tubular carcinoma
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Hi again Briley,
I was also offered a double mastectomy due to my family history (as they didn't yet know my BRCA2+ status at my time of diagnosis). My cancer was very close to the chest wall apparently, so my rational for not having it done was that I felt with the cancer being so close to the chest wall and the type of cancer that Tubular is, with all the little branches, rather than a lump, I was worried that they may have missed some during my surgery and if they did a mastectomy, they would no longer be looking with ultrasound and or mammogram and the cancer could reoccur. If there is something going on, I want it found early and treated. Not left to spread. Also, my sister who had breast cancer at 37 (DCIS I believe) and was aggressively treated because of her age, had a lumpectomy, rads, and chemo had a reoccurance in both breasts just last year at 61 years of age. She opted to have a double mastectomy, and then take tamoxifen. She was planning on having immediate reconstruction but was told by the doctor about 2 days before the procedure that she needed to lose weight before they could do the reconstruction. She went ahead with the double mastectomy and I have to say is one of the unfortunate ones who has had to deal with several complications since her surgery. One of which is that she feels that the skin on her chest is too tight and pulls, causing pain. The other complication was blood clots that developed a short time after the surgery. I'm not sure if they were from the surgery or from the Tamoxifen, but she had to give herself very expensive injections in her abdomen daily, for months. She has recently seen a specialist about her chest skin tightness and he said it is a complication in about 10% of mastectomy procedures. He is going to do more surgery and recut the chest in a zig zag pattern to allow the tissue a bit more flexibility and so it is not so tight. Hopefully this gives her some relief. Anyway, if I had to have a mastectomy because my doctor tells me I need to I would, but I will not opt for it as a preventative measure. It is a major surgery and if lumpectomy and rads can take care of a problem, I will opt for this. Sorry to be telling you a bad scenario, but I think it is important to be informed of all possibilities... Regarding my not taking Tamoxifen, I have recently done some research on a drug called Metformin and have found that it reduces diseases of aging, type 2 diabetes as well as cancerous tumor growths...it has very minimal side effects, and is well tolerated by most people. They have done studies on Type 2 Diabetics who have taken it long term and have found that they live, on average 8 years longer than those who don't take it. There is currently a study happening in the UK to see if it actually allows people to live longer do to the fact that it does seem to prevent diseases of aging....including Parkinson's, dementia etc. So it's a long term gamble, but I'm trying it out. Time will tell lol.
grainne, regarding my grade 2 status, that is what was written on my diagnosis paper...that's all I know. My cancer was over 1cm. Large for slow growing Tubular...maybe that is why, I'm not sure.
On another note, I also have Irish heritage. My Great grandfather was born in Ireland... family name was Fitzpatrick! Luck of the Irish to you Briley...keep us posted on what you decide to do.
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is there anyone on here who has experienced side effects to sentinel node biopsy? From what I see almost all of you had clear sentinel nodes?Anyone who opted for lumpectomy only no radiation or tamoxifen?
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briley, i was lucky enough to have private medical insurance. I would happily have gone nhs but for the delay. When the local hospital rang me to make an appointment for a preliminary xray i was waiting outside the theatre in a clinic in belfast for a lumpectomy. My care was first rate, as is the followup. I had some difficulty in getting a lot of information, partly because i have no background in science and didn't know anyone with bc so i didn't know the right questions to ask. Initially, i think i was given info on a 'need to know' basis. I used this site a lot for info, having first scared myself witless on google. I asked my r.o., who was lovely, to show me my pathology report and go through it with me, which he did.
i had 1.3 dcis with 3 or 4 foca of pure tubular inside it. One of the margins was narrow so it was targeted with 3 radiation boosts in addition to the standard 15. I didn't think twice about rads or tamoxifen. As vor says above, I'm anxious to avoid a new primary in either breast which might be of a less favourable type. I see one of your options is a double mastectomy, which seems very drastic for tubular but i see you have family history and i understand you are thinking it will allow you peace of mind. My life is back to normal, which the exception of some pretty tolerable hot flushes. The side effect none of us can avoid is anxiety about recurrence, a new primary or mets. That is what i have found most difficult. Anything you can do to get reassurence is worth it
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hi vor... I don't believe so... I know she hasn't been tested.. I haven't told my family yet because I don't think they can handle it right now with my sister's first anniversary coming up soon.. I will at some point don't know when.. Still trying to come to terms with it myself!
