Dis Breast Cancer Survivors Part IV - GAGWTA

[luvmarypoppins]

Janet - sorry to her about your dd partner. Wishing him all the best as he heals and recovers. So glad your other dd is finding something she loves and is passionate about.

Peg - wow that must have been scary with that news. Hope the house situation goes as smoothly as possible

Diana -congrats on the house. Hope the move goes smooth too.

Linda - my dh is coming up to your neck of the woods next week. Just for 2 days I think. Thurs and Fri, so I hope the weather is good.

Well right now ds1 has the flu, really bad. Ds3 took him to urgent care. He looks and sounds terrible. Cant eat, just wants to sleep etc. Ds3 gave me a mask to wear if I am near ds1.
Tomm. we are getting up to a foot of snow. Ds3 has to work so he will head in a few hours early if he can make it. I doubt he will be able to come home with the road situation. I told him to stay overnight at the hosp.

My cousins are not doing all that well emotionally. I am glad they are getting help. Well my one cousin refuses to. I did talk to him though. So sad. My heart breaks for them.

I have a break for about a month then next month its blood tests, sono and the dr. visit.

GAGWTA.

 

[The Mystery Machine]

It has been awhile since I posted on this thread. I believe at my last posting I had yet to travel back to the Mayo to see the liver specialist.

I went to Mayo AZ to see the liver specialist and while my liver is not in the best shape, (I have a lot of fat on my liver and my ducts are dilated), he believes that weight loss will bring my numbers in line. That remains to be seen since I have not lost weight yet. I am working on it though.

I am giving myself a few weeks to get going and then if I cannot get my numbers back down, I will see a lipid specialist. They did diagnose me with metabolic disorder which can give me a ticket into the lipid clinic. (My dh goes there.)

My yr anniversary was in January. I made the decision to change my oncologist and my breast surgeon. It was clear to me that after the lack of knowledge from many doctors, I needed fresh eyes. Another hospital here is always praised for their care and I just jumped in and went for it.

Well, get this one....I walk in, tell surgeon about my swelling and she says, oh you have, LYMPHATIC LEAKAGE. It used to be very common in the old days when they removed tons of nodes. Now it is rare so doctors do not know what it is. Mainly people are treated just for Lymphedema of a limb. Hopefully I get this under control, so I do not have that happen.

She stated she has other patients currently with this issue. They have swelling where it is not supposed to be in other words.

I am going to ask for the case studies (if there are any) so I can pass it on to my PCP, OBGYN, ETC...

Is she right? I REALLY hope so. I am going to go on from there and see if I can get better tests.

Bottom line, I went through tons of doctors who thought I was bananas, had no swelling, and on and on. The Mayo clinic insisted this was caused by STRESS.

 

[Pea-n-Me]

I'm glad you found a new team that hopefully can help you, TMM. I've had a similar experience on a much smaller scale recently seeing a bunch of different doctors and they're all sort of saying something different. It's frustrating. Hopefully this is the answer. I do remember people with those huge limbs that were still around when I first became a nurse. It's true, it's rarely seen today. And your swelling is more all over, right? It will be interesting to follow along to see how it goes. Best of luck to you.

 

[Dancind]

TMM, that sounds likely but what can they do about it? Bet it's my problem too, Never had my arm swell but my right side goes up and down, but never normal. My bras are 2 sizes bigger these days and that's after a unilateral mastectomy without reconstruction and weight loss.

Do you take Milk Thistle? I started taking it when my liver numbers were off one year and it's better. Couldn't hurt. It may be a cancer deterrent too. Can never get too many of those.

LMP, hope your family is healthier! DH is coming home from Portland today, went up for the inspection, told him do not come home with any bugs!

Smiley, how is your daughter's friend doing?

 

[The Mystery Machine]

Thank you for the responses. As far as what I can do? At the moment I am going to resume the Flexitouch pump. It is a pump specifically for lymphedema folks. Will it work for me? That remains to be seen.

