Looking to connect with others for support and guidance
Looking to connect with others who have had a second primary breast cancer.
First diagnosis was in 2016, found on a routine mammogram. I was 43 at that time Stage 1A no nodal involvement, oncotype 7 had lumpectomy, radiation and 5 years of Tamoxifen. I had a young family at the time and kept it from my youngest as he was only 4.
It took a huge toll on me mentally and I almost ended up on antidepressants, filled the prescription but never took them. I know I was extremely hard to live with as I was in. very dark place. Had 6 months off of work mainly because my stress was overwhelming.
Two of my children are now adults, one leaves home next year but my youngest is 12 and is very much a mamas boy and feels everything to his core. Not sure how as a family we can deal with this. Feel so sad and guilty to put them all through this again.
Fast forward 8 years, annual mammogram showed focal asymmetry and diagnostic work up showed spiculated mass with a large area of architectural distortion. Can’t believe it, angry, sad, confused, scared. Concerned this will be a much worse pathology. Felt somewhat fortunate last time that I got away lightly in comparison to many others. Kicking myself I didn’t have a prophylactic bilateral mastectomy as I was on the fence about it for a few years but just couldn’t bring myself to do it.
Not sure how to get my head around it all so I can live each day with some joy. We leave for a family vacation 3 days after my biopsy. I fear how I can make this vacation a happy one as my anxiety and sense of doom is overpowering.
Needed to vent in a safe place.
Comments
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Hi @lavenderskies -
Really sorry to hear that you find yourself back here again.
It's quite a shock to be dealing with all of this a 2nd time isn't it? It sounds like you don't actually know for sure that it is a malignancy yet. Take it one step at a time. Do the biopsy and go off and have a wonderful family vacation. You can't change it by worry. If it is b.c., you may have found it early enough again to have it be very treatable. Nothing to feel guilty about! You didn't choose this…it just 'happened' to you as it has happened to all of us.
You've done this before. You WILL get though this again.
Take care.
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I’m so sorry you’re going through this again.
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@mandy23 yes a huge shock. I am sorry you had to go through it twice too. I hope you don’t mind me asking but how did you cope with it all a second time? Did you find it easier the second time around or harder? Did you find it hard to choose between a MX or lumpectomy? If you have any guidance on how to navigate all of this I would really appreciate your thoughts.
You are right in saying I don’t know for sure that it is malignant as yet but with a spiculated mass and architectural distortion it sounds extremely likely. Statistically a spiculated mass has a very high chance of malignancy around 90%. Ugh! I was given a Bi-Rads 4b which is a surprise as given the spiculation I would have thought it would have been higher but it does’t change anything I know. I just like to understand rationales!
I am also questioning why I was not monitored using breast tomosynthesis since my last diagnosis as this may have picked up this second area way before now. My routine mammo showed a focal asymmetry and it was the tomosynthesis that showed the mass and AD. This area could have been growing for years and I knew nothing about it. I am feeling extremely frustrated with the whole process.
Yes I am going to try and have the best vacation with my family, going to do my best to try and put this to one side for that time as you are right in saying that I can’t change the outcome so no point in wasting time worrying about it. I just need to get my mind on the right track!
Thank you for listening.
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Hi @lavenderskies -
Unfortunately, b.c. doesn't seem very straight-forward even with imaging options. Maybe some day….
I had 2 biopsies 10 months apart before mine was dxd the 2nd time. The 1st biopsy, the radiologist didn't believe the results and was concerned since it was difficult to get to (mri biopsy), that maybe she had 'missed it'? She wanted to go back and do it again. Unfortunately, she was retiring and was over ruled by a different radiologist who I was not too happy with…who said we should 'watch and wait'. 10 months later, it had grown, so they knew they needed to do another biopsy, which of course was malignant. Grrrrr. My breast surgeon was livid and apparently called them out on it. At some point, there's nothing you can do about the woulda shoulda couldas and you just deal with where you are at.