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grainne... When you say that your RO went over your pathology report with u.. Are u talking about the pathology from the testing of the tumor after it was remove with lumpectomy or from just the biopsy? No one has mentioned to me about meeting with RO after lumpectomy
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isee.. What type of recon did your sister have... DIEP or implants? Was it the same cancer that reoccurred? She had rads and chemo and it still came back even though it was 20 yrs... Hate having to make these choices... It's confusing and overwhelming 😒 When they remove the tumor what tests do they perform and is that when I get the stats... My BS told me that they only do the oncotype dx when the nodes are clear not when they are positive?
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yes. I got very little info from the biopsy. I was told the size, that it was er positive and hat it was dcis/idc, ie, there was more dcis than idc. Talking to the bs before the lumpectomy he was very clear that he couldn't give me a clear prognosis until after he got the pathology report a week later. That was a long week. My phone lay on my desk like a hand grenade. I never took my eyes off it, waiting for the call. I went back to see the bs for the results. He was delighted to be able to tell me it was tubular. He said the chance of distant metastasis of tc is negligible. He put the chance of recurrence at 4-5%,cut to 1% by rads. It didn't occur to me to ask anymore... i didn't know there was anything else to ask. After coming on this site, i realised there was a lot of info i didn't have. I saw my ro for review after completing rads and he went through the path report with me then. I didn't even know there were different grades of dcis. One important thing i didn't know was that i have an increased risk of a new pjrimary bc in the untreated breast and tamoxifen significantly reduces that risk. I know some women with tubular look at the stats and the v v marginal benefit of tamoxifen or a.i.s and make an informed choice not to take them but just to be vigilant. One other thing: in the u.s. everyone gets an m.o. which seems to be a general cancer expert to coordinate care and followup. There is also a 6 month mammogram from diagnosis. We dont get either of those. I suppose i feel, therefore,as if i need to take a proactive approach.
I'm sorry you haven't been able to tell your family. I told.. ((and have still told) very few people but you do need even one or two friends. Having said that, it is really only posting anonymously on these boards that i have been able to reveal my pathetic neediness and know that it is understood. There are a number of really knowledgeable women posting on different boards as well.
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hi Kaneli, thanks for ur response... So u only had one node removed? That's good no side effects.. So far those who replied to me have little or no side effects which is reassuring considering everything else I read said the side effects could involve lymphadema, shoulder pain, numbing in the arm and fingers, easier to get infections, etc and they weren't talking about the axillary this was for the sentinel nodes... Did u have an MRI as well before lumpectomy and if so how large did that indicate? I had an MRI which indicated my tumor is 7mm so I'm hoping that's accurate enough since it is an MRI... I hear u guys a lot talking about stats that informed your decisions... Do u get those stats after the lumpectomy?
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Hi again Briley and everyone, FYI...I'm in Canada
My sister (who has also recently been found to have BRCA2+ like myself) had breast cancer the first time in about 1982 or 83, DCIS I believe. She was 37 years old as I mentioned. They treated her very aggressively with chemo and rads... only had a lumpectomy though. Last Oct. more breast cancer in the same side was found by mammogram IDC I think. They then did an MRI and found that she also had cancer in the other side, not sure what type. I am not sure what kind of reconstruction she was hoping to have...as I said earlier, at almost the last moment after she had decided on the double mastectomy, they told her she was not a candidate for any reconstruction until she lost some weight. I firmly believe that she is so overweight from the chemo she had at 37, and possibly is being affected by lymphodema in her legs, as they removed all her lymph nodes in the surgery when she was 37. So then they didn't do the surgery until about March...(Oh Canada)...and by this time one of her nodes was positive...and given that most if not all of her nodes had been removed when she was 37, who knows what the status of them would have been. She has had nothing but trouble since having the mastectomy...and I'm sorry to say this here as I don't like upsetting someone who may be in a similar situation, but I totally believe that we need to be truthful about treatments, consequences etc. We all have different experiences...some better than others. Knock on wood, I feel I was treated very quickly and very well personally. I have absolutely no complaints about my bc surgery or treatment. My surgeon was spectactular and the people at the Cancer Clinic I went to were amazing. The biggest challenge for me was having to have a second surgery to make sure that they had clear margins...which they didn't get with the first surgery...they didn't know this though due to the tubular cells. The tissue also had to be sent to another Cancer Clinic as it was a difficult diagnosis as I gather Tubular cells are difficult to distinguish from normal cells. The waiting was a killer. Also, even though I had a sentinal node biopsy and only 3 nodes were removed, I was told to try not to injure that arm or have blood tests etc. on that side. I should add that I think the reason my sister opted for the double mastectomy was because she had such a horrible experience with the Chemo back in the early 80's, that she absolutely refused it this time around. She did have Radiation however.0 -
Hi Briley, Yes, I did have an MRI before the Lumpectomy, after the biopsy. From Biopsy/ultrasound to lumpectomy, it was sized from about .5cm to .7 cm. I do think that after the MRI, they were saying closer to .65 cm. So it was still a little bigger upon excision, but not really a huge difference. With my cancer being tubular, and it being <1cm, my BS felt that 1 SNB was enough. I think that you get into bigger SEs, like lymphedema when a few nodes are removed. I honestly feel no residual effect from that 1 SNB so far! Good Luck!
