husband here. I'm going to contact you via PM. Prayers to you and your wife. Stay strong.

Cliffyw · August 2017

Thank you to all for the replies. Those ILC forums are very helpful. I am touched that there is so much support here.

hchen42 · August 2017

I am a fellow husband as well. My wife was diagnosed on July 31. Took me couple of days to realize the potential severity of the situation.

Pardon me if I hijack the thread and vent a bit,..

My wife's diagnosis is very similar to cliffyw's wife She had more tests done since 31. We are waiting for the final reports before we determine the course of action. Wife was a total wreck the first night, she barely slept. The past few nights, she was able to sleep more with help of some sleeping pills. Her appetite also went from non existent to much better today. Today, she had an egg, yogurt, milk , an energy bar for breakfast. For lunch, she was able to have pho (Vietnamese noodle) - same portion she typically has. Afternoon, she had some some caramel frappucino from Starbucks. At dinner, she was able to eat bigger portion than usual. She just had some water melon and guava. I find that encouraging. Her weight has dropped from 130lb to 126lb the first 2 days. Hopefully, she'll gain some of that back tmw. This past week, I had to constantly remind her to eat so she has strength to fight this. At the same time, she found some mental comfort in reading some bible passages - we are not Christians nor religious.

molliefish · August 2017

Hchen42 and Cliffyw I'm really sorry that you both are here, that we all are here. The next few days and weeks will be and adjustment period for all of you. You have many decisions to make. Be sure to take another person or a recording device to your appointments so you 'hear' everything. It can be very hard to take it all in and adjust to the new normal.

You can expect sugical consults, oncologist consults, radiation consults. The waiting is by far the worst part of cancer and cancer diagnosis. When you are taking some kind of action you will feel better.

Read these boards and review the timelines of the men and women who have been diagnosed with and either survived or passed away as a result of cancer. This will give you some comfort, that your wives are not going to die tomorrow, or the next day... but this will be a journey.. a marathon, not a sprint...

But you can be well, have fun, live life and appreciate the world around you... let's be frank.. none of us gets out alive, but some of us have longer journeys than others. I have been cancer free for just over 2 years... a very dear friend of mine was diagnosed a year after me and diagnosed with brain, liver, lung and chest wall mets just a few weeks ago... there is no rhyme or reason to it. But you can either drive the bus or be a passenger.

Cliffyw · August 2017

Hi Hchen

We are still in limbo too. It seems to be taking forever. We met with one surgeon on Thursday, and unfortunately still seem in for a long wait for surgery. That surgeon wants to her do a genetic panel and meet with a plastic surgeon before scheduling surgery. My wife has pretty much decided she does not want reconstruction so the PS meeting seems pretty pointless. We can't see the genetic counselor until this Thursday and then we will need to wait up to two more weeks for results. It all seems to take too long especially since we are already in favor of having a BMX if possible. We are meeting another surgeon today and will see what she says. It would be tough to not go with the first surgeon if only because it required a doctor friend to even get us that appointment (when we tried to schedule her ourselves, we were told she is not accepting new patients), but I'm not sure what we'll do. Both surgeons have good reputations (one more academic).

My wife has been eating ok despite her depression. I want her to gain weight too so she has a good base going into the difficult ordeal awaiting her. But it is so tough on her. it seems any mention (tv or movie for example) of somebody losing a parent at a young age will set her off into extreme sadness as she thinks of our own son.

Gwin · August 2017

This disease is scary, random (at least from my point of view), and highly disruptive. My husband was like you last summer; taking notes, researching, etc. I am very lucky to have him, and it sounds like you are a great support as well.

A few pieces of advice/thoughts: take notes at Dr appointments, practice meditation and focused breathing for the scary times, pray if that's your thing, keep a journal, try to stay away from crazy websites, and above all, remember that she will get through this. Treatment is very effective today. When I was newly diagnosed, I kept saying "I just want things to go back to the way they were." Once I truly made a decision to accept my "new normal", I was better equipped to mentally move forward. I also tried to ocus on the idea that living in 2017 allows us many different treatment options. I made a conscious effort to view chemo as a lifesaving medicine. Also, surgery was scary, but I had very little pain afterwards. I consider myself the "luckiest" cancer patient in the world. I know that sounds bizarre, but I just went with it and was grateful that there were very few side effects.