I have no regrets that I didn't choose a bilateral mx the first time. Once you make a decision, it is the RIGHT decision for you. You follow your gut. Once I was dxd the 2nd time, there was no question in my mind that I wanted a mx. I was glad that my breast surgeon agreed. In my case, the tumor was pretty deep in the breast, so she said the lumpectomy was possible, but would be more difficult. It didn't matter. I decided that if it happened twice, I wanted to do what I could to not be doing this yet again a 3rd time.
I think once I got my treatment plan and started working through it, the 2nd time was easier to get my head around just because I knew what I had done the 1st time. Of course, the 2nd time I had to have chemo, which wasn't needed the 1st time and that was definitely more difficult. I had issues with it, but I got through it. Everyone is different. My brother happened to have a different cancer and went through chemo shortly after I did. He skated through it with no issues, working the whole time except the treatment day! I couldn't believe it after I had had days I couldn't get off the couch! 😮
Come here and vent all you like. That's why we're here. You've GOT THIS! REALLY!
When's the biopsy? Where's the vacation to?
Take Care.
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@mandy23 thank you for your reply and your insights and information. Certainly sounds as if you have had a tough time going through the process of getting that second diagnosis. So hard.
My biopsy is Aug 8. We are headed to the US for our vacation, I live in Canada. I don’t want a phone call with my results whilst I am away as this is highly unlikely to be benign so best to enjoy my vacation and then get results when I get home. I am struggling though with feeling that my vacation is going to be ruined, my mind is racing with all scenarios, but I need to move past that I know. I don’t know anything for sure yet so makes sense to breathe and put it aside for now. Hopefully I can do that as it’s not worth wasting my energy and mind on it as of now.
The thought of chemo terrifies me. The one thing that I am scared of the most is hair loss, how did you manage with that? I was hoping to keep everything to a minimum disruption to my life, I love my job, I work part-time and would love to continue to work, but I work 12 hour days so not sure how viable that would be. I too like to lead a fairly private life as much as possible and hate everyone knowing my business but I guess I am not going to be able to hide this! I am I know jumping ahead but that’s the way I roll I guess! How long does it take to complete chemo? I literally no nothing about it at all.
Did you find it hard to cope with having the mastectomies even though you were confident in your choice? Mentally I am concerned about that, the surgery I am not worried about. I am leaning towards bilateral as I don’t think I can face the risk of another primary and don’t want rads again but I am aware that sometimes that is needed even after a mastectomy. Last time they steered me to a lumpectomy but my previous surgeon did agree to do a bilateral mastectomy if I wanted one prophylactically. Unfortunately he has retired now which is a shame as I really liked him and felt confident in his abilities.
If you don’t mind sharing, how old were you when you went through chemo? I feel I am healthy and have no other history of any illnesses so hopefully that is in my favour.
Thank you for your continued support and advice and insights. Makes such a difference to me. Thank you for telling me I have got this, gives me encouragement and I know I will get through once I have processed the anger and sadness of it all.
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10 years ago I went through the whole process….lumpectomy, year-long chemo (hair loss etc) and radiation. Today, on my routine mammo, I could see the linear calcifications in my other breast (I always look at the images at my mammos). Sure enough, the results were posted before I made it home. They want more images. This is how it started for me 10 years ago. Lavenderskies, I hear you, girl. We're going to walk through this one step at a time.
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@hikingandhorses so sorry you find yourself having to have further imaging, totally sucks to say the least. I truly hope you can get the imaging done soon and you are given the all clear. I am beside you and yes we will both walk this through this one step at a time as we have to. I am always several steps ahead in my thought processes and always feel I am headed in the wrong direction! However I am trying not to get ahead of myself and only worry about the things I definitely know, although that is hard but it is a work in progress! Hugs to you. Please keep me posted on how you get on. Always here if you need to vent.
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The one thing being dxd 'gives' us is a better understanding that each day is precious and we need to find enjoyment in the days that we do have….however long or short they may be. So, do try and enjoy your vacation!
I was 66 when I was dxd the 2nd time and went through chemo. I also consider myself pretty healthy otherwise. It also terrified me, but I got through it. It really varies how long it will be depending on the tumor, its biology and the treatment needed. In the U.S. they now use Oncotype testing to determine whether or not you need chemo and it has allowed more people to be able to avoid it if the biology of their tumors indicate it. I wasn't so fortunate this time mostly due to it being grade 3 and a few other things. I don't know if they are using Oncotype in Canada? You may want to ask about it.
