DCIS AND RADIOTHERAPY
It is a week since my wide local excision of my DCIS and am feeling better althrough I had a large hematoema undeneath my breast... I received great pathology results from my surgeon on Tuesday that my margins were 100% clear, in fact, there was no cancer cells present at all (they were all removed during biopsy as the DCIS was so tiny... My surgeon suggested I did not need radiation but asked me to see a Radiation Oncologist for another opinion... I saw her today and she has told me that based on everything, she doesn't think I need radiation... I was really happy, but also a little worried that it increases my risk of this returning.. She also told me that I had Intermediate to High Grade DCIS and it is hormone receptive... My surgeon and the Radiation Oncologist both suggested I see another Oncologist to discuss Tamoxifen, etc but are both not 100% convinced that I need it either but it something I can consider... I am feeling really confused.... I sort of just want the doctors to TELL me what I need, rather than make these decisions myself... They are being mindful that I am only 40 years old and that the extra treatments may have a larger impact on my life, when they may not be needed at all... They are all wonderful Drs here on the Gold Coast but I'm just feeling very anxious that by doing less treatments now can put me into a higher risk category of facing all of this all over again?? Am I needlessly worrying? Should I just be happy that my DCIS was so small and completely removed and just get on with life?? Has anyone else had a higher grade DCIS and not done any radiation treatment? So sorry for all of the questions x
Has anyone decided to have their ovaries removed rather than be on Tamoxifen?
I am not handling Tamoxifen very well and have made an appointment with the medical oncologist to discuss having my ovaries removed instead. I've already had a hysterectomy so no issues there. Has anyone decided to go down this avenue rather than be on hormone blocking therapy? I understand that estrogen can stay in the fat cells for a length of time.
DCIS and endometriosis- HELP!!
Hi everyone, totally new to this amazing network and this whole new world of cancer & DCIS! I am looking for advice to to hear from ANYONE who may have been through something similar to what I am going through. two months ago I found a lump in my right breast and the GP sent me off to the experts. Biopsy’s, ultrasounds, MRIs, mammograms later it’s DCIS. I am run through the options and go into for a wide local. During this surgery they find a 0.8m tumor and remove and take wider margins. However they do not come back clear, so the following week I go back in for some more “housekeeping” and wider margins. I was told yesterday that those margins are clear, hooray! The direction now is that they want to do 5 weeks of radiation and put me on Tamoxifen for 5-10 years. HOWEVER, I have endometriosis and have been told tamoxifen will heighten my endometriosis. Along with the standard early menopause (should say I am 39 years old with one kid, happy with one child, based in Newcastle NSW). As this has already been such a whirlwind, I am trying to find resources or people who have had to go into early menopause - did you get endo side effects? Or if you already had endo, did you opt to have your ovaries etc removed to stop any side effects/pain? Or did you opt for a mastectomy instead? Soooo many questions! I am discussing with all doctors and specialists but haven’t ever spoken to another person in my position. Please PM me or comment if you want to share your experience thanks for listening 😊
Question on Tamoxifen vs Zoladex and Exemestane. Does this s**t ever end?
Hi everyone, This is my first posting here. I have read and gained so much from the many postings, wisdom and inspiration from everyone on this forum and for that I have to say thankyou. The information contained within this network, I believe, far outways what most doctors can tell you. I guess that's because they really don't involve a lot of the emotional side of the treatments and how that effects every aspect of your life for so long. So I am eight months into the battle after being diagnosed with stage 2 invasive carcinoma (of no particular sort aparently) + DCIS with 5 of 24 lymph nodes positive ER/PR + HER2neg. I've had lumpectomy, re excision to gain clearer margins, 4x AC and 12 paclitaxol (manged to keep my hair thanks to cold capping YAY!) and am on number 14 of 30 sessions of radiation. So my question is: Saw my oncologist the other week who, up until then, had only ever mentioned doing 10 years (OMG) of Tamoxifen after everything else is finished. Then on my last visit decides that Zoladex monthly injection and exemestane tablets for 5 years is the way to go although he couldn't really tell me the success rate of one verse the other. You should get a laugh out of this.......(my Dr is Indian and sometimes things get a little lost in translation) So with a big smile on his face claims the Zoladex will "castrate" me and would be the best option..............wow......if I hadn't nearly fallen off my chair laughing I would have burst in to tears (which I did as soon as I left his office). Has anyone had any experience with this combination? Seriously, I am already getting 20 -30 hot flushes a day, wake up 5-10 times a night due to overheating along with all the other usual things your body does when suprisingly has all its female hormones shut down unexpectedly. There seems no end to treatment. I would be keen to also hear if anyone knows any natural ways to lower estrogen as an alternative to years of hormone blockers? Thanks for listnening.oncodx
My oncologist mentioned a test called OncoDX which can be used for cases such as mine. I had a stage 2 invasive breast carcinoma, sentinel nodes were negative and ER positive. I've had a double mastectomy and onclologist has suggested I go on Tamoxifen therapy, but I may also get a further reduction in recurrence if I have chemotherapy. The benefit of chemo is small (1-3% reduction). The OncoDX test can determine the likelyhood of my cancer recurring. Therefore, if the recurrance is low, then chemo will be of no benefit. The test costs $4000 and is only available in the US. Has anyone else been in this situation? Would like to hear of other people's experience.
Tamoxifen
I have just received my script for Tamoxifen and filled it but am after some advice before I commence. I had a lumpectomy 2 and a half months ago and last week completed 5 weeks of radiation. I am still getting a lot of nerve pain and feeling quite fatigued from the radiation and have been advised that it could last for a few weeks yet. Should I wait until I'm feeling a bit less tired before commencing my medication and can you start on Tamoxifen gradually? I'm worried about the side effects and really just can't deal with them at the moment. Thanks Shell :)
Hot flushes and other stuff:)
Hello ladies! Just a quick update on where I am in my 'journey'. I had some light spotting a couple of months ago,and because I am post menopausal,and on Tamoxifen,I had a biopsy.They didn't get enough tissue,so now I am having to have a hysteroscopy and D & C, just to make sure everything is ok. I am pretty sure it will be, but this will be a good way of telling how things are going, so if there are changes in the future,they will know by how much. My other thing,that is driving me nuts,are my hot flushes.They seem to be getting worse,so I decided to keep a record of when I get them,and see if there is a pattern.Would you believe,they start about an hour after I get up in the morning.They happen about every hour,all day,with about a 3 hour break in the afternoon,between 1 and 4. Then they wake me about 3 times each night.I am going to start taking my Tamoxifen in the morning,and see if it makes any difference.I know there are medications that you can take,but I really don't want to go down that path if I don't have to. Anyway,that is my update and my whinge!! I hope everyone is doing as well as they can be. Cheers xox Robyn
Arm Exercise after BC and Reconstruction
Hi to all and well wishes to you all this my first blog - i have got through it diagnosis thru to bi lateral mastectomy and reconstruction. I am on Tamoxifin and have healed. Now I have been told just gentle arm exercises no weights no swimming no anything that may cause the inplant to move out under my arms just cardio and this is forever! Just cardio exercise. I would love to hear from gorgeous ladies who having gone through the dark tunnel have had the under the muscle breast inplants what do you do for upperbody workouts and bat wing arms to be truthfull. I have no strength due to all the Ops etc and immobility but am raring to go now and want to know what I CAN DO going forward. Is Pilates safe for instance.? I see Dragon boat ladies and I know they must all have a story either their own or that of a friend but they are rowing ? I welcome any thoughts or experiences lovely ladies x Coldcapper
