Calling All with Tumors 6 cm +

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  • J-Bug
    J-Bug Member Posts: 626
    edited September 2012

    Thanks Shelley. I am sure it will all come together eventually. They did just take it from my front. I just for some reason, got a severely irritated rear end at the hospital. I kept asking them to readust the blanket I was sitting on because it felt wrinkled. One of the nurses thought that maybe with my super sensitive skin, I was having a reaction to their cleaning stuff. I don't know what it was, but it was so painful to have my rear bleeding and feeling very bruised, but being required to lay on my back. I mastered the art of eating and drinking completely on my back to keep the pressure off. : )

  • shells43
    shells43 Member Posts: 1,022
    edited September 2012

    Wow, that stinks. Maybe they dropped you during surgery. I've heard of weird things happening while you are under!

  • twistedsteel
    twistedsteel Member Posts: 156
    edited September 2012

    J-Bug, That sounds horrible. Did they take muscle too? or just skin down to the muscle? Can you stand straight? How is everything else going?

    I just got my Port out yesterday. They used local only. It went fine. Once the local wore off last night I was in pain so I took an Oxy left over from mx. I never took a single one for the mx, but a simple port removal, I did. Funny. I had the On-Q pain relief "ball of goodness" though after my mx. I know that made all the difference in the world.

    I went to a naturopath (they are licensed physicians in my state) to help me move beyond cancer treatment and rebuild my health. After talking for a while about health preceding the dx and since, he suspected I may have a couple of underlying issues that contributed to either the startup of tumor or growth of tumor, so he checked them out with blood tests.

    Long and short of it, I have a copper overload in my blood and a zinc deficiency. And I have hypercoagulation. The hypercoagulation is from fibrin(ogen) and thrombin to make my blood thick. And as a result, the blood vessels got lined with fibrin which, at the capillary level, is where the blood delivered cell nutrients go to the cells and where the blood removal of waste from the cells occurs. So the nutrient delivery and the waste removal are impeded. Lack of which from both sides contributes to a toxic-ish environment for cells. Now, understand, this is my understanding of what he explained to me, YMMV.

    So, I take a supplement to help the fibrin release from the blood vessels and injectable anticoagulant to thin the blood in the meantime and zinc to fix the deficiency and Vitamin C to help with another aspect of the blood thickness. I had to stop the anticoag's before the port removal surgery, and now will be starting them up again. It is a self administered shot twice a day.

    I now consider myself to have graduated from the Cancer Girl stage of my life and am moving on. Now I fix the damage done in treatment and keep on trucking. I still look back over the last 17 mo's and am stunned at how slowly they went, but how quickly they are gone. How I never thought I'd see the end and how happy I am when I truly leave the Cancer Thoughts behind, even though I still think about it, just not nearly as much.

    I would have to have DIEP if I do recon and I am just not up for another recovery period, yet. I am not sure what I will do. Now, I walk around the majority of the time, lopsided/flat. I wear prosthetic every so often. I forget about how I look and am surprised when I see someone staring. lol.

    I hope you all are making it through w some joy and happiness. J-Bug, I hope your butt heals up quickly. I was so sorry to read that Marybe from here passed on this week. She was an inspiration. I hate this fu***ng disease. Whether it's breast, colon, skin, liver, bone, prostate, lymph or whatever... it just sucks! We gotta stop it before it starts in people and cure it once it gets growing.

  • J-Bug
    J-Bug Member Posts: 626
    edited September 2012

    Geeze! I had not heard about Marybe. I am so tired of the losses!

    It's good to hear that you are finding some answers - Twisted Steel. I don't blame you for hesitating on reconstruction. I did. Now I am just finding this week that we have the most major family crisis ever coming up. I am concerned that I won't get through all the stages of finishing this. I just have to keep breathing deeply and taking the next step and the next...

    They did not take any muscle. I can stand straight for short periods of time. I just have to increase my activity and try to improve that.

    When I first got out of surgery, I was regretting my decision. I still am from time to time, but much less now. I have two relatives who were also acting like I shouldn't have done this. There is another who was giving me big speeches about needing to get it done 6 months ago back when the doctors wouldn't allow it yet. I am a little tired of overly opinionated people.

  • anafoefana
    anafoefana Member Posts: 164
    edited September 2012

    J-Bug,

    Sorry you are having a hard time.  I did not go this route as I had a lumpectomy, but would have if I had a mast. 