The very best wishes to you both. You can do this

MTwoman · August 2017

cliffyw, Plastic surgeons do more than just full reconstruction. Having a consult does not mean your wife is committing to recon. Sometimes, they just insure the best "cosmetic outcome". If the first surgeon is so highly recommended, and encourages the consult, sounds like sound advice. I know any delay feels like forever and this initial treatment planning stage seems to drag on; but once your wife has picked her team and the plan is set things will begin to feel better. ((hugs))

hchen42 · August 2017

Hi Everyone,

Thanks so much for everyone's help and encouragement.

Cliffyw, hang in there.

Since my last post, my wife's depression/anxiety have gone up and down. We've 3 friends who've dealt with breast cancer. They've all recovered. They helped with my wife's mental state more than I could provide. One has been recovered for 12 years. Wife has great friends who help encouraging her. We also reminded her of a quote from the movie Shawshank Redemption, do you want to "get busy living or get busy dying"?

After spoken to couple of surgeons, we've decided to go with a surgeon at Memorial Sloan Kettering (MSK). She operated on one of our friends 3 years ago. We've decided to do bilateral mastectomy and reconstruction. Date is set in about 2 weeks.

Wife's appetite is better now. She also realizes she needs to beef up a bit to fight cancer; she's eating more. After losing 4 lbs in the first 2 days, she has gained back 2.5 lb. So that's encouraging. Based on my observation, it's mostly mental at this moment.

mustlovepoodles · August 2017

Wise words, molliefish. Indeed, we cannot control whether we get cancer or not. But we can take control of our response to bad news, rather than let ourselves be buffeted and drowned by it.

Right now, y'all are in the worst place--you have a little bit of knowledge, but no firm plan. Most of us felt adrift, angry, and devastated by the news. Once we had a plan in place, it often felt like we were taking back some control in our lives. Everyone here is alive, whether we're at stage 1 or stage 4. We have all chosen to LIVE our lives to the best that we can, under the circumstances.

Depression is quite common with a diagnosis of a serious illness. Just know that there is treatment. There is no reason to suffer and put up with those negative symptons.

Icietla · August 2017

Cliffyw, keep us posted. We care about your wife too, and we are very glad for her that she has you caring so much.

If she decides to "go flat," she will be in some great company. Whatever choice she makes -- reconstruction or not --, she will be in some great company.

We have a very supportive "Flat" population in this forum section here__

https://community.breastcancer.org/forum/82

Cliffyw · August 2017

Hi Icietla

Thank you for reaching out. Following her initial ultrasound, my wife had an MRI which showed the ILC tumor is likely much larger (5.9cm). That essentially ended any chance of BCS on her left breast (which neither of us was in favor of anyway). It also showed a suspicious mass in her other breast. Although the follow-up biopsy showed that mass to be benign, she decided that a BMX was the way to go for her. She does not want to have to go through ultrasounds/biopsies every year on her right breast, which would likely happen if it were not removed. Also, her genetic results did not necessarily indicate that her cancer was genetic, but there was an abnormality that could not be ruled out.

She had her surgery on Wednesday and seems to be recovering well. Reconstruction was not an option. She was adverse to start with, but also given the size of the tumor, it seems likely she will need radiation despite having a mastectomy and the plastic surgeon (who surprised us by not pushing anything) recommended that if she does want reconstruction she should wait until she is finished treatment.

We will get the pathology results later this week, so fingers crossed on lymph nodes and margins (and even hoping for a smaller than imaged tumor if possible). We then meet with her oncologist in a few weeks (and may go visit MSK for a second opinion on oncology).

My wife is not sure if she will eventually want reconstruction. She has attempted to avoid looking at the surgical site, both when the nurses examined her in the hospital and at home. The main reason she would not want reconstruction though is just the desire to avoid anymore procedures.

