Feeling a little frustrated

MusicallyInclined

Hi All,

First I love this website, I have learned so much and I have so much more to learn. I have been reading articles and forums and you are all amazing. I am so glad one of my friends told me about this site.

This process has been tedious thus far and I was hoping that it would not go on forever, however the more I read the more I realize that this is a lifelong journey. I could use some feed back from anyone who may have had or is having a similar experience. On November 7^th, I went in for a follow up Mammogram and Ultrasound and they found something they didn't like the looks of, two days later they did a biopsy on my left breast. I have been diagnosed with Invasive Lobular Carcinoma. I saw the Surgeon to see what treatment looks like for me and he said, my cancer is a stage one and it looks like we caught it early. He said lumpectomy, radiation, hormone therepy and done. I had my surgery on January 2nd. The day of surgery they have you go get shot with some rads to light up the lymph nodes and mine were not feeling very festive evidently because they did not light up. When I did the follow up with the surgeon after the surgery he said that he got tissue all around the lymph nodes but did not get any of the lymph node tissue. He said he did not want to keep digging because if you go in blind you could really do a lot of damage.

I just had my first oncology appointment yesterday. When my Oncologist reviewed everything that had been done to date she ran a statistical test on the computer. Basically she put in my information age, type of cancer, size of tumor etc. The test is called an Breast Cancer nomogram sentinel lymph node test metastasis. This test tells us what the statistical chance is for cancer to be found in one of my lymph nodes. The result revealed a 28% chance that there is cancer in one of my lymph nodes. The Dr. said if it was 10% she wouldn't be so concerned, but we cannot ignore an almost 30% risk. The Dr. has ordered an ONCO test on the tumor so I read up on that. The Dr. indicated this test usually reviews node tissue as well, and in this case we do not have that so she was talking about the possibility of discussing my case with an Oncologist panel and having them review it. The course of action is what we need to decide at this point, and right now without these additional tests we just do not have enough information to make an informed decision.

The Dr. said she doesn't want to just send me off to radiation because then the radiologist will want to radiate under my arm and the risk for lymphedema is extremely high for me. Being that it is my left side and I am left handed this is something I want to avoid if at all possible. The Dr. is also going to have another conversation with the surgeon, while they do not want to go back in for another surgery it is possible that they may have to, I suggested that perhaps they put a wire into one of my lymph nodes making it possible for the surgeon to perhaps locate it that way. Again that is not something they want to do if they can avoid it. I have four weeks to wait, my follow up appointment at the end of this month to see what's next.

Any information or experiences that you have that may help me would be appreciated.

Thanks so very much!

Icietla

Welcome, MusicallyInclined. I am very sorry about your diagnosis and your worries. (((Hugs)))

I have more to say. I am very tired. Will be back later.

Icietla

I am thinking that your lymph nodes might be located by ultrasound before or during another surgery to collect them for examination.

I have not had Radiation Treatment. I have had some truncal lymphedema on my right side since my mastectomy surgery -- only over the area from which my lymph nodes were taken. That area has been puffy and sore since that surgery. My use of my arms is very limited -- especially the right arm, my dominant one -- because of old injuries. My arms do not have lymphedema, though, and I am especially careful about my use of the right one so as to minimize that risk.

djmammo

Music

A PET scan should tell your docs if there are abnormal nodes present under your arm and, if there are they could be localized with an US guided wire placement.

MusicallyInclined

I have heard of a pet scan, several people have said I should request one, this is great information. Thanks so much!

MusicallyInclined

Icietla, thank you for sharing your story with me, I think the Femara is what they may be giving me. If I may ask how has that been for you side effects wise.

Icietla

You are welcome.

As some background, I should tell you that from February, 2016, to June, 2016, I had four surgeries. From the second -- that was my first mastectomy surgery -- until the fourth -- that was my second mastectomy surgery -- , I was severely distressed about the condition of my chest. Between the mastectomy surgeries, I had total abdominal (open) hysterectomy and bilateral salpingo-oophorectomy.

I lost most of my hair in a long massive shed in later summer, 2016. It was not one of those periodic seasonal fall sheds I have had every few years. It was still summer, for one thing, and it was much more thinning than a (typical) seasonal fall shed would do -- about two-thirds of my hair fell out over I think about three months, starting soon after my fourth surgery that year. During that (shedding) time, I had three haircuts to cut off (the thinnest part of) my hair to knee length each time. Now the longest of my hair (there is much taper with naturally varying lengths) is about eleven inches longer, and there may be just about that much re-growth of my shed hair, too, as it is no longer see-through on my head. [Yes, I have awkward-looking, adaptive ways of managing my hair -- otherwise by benign neglect --, and I have assistance with it, too.]

Two points to all this -- first, that there are other possible explanations (other than the medicine) for my substantial hair loss that year; and second, that even with the medicine, one's hair might grow at an ordinary hair growth rate.

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Aug 24, 2017 08:26PM Icietla wrote:

I have been on Letrozole for almost seventeen months now. I hope to be able to take it for The Duration.