The hair thing is hard, no doubt about it. I did do Cold-Capping, but still lost about 50% of my hair. In the U.S. this usually isn't covered by insurance and the out of pocket cost is pretty high, so it is probably not as widely used as it might otherwise be. It also means you end up having to stay longer at the treatment center with the cap on and that can get to be old depending on how many treatments you need. I used many different types of head coverings to find what I liked best. If I had to do it over again, I would probably buy a wig in the beginning, especially if I was still working…which I'm not…I'm retired. But everyone is different and some people hate wigs. BUT….this is way ahead of yourself….you don't even know if you will need chemo yet! One step at a time!
I think the 'idea' of a mastectomy is almost worse than the actual surgery. At least for me. I did do reconstruction both times and that is always a long process. Just got a (reconstructed) nipple yesterday-LOL 😃, so I'm still in that very long process…only areola tattoos left and I will finally be done (again)! If you do mx and do reconstruction, that's another topic on its own. The MOST important thing then is to have a good experienced plastic surgeon that you have confidence in. I was fortunate that he was the one provider I had the first time who is still practicing.
I hope you are busy planning and packing for your vacation. Sometimes I enjoy the planning almost as much as the trip itself!
Hang in there!
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Hi @hikingandhorses -
Sorry to hear that you have gotten back on the b.c. roller coaster.
Hoping that you are seeing 'something else' and won't have to be back here joining us.
However, if it is b.c. we are here and will help you through it, once again.
I know how hard it is after you start thinking you've beat it. 😕Thinking good thoughts for you.
Take Care!
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@mandy23 yes way ahead of myself but trying to slow my mind and stop, it’s hard but I will continue to try. There are so many unknowns and everything takes forever to unfold. However this is good in a way as I can go away and enjoy my vacation as I will not have nothing confirmed until I get home again.
I appreciate you sharing your experiences and insights with me.
We have the Oncotype test here. Last time I had a very low Oncotype of 7 so I am hoping that this time I am as fortunate.
I have been having a lot of rib pain these past few days and feel so tired and of course am thinking the worst on that! Likely I am just tense and I need to relax. I have to not let this get into my mind too much this time. It only serves to make me feel so much worse.
Yes I will be getting things together soon and looking forward to some very much needed chill time.
Thanks so much for walking alongside me. 💜
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Well, here I go again. DCIS grade 3 ER+. Meeting with the surgeon today. The one thing I can say is my facility is moving things quickly along - results come back quickly, appointments are made quickly etc. I know surgery is going to happen and I suspect they'll recommend a mastectomy. Will let you know.
I'm a contractor - owner/operator - and I'm in the middle of a bathroom remodel that has had problems from day 1. I'm 3 weeks behind schedule because of sourcing issues. I CAN'T leave my clients without the bathroom finished! 🙄 My list of what I need to get done and redirected by surgery time is growing!!
I hope everyone is doing well and vacations have been lovely!
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Very sorry to hear that you are back going through this again. Such a shock isn't it, even if you started to see the signs that the dx was coming?
Take a deep breath and try and take things one step at a time. Good to hear they aren't letting you wait too long between the steps. It's good to be able to have a plan.
Sorry you have other problems with your business…just adding to your stress.
Hang in there and you will get through this … once again. Feel free to vent. We are here to "listen".
Take care.
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@hikingandhorses I am sorry to hear you are having to go through all this again, so unfair after going through it all once. Glad things are all moving forward quickly for you though. We are here as supports anytime you need to vent or need anything at all.
I do hope that things align so you can get your work issues resolved so your stressors are less.
Thinking of you.
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Hello,
Just checking back in with an update. Back now from vacation and was told that my biopsy came back as benign so now they want another one done as they are saying it’s discordant but on the side note they are saying it could be concordant!??!! I am not sure what to believe! Trouble is the 3D mammo said mass in upper outer quadrant but the report for the biopsy says biopsy is from a mass in the upper inner quadrant!! I am so over this as not sure what to believe. I am not feeling very confident in this process. Next biopsy is on September 3. My original mammogram was on June 21, and here I am no further forward. I want to scream!