MTwoman · August 2017

Thanks so much for the update. I am glad she saw the PS for a consultation, and that your were (pleasantly?) surprised by the recommendation. I think taking time to heal and go through the other treatments will give your wife the time to make a decision that is right for her. Sometimes what we want changes over time. Sending you both warm wishes and gentle ((Hugs))

Cliffyw · August 2017

Thank you MTWoman. Yes, we were very pleasantly surprised with the PS. I'm sure others have experienced this, but it seems like any kindness we receive while going through this can lead to tears from either of us. Things like friends we weren't close to offering to bring us meals, or watch our son. The PS was an example of this. He may just have excellent bedside manners, but he was very kind and empathetic during our consult, enough to make my wife cry. We thought going in that of course a PS would recommend reconstruction,but he wasn't like that at all.

Icietla · August 2017

I am so glad your wife's recovery is going well and that she had a Doctor who did not take issue with her making her own decision for her own body.

Some decide -- even years later -- to have reconstruction. Some who have reconstruction later decide to "go flat."

Of course she will have understanding and support from here in whatever she may decide.

Icietla · August 2017

Every day her body will feel a bit less pained. The nerve pain strikes will decrease in their frequency. The area where her lymph nodes were taken from the left side of her chest will probably soon be the sorest part, and likely sore for a much longer time. Every day she will be able to do more with her hands and arms.

She has made a giant leap in her treatment.

beach2beach · August 2017

Cliffyw,

Glad your wife is on the road to recovery. When i first met with the PS, I had put it right out there that I may back out of it the last min. I also told him that if i went along with it, that I was in survival mode so that if at anytime he did not think it would work, to just sew me up and be done with it. He heard where I was coming from. So important that dr's make you feel a part of the process. Glad they did not push her with it.

Icietla · August 2017

cliffyw and hchen42 -- It takes several weeks for these free lymphedema risk alert bands to arrive by mail __

http://lymphedema.com/alertband.htm

ChiSandy · August 2017

cliffyw and hchen2, my hospital actually gave me a pink LE alert wristband. It's huge and looks like a temporary hospital ID band. My BS' NP suggested that since I also have antibiotic allergies I get a MedicAlert bracelet or pendant for everyday wear. I got one with a red universal medical alert symbol, but my LE doc suggested I get one with a pink symbol instead, because if EMTs or ER personnel don't see pink, they don't think “LE risk, don't use that arm." I got my ID plate through Laurenshope.com, and paired it with a faux Pandora-style bracelet from some vendor on Amazon. (Real Pandora clasps don't accommodate ID plates, but this stainless steel bracelet had an end cap that unscrewed for adding charms, and dual lobster claw clasps to engage the rings on either end of the plate. Both arrived within a week. One of those combos, and a few starter charms reflecting her interests, might be a nice comfort present for your wives—especially if they already collect Pandoras.

(Pandora itself doesn't make medical alert charms—apparently it's “not a thing" in Denmark, the corporate home; there are several vendors that sell the alert bead charms—for various ailments--to fit a Pandora-style, aka “European charm" bracelet; but without that all-important conspicuous ID plate, emergency personnel won't realize it's a medical-alert bracelet).

Here’s mine:

ChiSandy · August 2017

Should also mention the bracelet should be a little bigger than Pandora recommends, so that it doesn’t bind.

As to the “beef up” suggestions, be very, very careful unless your wives are already underweight. Anti-hormonal meds (aromatase inhibitors or tamoxifen) prescribed for estrogen-positive breast cancer can slow metabolism dramatically and cause weight gain beyond what is desirable. And chemo is often given with steroids to mitigate the side effects, so there’s weight gain there too. The image of the emaciated cancer patient rarely applies to early-stage breast cancer patients, especially those undergoing initial chemo or anti-hormonal treatments. And excess weight (especially fat) can be a risk factor for recurrence because fat cells make estrogen.

But what is essential is to eat more protein than usual—the body needs it to heal from injury, and surgery is an “injury."