Yes Pea, my swelling is all over my body. It has significantly reduced but it is still "there". My new breast surgeon said some people throw off lymph throughout their whole system when you mess with it. It is "lymphedema" but not the "large limb lymphedema". She said it was very common "back in the day" to have the reaction I am having. They were not as careful with node removal, as well as removing too many, and lymph fluid would leak out. I never got to a point of it being life threatening thank goodness! She said "my body is throwing off lymph all over in my system which causes swelling".

Dancind, will look into the milk thistle. Thanks. My numbers are off all over the place. goal is to lose 20lbs a little more aggressively than I like, however time matters here, so I have to do it. I am hoping to push some of my numbers down so I do NOT have to do a statin med for cholesterol. I am going to start taking fish oil and see what that does.

I passed the "Pizza Test" today. DH wanted to order pizza and I put my foot down. I am going to have a tuna sandwich and a banana instead. He wanted to get wings while I have a boatload of chicken to cook. Granted it is still a bit frozen, as it did not thaw out all the way yet but it is in an ice bath now. I told he has to grill them since it is 70 fricking degrees here today in MO on Feb 11th. Crazy weather.

Smiley, how is your daughter partner? That sounds awful.

Glad to see everyone.

 

[TheIncredibles!]

New here.

My mom was diagnosed at 51 with stage 4 breast cancer. No clue what kind - assuming IDC. She passed away at 54. She was the ONLY person in my entire history with any kind of cancer. I had a baseline at 37 then didn't go again till I was 45(2015). I was terrified but my 2015 mammogram matched my baseline so I was relieved. I mentioned a large lumpy firm area in my right breast that hurt when I ovulated and had my period and also felt firm on and off during my cycle but nothing was found in that mammo to indicate there was an issue there as everything looked good. WRONG!

Fast forward and this spot is still bothering me. It's not clearly defined, I have lumpy breasts to begin with so it just felt "normal" to me but then my husband noticed it. I was a few months late for my 2016 mammo so instead of waiting for the 2 year mark I just went it to get my script and off I went. In 18 months I went from Birads 1 Negatve to BIrads 4 Suspicious! 5.5 x 4.9 cm spiculated mass. Core biopsy done - Invasive ductal carcinoma grade 3, stage IIB(because of size, not attached to skin or chest wall) ER/PR+ Her-2 Neg. Local breast surgeon also did a node needle biopsy but missed the tissue. Met with local oncologist who wanted 16 weeks chemo one week on, one week off followed by surgery then radiation but I still needed further testing to see if there was node involvement which was going to make me stage III.

Ended up being flown out to CTCA in Zion IL on 02/13 (Diagnosed 02/03, got actual report on 02/07 - they moved quick!)and went home on 02/24! They did pet scans, MRI, nuclear scans, did a partial mastectomy with sentinel node biopsy on 02/22 and are calling me a Stage IIA. They redid that "suspicious" node biopsy before surgery and it came up negative, then did the nuclear scan to identify sentinel nodes etc and it was one of them so it came out anyway. So right now I am in the waiting stage of healing. I came home with two drains, one came out yesterday, this second one will hopefully be out by the end of the week. I fly back out to CTCA on March 27th and on the 28th I'll get my orders. Radiation for sure, possibly more surgery although they were comfortable with the margins they got but it's up to final testing and then I'll find out if I need chemo or not.

It's been a hell of a ride but something drove me to CTCA and they were wonderful. I have no idea what is going to happen and the next 4 weeks will pass slowly but hopefully I'll be back in fighting shape soon. My oldest child is graduating in June. I want to be at graduation hopefully healthy and with enough energy to throw him a hell of a party!

 

[Dancind]

TI, are you waiting on the Oncotype test? Fingers crossed for you. It's good that you listened to your own body and got tested! Stage IIA is way better than IIIB. And ER/PR+ often means no chemo since it doesn't add a lot of benefit and is so hard on the body.

I've had tender lumps since the last lumpectomy/radiation almost two years ago. It's time to go back for the six month check up and I'm dreading it.

 

[TheIncredibles!]