    I've finished my treatment, had my port removed in July and have been trying to get on with life. I had neo-adjuvant and was a good candidate for a lumpectomy even though my tumor was 7 cmm. I do not have large breast, but the mass was completely gone and I was fortunate to have clear margins and nodes. 

    I had radiation too. That part was easy, but I am feeling the effects of it still.  I ended up with a frozen shoulder and have been to PT for several weeks. It is helping, but don't know if I will regain full motion.  The area where I had radiation is very tender and having my first mammogram was the most painful experience since all this started. 

    I have not developed lymphedema. I am hoping I won't but I guess that can happen at any time. 

    Twistedsteel, you are so right. This disease stinks! Way to many people are affected and dying from it!  It is such a helpless feeling! 

  • shells43
    shells43 Member Posts: 1,022
    edited September 2012

    I really want a DIEP but am afraid of another surgery. I'm like you, TwistedSteel. I wear a prosthesis to work but go half-flat the rest of the time. I'm pretty comfortable with the way I look on the mast side. It's my 45 year old other droopy side is a real drag, ha. I have lost weight since all of this and I guess the fat that was there is lost. When I wear the foob, I just can't get a balanced look. I think with the surgery you end up with a lift or whatever is needed on the opposite side to balance.  Plus the tummy tuck would be an added bonus. My job is pretty tough though and I'm not sure I could miss enough work to fully recover.

  • shells43
    shells43 Member Posts: 1,022
    edited September 2012

    How are you doing J-Bug??

  • J-Bug
    J-Bug Member Posts: 626
    edited September 2012

    I am doing okay. I went to the doctor on Tuesday and he said that the area that is draining so much is not a seroma. It is the stitched area under the right breast (my radiated side) that has come loose. I have to go get it sewn back up as a day surgery next Wednesday.

    Meanwhile, I just keep taping down the diapers over the leaks. I have an adhesive sensitivity. I can't wait to be done with this part! I use Medipore tape but it still itches. At least I am not blistering and losing skin over it, like I do with other products! I imagine the healing will really speed up after getting that closed up again. I do have to come home with a new drain again though. That really bites after getting rid of six of them!

    I am trying to focus on doing a few household tasks each day and my online class work for grad school so that I don't get too caught up in this. This too shall pass!

  • shells43
    shells43 Member Posts: 1,022
    edited September 2012

    You are so brave! Keep up the good attitude! Who thought of the diapers?? Funny. Bet it works though. Take it easy with the household tasks while you can ;)

  • geewhiz
    geewhiz Member Posts: 1,439
    edited September 2012

    J-Bug...let's heave-ho our drain pain together into the fire. I have 2 new ones, and boy oh boy am I ready to burn melt them in those flames!!

  • J-Bug
    J-Bug Member Posts: 626
    edited September 2012

    Surgery went really well yesterday! The PS agreed that things had opened up more on the right (my radiated side) and also on my left significantly. He sewed things back down really well with a different thread, not the dissolving stuff, but some very firm external stitches. It feels a lot better already, but maybe that's the pain meds talking. : )

    Also, I had been talking with PS about the bloating and he said that that is not bloating, that is my body under that layer of fat that he removed. I debated back that I cannot wear any of my old clothes, even my pants from days when I was heavier - that I had lost quite a bit from surgery, but nothing fits. I showed him how my lower abdomen was slightly warm and red. He checked it out during surgery and was able to aspirate over 300 cc of fluid. It may be the pain meds talking again, but I don't feel any pain in my abdomen or pelvic floor now! He said we will remove more at next week's appointment when I will be in a better position for it. At the time I was in surgery, so he was forced to work with my laying down. Something about sitting up is supposed to be better - I believe he said.

    So, I anticipate a couple days of pain meds and then back to getting functional. I get to shower in 48 hours again!! (I had to stop when everything opened up.) I am really excited about yesterday's progress!

  • shells43
    shells43 Member Posts: 1,022
    edited September 2012

    How are you feeling today, J-Bug? I just saw your post. Sounds like you are on the mend now with the fluid drained and everything all stitched up again! Wow, what a  pain. I hope they will listen to you more now. Still makes me reel when I think about having another surgery. Please let me know when you are all done if the results are worth it. Enjoy the pain meds....:)

  • shells43
    shells43 Member Posts: 1,022
    edited September 2012

    I've also been wondering if anyone else in our big tumor class did NOT get any scans? I have asked by my onc says no. I think this is because my nodes were negative. What if something slipped through? I know some people with other oncs (not mine) that have gotten PET scans with little tumors.