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Hi Grainne, First of all, I do believe my Antrim McDonnells are from the Glens of Antrim. It sounds very familiar. Unfortunately, all of my father's siblings, parents, etc, are deceased. No cousins or anything like that, on my dad's side. It is interesting that, in the States, McDonnell is a rather uncommon name. McDonald is pretty common around here, but not the McDonnell spelling. I have gotten into debates with people about whether McDonnell is Irish or Scottish. Well, my maiden name is Kathleen Anne McDonnell, and you can be sure that I am on the green side of that discussion!
I am sorry that you have not felt that you could tell many people about your BC dx. I kept it to myself for....not too long. My sisters. my daughter, my boyfriend, my close friends, have been an encouraging rock for me. Aside from the fact that it is helpful to have someone to talk to, they also are a bit more understanding with regard to mood swings, and all of the emotional roller coaster rides I take. I was really scared to tell people at first, particularly my children and my boyfriend. They have hung in there with me, and I know it has not been easy for them at times. But at least they know what's going on with me. That being said, BCO has been a wonderful site for me, because, as fortunate as I feel to have the support of my loved ones, none of them has been through this. So I have their love, but I still need to reach out to places like this....also to not feel alone
Hey....We got this!!!
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hi, briley. I had 3 nodes removed, 2 sentinal and 1 palpable, with no ill effects whatsoever to date. I didn't get an m.r.i..The tumour was sized pretty accurately from the ultrasound, although the size of the invasive foca wasn't known until the path report was done. The bs gave me the stats i mentioned above at the same time. How are you doing? Are you any nearer a decision?
kaneli, you couldn't get more irish than that! You should google the glens of antrim. It really is beautiful. I did tell both colleagues and close family about my diagnosis but i felt very strongly that i wanted to control who knew and what they knew. I live in a small rural community where everyone's business is known instantly and i don't want the first thing anyone mentions or thinks of if my name comes up to be bc.
Isee, you as well! The irish diaspora really was significant. I'm feeling quite at home here now!
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briley, I'm wondering how you are getting on?
Kaneli, have you had your update with your bs?
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Hi Grainne, Thanks for checking on me!
I had my appt with my BS. Everything went great....she said it all looks normal on the mammo. I'm doing well on the Letrozole so far and when the nurse measured my arms to compare with pre lumpectomy, my arms have actually gotten smaller! I have been exercising, and have lost a few pounds but It felt great to see an actual difference on a measuring tape! She asked me how I felt about my different sized boobs, after the lumpectomy and I told her that I hated it....that I was so lopsided and I definitely do not look good braless....which I love to do if I have the right top, and when I'm hanging
around at home. She told me that my insurance would cover it, if I wanted to get a "lift" in the less perky one to even things out. I don't know why...I never even thought of doing that....not seriously, anyway! Well, I have met my deductible for insurance this year, and if I'm going to do it, it might as well be this year. So I made an appointment with a plastic surgeon she recommended for next week. I'm actually kind of excited! I'll see what's involved when I meet the plastic surgeon. She has done a lot of reconstructive breast surgery so I feel that I will gain more knowledge with the appointment. So we'll see! Hoe are you doing????I hope everyone else is doing well. I cannot believe that more that 6 months ago that I got the dreaded news....and the shock and fear and deep sadness....and it's almost 6 months since my lumpectomy and of course the ensuing brachytherapy (SAVI), which was worse than the surgery. I know that when I have these appointments now, which is a part my life now, and all bc patients and survivors lives, anxiety can get the better part of us. Well today was a good day for me and I feel encouraged. Who knows how tomorrow will go....and I'm still only 3 weeks into the Letrozole, so we will just have to see about that....but today was a good day!