TI, are you waiting on the Oncotype test? Fingers crossed for you. It's good that you listened to your own body and got tested! Stage IIA is way better than IIIB. And ER/PR+ often means no chemo since it doesn't add a lot of benefit and is so hard on the body.

I've had tender lumps since the last lumpectomy/radiation almost two years ago. It's time to go back for the six month check up and I'm dreading it.

I think I got that back today with a bunch more which is slightly different than what I was told post op. Tumor was a bit smaller but but there was node involvement so still IIb Actually CTCA called me IIA at first it was my local Oncologist and surgeon that said I was IIB. Here's what pathology said. (I am being treated at CTCA so I can see results online as soon as they're posted.) Looks like I have no chance of avoiding chemo.

"
Final Diagnosis
A. right sentinel lymph node #1:- one lymph node, with micrometastatic carcinoma (0.3 mm in greatestdimension), detected by AE1/3 immunostain.

B. right seminal lymph node #2:- one lymph node, with isolated tumor cells (ITC), detected by AE1/3immunostain.

C. right sentinel lymph node #3:- one lymph node, negative for malignancy; AE1/3 immunostain performed.
D. right sentinel node clip: gross only (see gross description).

E. right breast Mass at 12:00, lumpectomy:

- invasive ductal carcinoma, Nottingham grade 3.

- Tumor size: 4.5 x 4.0 x 3.5 cm.

- patchy tumor necrosis present.

- surgical margins are free of tumor (closest margin: anterior, 7mm)

- please see synoptic report FOR STAGING.
Tumor

Histologic Type: Invasive mammary carcinoma of no special type (ductal,

not otherwise specified)

Histologic Grade (Nottingham Histologic Score)


Glandular (Acinar) / Tubular Differentiation: Score 3 (< 10% of tumor area


forming glandular / tubular structures)


Nuclear Pleomorphism: Score 2 (Cells larger than normal with open


vesicular nuclei, visible nucleoli, and moderate variability in both size and


shape)


Mitotic Rate: Score 3 (>=8 mitoses per mm2)


Overall Grade: Grade 3 (scores of 8 or 9)


Tumor Size: Size of Largest Invasive Carcinoma: 45 x 40 x 35 mm


Ductal Carcinoma In Situ (DCIS): No DCIS is present


Lobular Carcinoma In Situ (LCIS): Not identified


Tumor Extent


Macroscopic and Microscopic Extent of Tumor


Accessory Tumor Findings


Lymph-Vascular Invasion: Not identified


Dermal Lymph-Vascular Invasion: No skin present


Margins
Lymph Node Involvement: Lymph nodes are involved

Number of Lymph Nodes With Macrometastases (> 2 mm): 0

Number of Lymph Nodes With Micrometastases (> 0.2 mm to 2 mm and / or > 200
cells): 1


Number of Lymph Nodes with Isolated Tumor Cells (<= 0.2 mm and <= 200
cells): 1

Stage (pTNM)

Primary Tumor (Invasive Carcinoma) (pT): pT2: Tumor > 20 mm but <= 50 mm
in greatest dimension


Regional Lymph Nodes (pN)


Modifier: (sn): Only sentinel node(s) evaluated


Category (pN): pN1mi: Micrometastases (greater than 0.2 mm and / or more


than200 cells, but none greater than 2 mm)."

 

[TheIncredibles!]

ETA: This is on another page

Oncotype DX Breast Cancer Assay Results
Specimen: BREAST


Recurrence Score Result: 31




Please see original report from Oncotype DX.

 

[Dancind]

TI (share your first name?), so sorry to hear that. Once it gets to the nodes, they throw everything at it. I was lucky to escape that, even though both tumors were Luminal B because of a high mitosis score. My Oncotype was 25 the first time (I've done this twice), right in the middle and I elected no chemo for quality of life. PM me, I can send you some links where they talk about how to get through chemo without getting too sick. Sounds like that is where you are headed.

 

[The Mystery Machine]

Sorry to hear of your diagnosis TI. Hits you like a ton of bricks. HUGS!