I have had a few side effects, all of them non-problems.

I threw up each of my first few doses, but I did not feel sick, so I took another pill each of those times. My Doctor ordered more supply for me so I would not run out from losing an occasional dose that way. I switched to evening dosing and have since lost only one dose that way. Non-problem.

For about my first couple of months on Letrozole, I was more tired and required more napping. Non-problem.

About four hours after dosing, I feel rather warm for a short time. Non-problem.

About a year ago, shortly after my fourth surgery last year, I had a massive shed that substantially thinned my hair. Then my hair fallout rate reduced to a normal fallout rate. I do not know if the shed was from the Letrozole -- it might have been from stress and the surgeries. Either way, non-problem.

Some side effects have phased in and out periodically -- say, more for a few months; then much less, or nothing remarkable that way, for a few months. One has been some aching and stiffness along the outer side of one femur. When it gets to aching when I am down for resting, I just roll over, then it feels better. When there is stiffness there when I get up after some time down, some walking and stretching movements very shortly make it better. Non-problem. Another side effect that has phased in and out periodically is alternately feeling warmth and cold when I am down for resting at night. At those times I run the ceiling fan to cool myself, and I also use lightweight covers to warm myself -- then I can easily uncover myself to vent away excess heat until I get to feeling cold again. Non-problem.

A few months ago one of my toenails fell out. I noticed that it was tipped over sideways, and then when I handled it, it came out easily and painlessly. Before long, the leading edge of a new toenail showed up there. Non-problem. In fact, the loss of that toenail has been convenient. It was a littlest toenail. [Anyone else recall Roseanne Roseannadanna aptly comparing clippings of the littlest toenails to boomerangs?]

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4 hours ago - edited 4 hours ago by Icietla

Aug 24, 2017 11:26PM Icietla wrote:

Some side effects have phased in and out periodically -- say, more for a few months; then much less, or nothing remarkable that way, for a few months. One has been some aching and stiffness along the outer side of one femur. When it gets to aching when I am down for resting, I just roll over, then it feels better. When there is stiffness there when I get up after some time down, some walking and stretching movements very shortly make it better. Non-problem.
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Icietla writes:

I have not had that side effect at all since last summer.

At my most recent checkup, the Nurse told me that since I still have not had serious side effects, I am very unlikely to, so I can figure on taking the medicine for the long term.

I hope you are all doing great.

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Here is our discussion thread Doing Well On Aromatase Inhibitors (AIs)__

https://community.breastcancer.org/forum/78/topics/854403?page=1

MusicallyInclined

You sound like you have had quite the time over the past couple of years. Thank you for sharing all of this with me, I appreciate it. Hugs

Binney4

Hello, Music, and welcome!

I hear you on the frustration, and I'm looking forward with you to getting this all squared away with your next visit with you oncologist. Djmammo offered a great solution here--a PET would really give your doctors a way to visualize and solve the problem, and make it possible to offer you the best possible treatment while still keeping your risk of lymphedema low.

You might also want to check out other lymphedema risk-reduction strategies here:

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

Do, please, let us know what you discover.

Gentle hugs,
Binney

MusicallyInclined

Thank you Binny, I will 😊

MusicallyInclined

Hi All,

Well the Oncologist and Surgeon decided they want to go back in to get the lymph nodes, they were able to locate them on ultrasound so tomorrow I go in for surgery, they will put wires in several of the lymph nodes, take them out and get those to pathology. The Oncologist did an Onco test as well and I came in at a 26 which she indicated was intermediate high and higher than she was accustomed to seeing with ILC. Chemo has now been added to my list of things to do, I am not sure yet which kind or how many doses. I think the most frustrating part is not being able to plan anything although I keep trying. I have a conference in May that I would like to attend but do I schedule, can I go to a concert or should I be a hermit for fear of being in large crowds and catching something. I feel like my life is on hold until I get through the Chemo, is it?

Georgia1

Musically, this is the hardest part by far - so confusing and surreal! For now I think you should wait until you have the results on your lymph nodes. With lymph node involvement, yep, you're getting chemo as an unwanted present. But without lymph node involvement, I'd get a second opinion from another breast cancer center so you can understand how much the risk is really reduced with chemo over just radiation and anti-hormone pills. An oncotype score of 26 truly is intermediate.

Wishing you all the best for good results and soon.

MusicallyInclined

Thank you Georgia that sounds like good advice

NotVeryBrave

I would hold off on scheduling anything that's a commitment right now. You most likely won't need to be a hermit, but it would be a good idea to wait to make some plans until your plan of care is settled on. The specific type of chemo may have a number of known and predictable SE's, but everyone is different - you may do better or worse than the "average" patient.

MusicallyInclined

Thank you NotVeryBrave, I think those are wise words I will follow. Surgery completed they still didnt find any lymph nodes. Chemo is my next step they told me I will be getting Cytoxin and Taxotere 4 treatments over 3 months. Radiation and Hormone Therapy after that.