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@lavenderskies, How frustrating! Has the radiologist looked at the original imaging and made sure that the mass was actually seen in the upper outer quadrant or if the report should have said upper inner and the biopsy was actually done in the correct place using the mammogram as a reference? I'd make sure everyone is on the same page before having the second biopsy.
Those little words that can be so easily mixed up can come back to haunt you. When I had an upper GI bleed a nurse noted that I had filled five 1ml (rather than five 1L) emesis bags with bloody fluid in an hour so the insurance company denied coverage for hospitalization since 5 ml of blood is no big deal. I had to file an appeal using other medical records and bleeding scores which took time and stress as the spectre of a $40,000 bill was hanging over me. When I had a thyroidectomy either someone in the OR or the pathologist mixed up my left and right thyroid lobes. I figured it was no big deal but now that the left lobe has regrown to goiter side and is deviating my trachea those notes are causing problems planning a second surgery.
We have all heard the horror stories of the right knee being operated on instead of the left but using the opposite descriptor in medical notes can also cause serious issues. I'm glad the first biopsy was benign but it's too bad that you need a second biopsy and have all that additional worry to deal with.
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Hello @maggie15, I have not been able to talk to a radiologist. I spoke with my family doctor who gave me the results and it wasn't until I picked up the report from my doctor that I noticed the wording regarding the inner and outer quadrant. I am not sure who I can talk to as of now as I don't have a breast surgeon nor oncologist and the previous time that I left a message for a radiologist to call me back as I had questions they didn't return my call. I did call the patient navigator but she never answers the phone so I did leave a message but it can be 3-4 days before she returns calls. I am so frustrated over the lengthy process. If this is cancer then having a long delay isn't helpful prognosis wise.
Sounds as if you have had issues too with things getting reported wrong and on two occasions, like wow! Unbelievable!
When I went for the biopsy the radiologist was very nice and explained things to me. She said she was not convinced that it was cancer although of course she couldn't be sure until the biopsy results came in. She even said she didn't see a mass but yet her report says a biopsy of the mass was taken and she also said that she saw the area of concern in only one view but maybe she was looking at the screening mammogram and not the tomosynthesis one I had. Who knows?! The radiologist who reported on the tomosythesis mammogram said it was a spiculated mass but then gave me a 4B BIRADS but my understanding is that a spiculated mass is highly indicative of cancer so I do not understand why it was reported as a 4B although the mass was reported of being equal density to my breast tissue. They even did a mammogram after the biopsy was taken to check the area they took the sample from was correct. I am so confused.
I am so glad I got my report to read so I can ask questions next week but there should be better explanations and follow up in these situations for anyone going through this process as it is a hard path to navigate and a long wait to get the answers. Thank goodness I am able to advocate for myself, if I wasn't this would be even worse.
Rant over! Ugh!
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Radiologists are hard to get ahold of since they generally communicate through reports and talk only to other doctors. Can your family doctor contact the radiologist and ask her to check all the imaging and reports and discuss the results with the other radiologist? Of course with the coming holiday people are probably on vacation making it difficult to get answers. I’m so sorry that you got caught up in this confusion. Hopefully you won’t have to undergo an unnecessary biopsy.
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@maggie15 I doubt I would have time to get ahold of my doctor and get answers before my scheduled biopsy unfortunately.
I will have to wait and ask all the questions next week at my appointment. Ugh! Maybe the navigator will call before then but doubtful!
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It IS ALL very maddening. I'm walking with you gals. Details later.
Gail
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Sorry to hear you are going thru dx chaos. Ugh. I was in a similar place since I no longer had a MO since my 1st time had been so many years before and my original MO had retired. It's so hard to know who's 'in charge'. In retrospect, I think I should have leaned on my internal med doc more, but who knows? Really too bad the patient navigator is so unavailable! That's supposed to be what they do, but perhaps they are over worked or something…
At least the next biopsy is pretty soon. I agree with you. Unless you hear back from the navigator, you should be sure to have all your documentation and questions ready for your appointment next week. It sounds like you are able to advocate for yourself which is REALLY important! I think that's the 'benefit' of having gone through this before. I am a much better advocate for myself than I was the first time. I hope you end up with the radiologist that you really liked. That can make a real difference too.