 

[lovethattink]

TI, sorry to hear your diagnosis. Gentle hugs.

 

[The Mystery Machine]

I fly back out to CTCA on March 27th and on the 28th I'll get my orders. Radiation for sure, possibly more surgery although they were comfortable with the margins they got but it's up to final testing and then I'll find out if I need chemo or not.

It's been a hell of a ride but something drove me to CTCA and they were wonderful. I have no idea what is going to happen and the next 4 weeks will pass slowly but hopefully I'll be back in fighting shape soon. My oldest child is graduating in June. I want to be at graduation hopefully healthy and with enough energy to throw him a hell of a party!

My recommendation to you is to get a lymphedema sleeve for flying. I know I harp on this but it pisses me off that it is not a part of treatment. It only takes 1 time of a mishap and you can start lymphedema on your arm. (After you get surgery you are at stage 0 for lymphedema fyi.)

I know you are recovering and probably very overwhelmed at this time but I want to let you know this part of cancer treatment because as I have found some doctors either ignore it or do not know much about it AT ALL, to the point of scary.

 

[lovethattink]

My recommendation to you is to get a lymphedema sleeve for flying. I know I harp on this but it pisses me off that it is not a part of treatment. It only takes 1 time of a mishap and you can start lymphedema on your arm. (After you get surgery you are at stage 0 for lymphedema fyi.)

I know you are recovering and probably very overwhelmed at this time but I want to let you know this part of cancer treatment because as I have found some doctors either ignore it or do not know much about it AT ALL, to the point of scary.

I'm flying out this month and I have to wear a sleeve. I had to go to a lymphedema clinic back in December. I had very mild swelling. But my left arm is still a bit bigger around than the right. I was told to wear the sleeve during flight and 4 hours after.

 

[robinb]

I'm so sorry to hear about your diagnosis @TheIncredibles! . I am glad that you listened to your DH and your body and had you mammo done now instead of waiting.

 

[Pea-n-Me]

I agree with the sleeve. I had my first episode of lymphedema in my arm after flying and eating salty foods on vacation. You can just go buy it yourself, it doesn't have to be a big deal with insurance involvement and all that.

@TheIncredibles!, welcome to the club that none of us wants to join. Your case sounds very similar to mine in grade, stage, and lymph node status. I had two positive, as well. And fyi my diagnosis was in 2003 and here it is 2017 and I am doing well, knock on wood. I always liked to hear the good stories so I thought I'd offer you that! Hang in there! Glad you found us!

 

[luvmarypoppins]

Happy First Day of Spring ladies!

TheIncredibles! - welcome, but sorry you have to be here. The ladies here are so encouraging and a wealth of information. (I just hang out with them but I have thy ca) Wishing you all the best and glad you found a place you are happy with for your tretment

Peg and Diana - I suppose you are both in the midst of house closings and movings

TMM - hope your new team can get a good plan in place for you

Linda - can't believe your twins will have a year of college under their belts soon! Time flies!

smiley - hope your dd partner has recovered

robin - I told my ds I was rooting for the Badgers for march madness

Well after ds1 got the flu then dh got the flu. His was more a fever and terrible cough and tired. Then he got well and then he got really sick again and said his chest hurt. He refused to go back to urgent care but finally did and they took a chest xray and said he had pneumonia. They gave him a breathing treatment and lots of meds and he is better now but still has a residual cough at times which i dont like. He is leaving wed. for a week on the west coast and ds3 is tagging along. On the week end they are visiting his uncle who is 92.

Tomm. I am having the blood test and sono and then next week is my 6 month cancer check up. I cant believe I didnt get sick with all the germs that were around here but I am blessed with that for sure.

Hoping to go to WDW in May for 7 days, we shall see. Want to do a stay at the Swan and maybe 2 nights at the yacht or Beach Club. Thats all we can afford even with the ap discount as dh job is tenuous at best. His dept. got hit really hard with all the budget cuts announced, sigh. We shall see.

GAGWTA, hope everyone is doing well.

 

[TheIncredibles!]