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what a nice cheerful message to get! I've a checkup with my r.o. tomorrow iso I'm a bit anxious but not much. I'll write more tomorrow when it's over.
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hi. Saw the r.o. today and all is well. He poked around for lumps and bumps and lymph nodes and found nothing. I was talking to him generally about 'the new normal' and how really everything changes after you hear the diagnosis and about the 50% recurrence after 5 years for er+. He's quite a low key cautious man but he suggested that we tubular girls might let ourselves allow the world to slip back into focus and move on because our prognosis is so good. As for the 50%, he pointed out that 50% of a very small chance is a very very small chance indeed. I know recurrence is a lifelong risk but i do feel encouraged by his words.
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p.s., kaneli, i think the plastis surgery is a fantastic idea! I look forward to an update.
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Hello all:
Thanks for informing me that Invasive Tubular Carcinoma is not really a lump but a spider web formation. I did not know that.
Dear Kaneli: I had a breast reduction and a breast lift when I had my double lumpectomy for my bc surgery. I would highly recommend the plastic surgery. My breasts look absolutely gorgeous. I am completely satisfied with this surgery.
I would just ask your PS to make sure that s/he uses the terminology, "Medically Necessary" when s/he completes the insurance paperwork. I am saying this because my insurance company covered the surgery on my left breast (bc breast) but denied the coverage to my right breast. The insurance company said that I had "Cosmetic" surgery, and therefore, I had to cover the bill myself. I had to have the surgery because my doctor told me that if I did not have the breast reduction/lift at the time of my bc surgery, that I would be disfigured; that my breasts would be different sizes, and that my nipples would no longer be even. My doctors had to remove 12 cm of tissue in my double lx surgery.
After a long fight, my insurance company paid the bill. It is a law that insurance companies cover procedures so that women are not disfigured by bc surgery. Regardless, it was extremely stressful and difficult to fight my insurance company while also fighting cancer. The correct wording is "Medically Necessary". This may avoid potential insurance problems. Good luck.
Dear Briley and Isee: I am so sorry to hear about your sister's. Hugs to both of you.
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I found this link that shows a slide (40) of what it looks like under a microscope.
http://www.slideshare.net/kirubavijay/breast-carcinoma-pathology
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614....Thank you for telling me about the "Medically necessary" terminology! I called my insurance company and he said that insurance would cover it....but I definitely want to make sure I don't have to go through what you did to get it covered. I will be meticulous in covering all of the bases! I have my appointment tomorrow. Will let you know!
One of my closest friends is a Nurse Anesthesist (spelling?) Anyway, she looked me over
and said it would not really be a big deal to even them out....maybe a reduction in the unaffected breast, and a lift for both. She said, "Why not go for some perky 40 year old breasts?" Being 61, it sounds good to me! Thanks everyone else for the encouragement about reconstruction.
I'll let you know!
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I had my first mammogram since finishing my radiation treatments. I believe that all went well for I was not called back into the room for another test. I will meet with my RO on Monday to go over the results. I had a nice tech which helped for I have had experiences with bad tech over the years. So I am grateful that it went well and it is over.
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That sounds great! Let us know how you get on with the r.o. what a relief to get it over.
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Well, I saw the Plastic Surgeon today. I really liked her. She recommended a breast reduction in my right breast to make them even. Nothing for the left side. She does not like to reconstruct on the radiated side within one year from radiation. That's fine....I just want them to be even again. But I really have to think about this....It sounds like a lot more that I expected. I thought just a simple "lift" would do the trick, but apparently not. She said I would have drains (or a drain) and that I could expect to not work for about 2 weeks, and not lift or exercise that side of me for 6 weeks. I just don't know. Anyway, she is putting it in for a precertification and I will think long and hard about if I want to do it. My DH (He's my Dear Heart, since he's my boyfriend of 5 years, not my husband....who is not dear!) does not understand why I want to do it. I know he loves me and thinks I'm beautiful "just the way I am," and that's wonderful but.....I sure wish my breasts were the same size and symmetrical! So I'll take a few days to decide. I want to do it this year since I've met my deductible so I need to not take too long to decide! Any thoughts?