MexicoHeather · August 2017

CliffyW:

You sound like a caring husband. I have been very fortunate in that regard. Accepting help from your friends, and even folks who you didn't really know well before is the way to go.

Try to protect her from the stupid things people will say to her! Maybe a rescue "code word"!

Also, this is a long emergency. I takes a long time to recover and there are lots of hormonal side effects with the ER+/PR+.

Hugs. Get some rest.

Cliffyw · August 2017

Thank you all. To ChiSandy, and Icietla, can you explain to me what those bracelets are for? Are they for people who have lymphedema or just may be at risk?

Cliffyw · September 2017

I just wanted to provide an update. We received the post-operative pathology and the results were not as positive as I would have liked. Every aspect was considered fine, but all had a negative attached to it.

The margins were negative - however it was < 1mm at the posterior (toward the pectoralis muscle)

The sentinel lymph nodes were clinically negative - however 4 of 5 had isolated tumor cells (ITC).

The tumor size was 5.6cm, so in line with the 5.9 cm from the MRI. Also, they found 3 other small tumors in the same breast ranging in size from 0.5 -3 mm.

It is the lymph nodes that I find most concerning. There is some evidence (https://www.ncbi.nlm.nih.gov/m/pubmed/20347308/) that ITC in ILC is more of an issue given the way that ILC cells spread and that not classifying an ITC node as positive in those circumstances can lead to understaging of ILC patients.

As is, they are classifying her lymph nodes as pN0 (i+) and are not performing a further axillary dissection (although that could still change but seems unlikely). I am somewhat worried that this means she will be undertreated. I understand somewhat if just one node had ITC, but 4 makes it seem more serious to me. Removing additional nodes would open the risk of lymphedema but it also means they could be leaving potential growths in the nodes.

MTwoman · September 2017

cliffyw, So sorry that the news wasn't what you'd hoped. I think a consult to discuss your wife's treatment, in lieu of that research article and your concerns, is warranted. I looked and didn't find any more evidence, so the MO might not be willing to adjust recommendations based on one study with a small "n". I can't read the entire article (it's behind a paywall) so can't really look at more of the specifics from the study. I don't know if you have read the whole article, but hopefully your wife's MO has and can speak to you both about it and it's implications in her specific case.

Momine · September 2017

Cliffy, sorry to hear about the path report. I can understand why it is worrisome. Have you seen an oncologist yet? If not, I would urge you to do so, before any further surgery is either ruled out or done.

Cliffyw · September 2017

Thank you MTwoman and Momine. We have not yet seen an onco. We see the local one next Tuesday, and then have an appointment at MSK in New York on the following Tuesday. I am not quite sure what we plan on using the MSK appointment for, since receiving treatment up there is not really practical. My wife could stay with her brother and his family, but she would not want to be away from me or our son for too long and I can't relocate there due to work (and we need my work for our health insurance).

We see the surgeon (or her nurse practitioner) this Thursday to make sure the drain holes are healing ok, so I may ask about it then as well. At the post-op visit, we only saw the NP who told us the surgeon might bring up the idea of axillary dissection to the hospitals "tumor board" but she didn't know if she would. She also mentioned she would ask the onco if she wants my wife to have scans done before her visit next week.

I actually did not read the whole article (don't have access to the paywall), but I read a similar argument in another paper that I unfortunately did not bookmark and can not find. I found this one through this article on node pathology (which I found really good) - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4804148/

MTwoman · September 2017

Cliffyw, you can always see the MO at MSK for a second opinion consult. It is actually quite common for an MO to create a treatment plan that is then executed elsewhere, so you are NOT committing to treatment at MSK. Take all of your wife's info (the binder with all reports, images, etc) and get the MO's opinion on what treatment they would recommend. You could also have a discussion on the article(s) and what impact they make on those recommendations. If you here the same recommendations from both MOs then hopefully you feel reassured about the course of treatment. If they differ, then you can ask questions about why and make a well informed decision then (or seek a third, tie breaker).

Wife just diagnosed

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