Don't stress too much about the time lag. Although it's EXTREMELY frustrating and stressful to have delays, a few weeks isn't likely to change the outlook.
Thinking of you.
Take care.
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Hi @gailmary, I saw elsewhere that you were diagnosed with a new TN primary. I'm so sorry that this happened. You were hanging in there stable watching lung nodules and this snuck up on you. It seems so unfair.
Two receptor types of bc is unusual but probably not unheard of. Are they going to test your bone mets to see if those receptors have flipped?
At least there are lots of new and effective treatments for TN available now. Hopefully they will figure out a treatment plan that works and leaves you with good QOL. Hugs for you.
Maggie
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Hello,
Just stopping in with an update:
I spoke at length with the radiologist today (a different one from before on my last biopsy), and she was fantastic and took time to explain everything to me and went over all my imaging. She said that from the imaging she didn’t feel that there was anything to be concerned about however another radiologist felt that the area should be further investigated.
I questioned why the last biopsy said upper inner quadrant when the previous imaging indicated that it was in the upper outer quadrant. She said when they compressed the breast last time the area they saw was in the upper inner quadrant, and so a biopsy was taken of that area and she said she could see the holes on todays mammogram where the biopsy had been taken and so was happy with what the previous radiologist had taken.
She then said when she looks on a different view then the area appears in a different quadrant in the upper outer and so today she took a sample from that area. She gave me the option of not having the biopsy and taking more imaging today or even waiting and coming back in a few more months, but I did not want to do that in case there is something. I questioned about the spiculation that was seen and she showed me where that was on the imaging and said it could be but there’s also other areas of my breast that apparently look the same as that as well. She said that it was not a straightforward case.
She said she is happy with what she biopised today given the fact that there was not a an actual ‘thing’ to biopsy. I am really not sure what to think!
She said she isn’t expecting it to come back as malignant but of course could not be 100%.
These last few weeks, I have been having some discomfort in the breast and also under my arm, so I am thinking there must be something going on and I’ve had a few funny feelings down that arm too. I am beyond stressed at this time and don’t look too wonderful and don’t feel it either!
Not sure if anyone has any words of wisdom or has experienced anything similar to this unusual situation?
Sigh!
Thanks for reading this long post!
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Hi @lavenderskies, It's probably a good idea you had the second biopsy so that there is no question that everything has been checked. A biopsy causes some tissue damage and it's possible for the needle to hit a nerve which might explain the strange feeling down your arm. Icing and ibuprofin can help ease the inflammation. I actually bought some freezer ready round pads for nursing pain which I wore inside my bra.
Thanks for the update. I hope this biopsy comes back benign, too.
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Thanks @maggie15 I will try that. The discomfort and odd feelings I have been having has been happening for a few weeks on and off now so not from todays biopsy but not sure if it could be from the previous one. I keep hoping I will be in the clear. Regardless, I have a referral in for a consult for a double mastectomy which my precious surgeon said he would do and it’s documented in my chart.
Keep hopeful for me if you have some time. I need all the good energy I can get. 🤞🏻Thank you.
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Hello all,
Just coming back to give you an update. I am feeling very frustrated and at a loss right now. I had a repeat biopsy on September 3. I have been waiting for my family provider to call with the results but nothing so yesterday I called to find out what was going on and was called today to say that the result was benign but now they are going to take it to the radiology panel to discuss next steps but when I asked when this would be I was told they don’t know.
The report for this latest biopsy was done on Sep 9 but yet my doctor did not call to tell me anything. If I had not of called who knows when I would have heard anything. I am extremely frustrated with this whole process.
I have already had my provider send in a referral for a bilateral mastectomy a number of weeks ago which is what I am going to do regardless of what happens with this latest situation.
This whole nightmare started on June 21 when I had my routine yearly mammogram. Almost 3 months and still no idea of what is going on and no end in sight. If this is a cancer this is not good to wait all this while.