TI (share your first name?), so sorry to hear that. Once it gets to the nodes, they throw everything at it. I was lucky to escape that, even though both tumors were Luminal B because of a high mitosis score. My Oncotype was 25 the first time (I've done this twice), right in the middle and I elected no chemo for quality of life. PM me, I can send you some links where they talk about how to get through chemo without getting too sick. Sounds like that is where you are headed.

Sorry It's Maryanne

Getting ready to go - have everything I think I could need for Chemo. Have my wig Some caps, bought some funky earrings etc. to wear with the caps so I can have some fun at least. I had dental work done, including oral surgery to remove 3 molars that needed root canals but could not be done in time. Now I am in a panic over the cold cap I was told it's available but I needed to make an appt the day before chemo for the fitting. We don't get to Chicago till 8 pm the day before! I have a meeting at 8 am (Infusion at 5 pm) with Survivorship for a bra fitting I am hoping they'll change that to a cold cap fitting appt instead as it's the same department. I just want to try and keep my hair.

This afternoon I am however getting it cut a little shorter, it's very long and thick, goes halfway down my back. I am getting it cut to shoulder length so when (if????) it falls out it might might not be such a shock. And I am having them put more pink in in. Not to the roots but it's my big FU to all of this - a 47 yo fat woman walking around with pink streaks in her hair - lol

 

[Pea-n-Me]

Sorry It's Maryanne

Getting ready to go - have everything I think I could need for Chemo. Have my wig Some caps, bought some funky earrings etc. to wear with the caps so I can have some fun at least. I had dental work done, including oral surgery to remove 3 molars that needed root canals but could not be done in time. Now I am in a panic over the cold cap I was told it's available but I needed to make an appt the day before chemo for the fitting. We don't get to Chicago till 8 pm the day before! I have a meeting at 8 am (Infusion at 5 pm) with Survivorship for a bra fitting I am hoping they'll change that to a cold cap fitting appt instead as it's the same department. I just want to try and keep my hair.

This afternoon I am however getting it cut a little shorter, it's very long and thick, goes halfway down my back. I am getting it cut to shoulder length so when (if????) it falls out it might might not be such a shock. And I am having them put more pink in in. Not to the roots but it's my big FU to all of this - a 47 yo fat woman walking around with pink streaks in her hair - lol

Good luck with everything. Keep us updated when you can, we'll be thinking of you!

 

[smiley_face2]

Good luck maryanne! I also had very long blonde hair, which all came out! I figured I would let the chemo get to every cell it could, just in case. It grew back really fast, a lot more curly than it was! a lot lighter too, in fact it was snow white, but has since gone to a very pale blonde again. I actually really enjoyed having no hair for a long time, at first I wore my wig all the time, toward the end, I just went without it and felt good. I am 6 and a halff years out from my diagnosis, had a very aggressive triple negative cancer which did come back on one of the margins in the scar tissue, but after the second surgery and radiation, so far so good. I am due next month for my checkup scans and blood work so fingers crossed!
LMP, yes daughters boyfriend is very much better! he was very lucky! I will keep you in my prayers for hubby's health!! and in so far as hubby's job....that is so very stressful! we are in the middle of refinancing our mortgage and waiting for the final department to approve, I actually thought it was done, then found out there was a 3rd department that had to approve as well. I literally can't sleep right now! it's been almost 3 weeks of paper work and meetings and such. I am not sure what we will do if it is not approved. Maybe sell. I have to keep reminding myself, I have survived cancer, and the loss of our dear son, this is only money. Our oldest daughter and her husband bought a house 2 and a half years ago, they did some minor work to it, painting and such, and just had a real estate evaluation, and if they sell, will make over $200,000 profit, that's how much prices have gone up here where we live. He said if he listed it for $500,000 it will sell in 30 days but if they list at $475,000 it will be gone next week. They don't know what to do! they really love the house, but there are a few different things they would like. I think if they are going to do it, they should do it now, while they are young! I would absolutely hate to move now, we have been here for 36 years! and we are just finally getting the house they way we want it.