  • lago
    lago Member Posts: 17,186
    edited September 2012
    Shells I think one of the reasons why I got scans was because I was HER2+. Lots of HER2+ have mets even though no nodes, granted it's not a common to be HER2+ with a tumor as big as mine and be node negative. My onc thought for sure I would have micromets… maybe the other reason why he orders scans.
  • ridergirl
    ridergirl Member Posts: 443
    edited September 2012

    I've had a CT and bone scan since my dx. What i' m curious about is how long i'll have to wait before they can tell if the tamoxifen is working? Anybody have any thoughts?

  • ridergirl
    ridergirl Member Posts: 443
    edited September 2012

    I've had a CT and bone scan since my dx. What i' m curious about is how long i'll have to wait before they can tell if the tamoxifen is working? Anybody have any thoughts?

  • lago
    lago Member Posts: 17,186
    edited September 2012

    ridergirl I would ask your onc. I would also post on the stage IV threads. These ladies have been through it. I don't know how often they scan folks with mets.

    BTW I did get my 3rd liver scan PFC. Should find out Monday if they are going to stop. There were some lesions that they believe are cysts but my onc wants to be sure.

  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2012

    I checked in with a 10 by 10 cm lump. Once they operated they changed their mind and said the whole breast was affected and tethered to the chest wall.Chemo, rads first then surgery. Of course the nodes came out although they were thought to be non cancerous. 5 -6 years I received breast cancers little dirty secret. Lymphedema. Please get arm measurements taken before surgery and watch for even a swelling of a cm difference in your arm. Best if you can catch it early like I did. In fact do yourself a favor and have a MLD massage monthly to clear out any stagnent fluids that may be building up after surgery if you had even one node out.



    See the Lymphedema thread if you have questions and post. Some girls on that thread created a website that is the best. Google stepupspeakout lymphedema

    We are are here to help you and best of all educate you.



    You may have a doctor in denial that will say, you will never get Lymphedema, Mine did and laughed when he said it!

    Most docs only spend an afternoon learning about the lymph system.

    I am not here to scare you silly. Just wanting my BC sisters to be informed. We got to look after each other!



    I am well managed and have been Ned since 2004. Yeah!

  • J-Bug
    J-Bug Member Posts: 626
    edited September 2012

    shells43: I am doing much better now. Thank you for asking. I received a new drain with the 2nd surgery. I was using a cane to get around because I had so much pain and pressure in the abdomen from all the excess fluid. As soon as the PS drained the fluid during surgery, I felt like a new person! No more cane. I have stitches everywhere! They make me sore but the new breasts feel so much better supported now. I am starting to feel like I might not regret this someday now...

  • shells43
    shells43 Member Posts: 1,022
    edited September 2012

    Oh I'm so glad for you Jbug, I wish you continued healing and strength. It's such a lot our poor bodies have been through. Gentle hugs!

  • twistedsteel
    twistedsteel Member Posts: 156
    edited September 2012

    I am sooo happy for you J-Bug. It sounds like you have really turned the corner on it all.

    YAY! 

  • anafoefana
    anafoefana Member Posts: 164
    edited October 2012

    J-Bug,

    You have been through a lot and it is good to hear that things are getting better. 

  • stride
    stride Member Posts: 470
    edited October 2012

    Hello, looks like this thread has not been very active lately, so I'm hoping to give it a bump. I read all of the posts from the beginning.

    I left my tumor size out of my diagnosis because I do not really know what to say. I am an A cup, and easily discovered a large, fast-growing lump in April. It was a roughly 2cm tumor, and had an attached cyst about the same size that collapsed during a later needle biopsy. My BS put the tumor at 4.5cm by ultrasound measurement a couple of weeks later. By the time I started neoadjuvant TAC in June, my MO said the tumor was 7.5cm, but that was not an ultrasound measurement.

    The tumor shrunk significantly during my first 2 rounds of chemo. My BS and MO examined me after the third round and pegged it at 2.5cm. I told them I thought it had stopped shrinking by then and might even be growing, but my BS was pleased by the response to the chemo and thought it would shrink more. So I am scheduled for a lumpectomy and radiaion. I am having an MRI later this week and will meet with my BS next week.

    I think the tumor is at least 2.5cm still, probably more. I am so small-breasted that the tumor is large enough to be somewhat disfiguring, and I am constantly aware of it. I think I will probably need some sort of reconstruction even with a lumpectomy, and am trying to figure out my options. I am also questioning whether I should just have a mastectomy and skip radiation, but the lumpectomy has been scheduled for weeks and I am reluctant to change paths mid-stream. My MO said the BS would not be planning a lumpectomy if she did not think she could get it, which makes sense. 