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i wouldn't be afraid of pain or discomfort that will pass, provided there is no additional risk. I am uneven, too, although the left is bigger than the right even though therre is a chunk out of it. My bs went in via the nipple, so there is almost no scarring, just the aasymmetry . He offered to even me up at the same time but my insurers wouldnt cover the cost. The thing is that i see that asymmetry every single time i shower, dress or undress, a reminder that is constantly in my face and inescapable. Maybe i will stop noticing it when more time has passed. I think it is a pity you feel under pressure of time because of your insurance. I have started to think of the post diagnosis readjustment as something like a grieving process and i know that received wisdom is that it's better not to make any major decisions for a year after a bereavement. Having said all the sensible stuff, i do feel a little wistful envy at the thought of a pair of perky boobs!! when the initial pain has passed, how good would that feel!!!
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Grainne, you nailed it when you said that every time you change clothes, shower, go braless, even around the house, and yes... make love, It's there. It's a reminder. And I guess you're right that the grieving process is still part of it all. I'm not worried about the pain. Not too thrilled about a drain, although I did have the SAVI balloon therapy for my rads and had 7 tubes hanging out of my breast for 10 days! It wasn't fun, but none of it's fun, so it's all relative. I was talking to my DH and he's totally supportive regarding my decision. He seems to get how I feel, even though he says he hardly notices. ...and I wonder, is my vanity getting the better of me? I have not heard back from the PS as to if insurance covers it so it may be a moot point. Anyway, I'll take a few days to really evaluate whether it's the best move for me. And I appreciate any feedback from my BCO friends. Even if we all have different dx, prognoses, treatments, etc...we still have all been affected by breast cancer. It helps to get viewpoints from other women who get it. So thank you!
Oh, and btw, I made the comment last time about my DH not being my husband, but my Dear Heart, my boyfriend. And that my husband was not so dear....I wanted to clarify that he is my ex-husband for the last 10 years. Just didn't want you to think I was talking about my boyfriend but that I was married! No judging anyway....just wanted you to know!
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hi, kaneli. I've been thinking about your dilemma. I recognise the thought that a further operation is about vanity. That's exactly what it is. You want to look better. But why not? Is there any reason why we should not be as vain as any other woman out there, rather than just skulking in the sidelines is a state of permanent gratitude for simply being alive?? If you think it will make you feel better, you go for it. Get your mojo back. Get your life back.
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I'm wondering how everyone else is getting on, especially Briley, and also Brightsocks... i hope all goes well tomorrow.
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Hi Grainne,
I had my first mamo last week all went well so far. Tomorrow I go to the RO to get all of the results. I had a great summer was very active and BC was not the first thing that I thought about. Do I see the world differently Yes! People seem different the days are different. Grateful and thankful are how I feel.
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brightsocks, you are right. I deleted my earlier post: i had a day when i just felt angry at having had bc and living with the conseqences. I went into work today and heard that a young woman of 36 with 4 young children, one barely a toddler, has died of b.c. She hardly got any time at all. I'm ashamed of myself for having given in to self pity instead of being , as you say, thankful and grateful.
How did you get on with the r.o.?
kaneli, dont worry about vanity. We are as entitled to care about how we look as anyone else. You go, girl!
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Grainne, Seeing the world differently means many things at different times. Sure I am very grateful but do I have my moments you bet! My world like all of us was either changed by a phone call or a face to face meeting with the health care system. I got the call a dinner time on my cell when I was in a meeting. I had to just act like the call was nothing. As for the rest of the meeting did I hear a single word??
So my update is all good news. My mammogram was clear. That will be the last time I will be in the office of my RO. My life file is now discharged to my family doctor. I will have a mammogram every year in September. I will see my surgeon in March for one last check. Every 6 months I will be going to my family doctor for a check. My RO was very impressed with the way the scar is healing. I have been going to athletic therapy for scar treatment and shoulder treatment. Before my treatment started I did go for a few IV vis C treatments.
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