I have a lot of pain in my armpit and some in my breast too so I am concerned that there is a cancer and just want this removed as soon as possible.
I do not yet have a breast surgeon nor oncologist so I am in limbo and my anxiety is through the roof and I am just worn out with it all. I left a message with the navigator to call me to see if she can help with next steps or guide me on what to expect next. She told me previously that she has never heard of them doing would a third biopsy so am I right in thinking that it would be a surgical intervention to get this removed so they can do the pathology? If this is the case would they just go ahead and do a bilateral mastectomy as I have already requested?
Any thoughts or words of wisdom would greatly be appreciated. Thank you for reading this long post!!
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Hi @lavenderskies, I'm sorry about the frustrating experience you are having. If two radiologists disagree it is not uncommon for them to consult with a third or a panel of radiologists.
I would ask for or make an appointment with a breast surgeon. Insurance won't pay for a mastectomy unless there is a diagnosis that warrants it. A third biopsy would probably be a wide excision (a small lumpectomy) and a breast surgeon would do a cosmetically better job. Breast surgeons are used to looking specifically at breast imaging and have better knowledge of that anatomy than a general radiologist who reads all types of scans on all body parts. My BS showed up and took over when I was having a pre-surgery ultrasound so that she could get nonstandard views to plan the surgery. Also, a BS can communicate with radiologists peer to peer and get more informative answers than a patient.
Another option would be a consultation with a breast surgeon at an academic cancer facility. I ended out traveling 100 miles for treatment since my small rural hospital does its best but is lacking in expertise.
I hope you can resolve this saga soon!
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@maggie15 thanks for your reply.
A lumpecotmy logically makes sense as the next step as they would want to do a surgery to get this removed to get the pathology, since two biopsies have not shown fully what is going on. I thought a surgery would be the next step too, given the fact I was told by the navigator that a third biopsy would not be happening. I hope the panel does not suggest that as I don’t want any more biopsies. They just don’t seem to be in a rush to tell me what the plan is which is concerning. This has all been going on way too long.
I am in Canada so it’s a little different here and I have already been told I can have a double mastectomy when I asked a couple of years ago. Kicking myself I didn’t do it then but I just couldn’t make myself do it at the time, how I wish I had as I could have avoided all this. Hindsight however isn’t helpful right now.
I was able to speak with my family doctor today who is going to make an update to the referral to the breast surgical department to let them know I am now symptomatic to see if they can expedite this. Just wondering if they will still insist on a lumpectomy first but I don’t want that, I want to go straight to a bilateral as I don’t want two surgeries when it’s so unnecessary. I am wondering if they will do this for me?
I am feeling very low and stressed and so tired of it all.
Thanks for listening.
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Hi @lavenderskies , Canada is a bit different. I lived in both Ontario and Quebec years ago. While the care is good, free and fast in an emergency otherwise you have to go with the flow (back then things flowed quicker in Ontario.) I hope your family doctor can get you an expedited appointment with a breast surgeon. They would be able to discuss surgical options with you and give you the rationales behind them. A breast surgeon rather than a radiologist seems to be the best physician for your current issues.
Occasionally I also have to remind myself that there is nothing you do can do about water under the bridge. I hope you are able to get the bilateral mx that will give you peace of mind. Hang in there and feel free to come back and vent whenever you need to.
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Thanks @maggie15 I appreciate your support and encouraging words.
I did speak to the navigator today and she said that the panel meet every 1-2 weeks as far as she was aware, and consisted of a surgeon, radiologist and a pathologist. Hoping they meet next week and I can find out what they feel is best regarding the next course of action. If they suggest a surgical removal I do hope they will agree to give me my bilateral as I do not want a lumpectomy and then another surgery as that makes no sense to me.
I also left a message with the booking clerk for the breast surgery consult appointments to give me a call too.
I feel I have covered all my bases now! Lol!
Hopefully I can get a plan together soon as this is taking so long.
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Hi @lavenderskies -
Really sorry to hear all that you are going through. 😒
I hope you get some answers and a plan soon. It's just so stressful not knowing what's going to happen.
Just letting you know I am thinking of you.
Take care. Hang in there.
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