    Anyway, that was long-winded. But I'm hoping more people will post to this thread, because I think it's a good one to keep going.

  • Lillymillie
    Lillymillie Member Posts: 192
    edited October 2012

    Have read this thread with interest too. I was originally diagnosed with 2 tumors but after mx pathology report showed they were joined a thread so they measured it at 9cm. I'm only an a-b cup but we got good clear margins. I'm in the UK and I did FEC-T chemo after mx. We seem to get radiation as standard here. Have not heard of anyone who can skip it even with mx. I got 3 fields, mx site, chest wall and collarbone nodes done. Hardly any side effects and painless.

    Meeting BS next week to discuss recon options, getting both reconstructed-reading threads to see what others have decided on.

  • shells43
    shells43 Member Posts: 1,022
    edited October 2012

    Hi Ladies, welcome to our big world. My tumor grew fast as well, I think I could feel it changing a little every day, especially after the biopsy. Lilly, I had FEC-T also. Both parts were rough in their own way. Hopefully it did the trick!

    Stride, I think if they get in there and can't do a good job with the lumpectomy they will do the mastectomy instead. You should ask and that way you will know if that is possible. You don't want to wake up surprised.

    Hugs, Sisters!

  • stride
    stride Member Posts: 470
    edited October 2012

    Got confirmation today via ultrasound that the tumor has been growing. From 2.5cm in third round of chemo to 3.6cm now. Still, I think the chemo was effective systemically because my lymph nodes have shrunk. And the tumor is about half what it was at peak. I am meeting with the breast surgeon on Monday, but I would imagine I'll have to have a mastectomy now.

    I'm surprised about FEC-T, haven't run into many people getting that. Do you know why they selected tht regimen? Shells, did you have it before or after surgery?

  • shells43
    shells43 Member Posts: 1,022
    edited October 2012

    Hi Stride, I had FEC-T after surgery. My tumor was almost 10 cm in two directions (9.4 x 9.7 x 4.5 cm) according to the pathology report. My oncologist said he was giving me a chemo for stage 3 cancer even though technically I was 2b with no positive nodes. A friend who was dx'd about 6 months after me and who actually was Stage 3 got the TAC regimen from the same onc. It was around the time that there were some drug shortages so maybe that was not his first choice. Many of us had FEC-T though and we had an active forum for awhile with those of us going through it together.

  • flannelette
    flannelette Member Posts: 984
    edited October 2012

    I had 6 rounds of FEC in 2008 after my MX. then radiation. More recently, people seem to be getting FEC-T, 3 of each. Guess it must get better results than 6 FEC. My tumor was so gimungus that we just went straight to MX, or maybe then they weren't even doing neoadjuvant chemo first. I imagine the cocktail is determined by specific cellular activity - I had a very aggressive fast-growing tumor. Lilly at stage 3a you get radiation too, I did too even at stage 2b. Was thankful for all treatments, the more the better, for me. Canadian drs seem to be in tune with those in the UK so we get the same approach, I believe.

  • shells43
    shells43 Member Posts: 1,022
    edited October 2012

    Hey Flannelette! How are you doing, girlfriend?

  • flannelette
    flannelette Member Posts: 984
    edited October 2012

    Hi Shells just fine. Busy as a bee. Only hitch was this spring my annual mammo showed a new lymph node in the axilla. well, here, they don't beat around the bush, if you're in a br ca centre. Friggin thing was 1.2 rather than the acceptable 1 cm. On to breast something else - MRI? well, another friggin node 1.5 cm. On to fine needle aspiration biopsy. Nothing. Sooooo - on to every test in the book, like looking for a needle in a haystack. complete bone scan including both sides of my cranium and my fingers! enhanced breast MRI complete with an IV injecting a chemical to make sure everything to be seen could be seen. Brast clear as a bell. US on abdomen/pelvis. CT scan. and the grand finale 6 nodes out (all this happening on my"good" side) and dissected. Nope. Not one bc cell could they find. Yea!!!! I've been all checked out, something they never do unless you present with a symptom (my 1.2 cm node).

    This all went on for ages. But all the drs agreed, the node could be fighting something else. Like my rash from HELL I had last winter.

    I wasn't too stressed(except for when the mammo people called back and I went hysterical) as almost from the beginning I brought up the idea to my b surgeon and he said sure, anything could cause it. thnkful they took such good care of me, though, and so very thankful no bc. whew!

    Sorry to blab on, I can never make it short.Wink

    Take care

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